2012 ANNUAL REPORT FOR END-STAGE RENAL DISEASE NETWORK 10 THE RENAL NETWORK, INC.

Transcription

1 2012 ANNUAL REPORT FOR END-STAGE RENAL DISEASE NETWORK 10 THE RENAL NETWORK, INC. Submitted By: The Renal Network, Inc. 911 E. 86 th St., Suite 202 Indianapolis, IN (317) Sponsored By: Centers for Medicare & Medicaid Services Contract Number: HHSM NW010C Date: JUNE 28, 2013

2 PREFACE

3 June 28, 2013 I am pleased to present the 2012 Annual Report for End-Stage Renal Disease Network 10, which outlines a year of Network activities, and is made possible by the coordinated effort among health care providers, patients, and Network staff. A total of 18 ESRD Networks throughout the country provide oversight of dialysis and transplant centers. The goal of the ESRD Networks is to assure appropriateness of dialysis care while fostering patient independence and well-being. ESRD Networks are funded through the Centers for Medicare and Medicaid Services (CMS). The Renal Network, Inc., is an independent agency which holds the contracts for ESRD Network 9 (Indiana, Kentucky and Ohio) and ESRD Network 10 (Illinois). Together the Networks monitor the treatment of patients with end-stage renal disease in the four-state region. The Renal Network, Inc., fosters and appreciates patient participation at all levels, extending from the Board of Trustees, the Medical Review Board, the Pediatric Renal Group, the Patient Leadership Committee and the Network Council to each individual dialysis unit. Our committee members are volunteers who strive to improve the quality of care provided to patients receiving treatment for ESRD. Their contributions of time and expertise have enabled our Network to fulfill the requirements of our CMS contract to the fullest, to drive a progressive organization. I wish to thank all the dedicated professionals, including those in each of our dialysis and transplant facilities and the Network office, without whose hard work and perseverance the Network accomplishments would not have been possible. I am proud of my association with The Renal Network, Inc., and I expect that the contributions of our stakeholders will continue to make our Network a model for others to emulate. Sincerely, George Aronoff, M.D. President

4 ESRD NETWORK ANNUAL REPORT TABLE OF CONTENTS 1. PREFACE Message from the President 2. INTRODUCTION A. Network Description 1 B. Network Structure 6 3. CMS NATIONALGOALS & NETWORK ACTIVITIES GOAL 1: Improving the quality and safety of dialysis related services provided for individuals with ESRD. 15 A Fourth Quarter Lab Data Collection 16 B. Network 9/10 CPM Goals 17 C. CMS National CPM Project 30 D. Fistula First (FF) Initiative 42 E. Network Special Projects/Studies 52 F. Focused Quality Assurance Activities 73 GOAL 2: Improve the independence, quality of life, and rehabilitation of individuals with ESRD through transplantation, use of self-care modalities, in-center self-care, as medically appropriate, through the end of life. 76 A. New Patient Packet 77 B. Resources & Opportunities for Beneficiaries 78 GOAL 3: Improve patient perception of care and experience of care, and resolve patient s complaints and grievances. 82 A. Concerns & Complaints 83 B Formal Grievances 87 C. Facility Concerns Regarding Patient Issues 88 D. Involuntary Discharges 91 E. Patients At-Risk for Involuntary Discharge 94 F. Barriers to Placement in a Dialysis Facility 97 G. Support & Mediation 101 GOAL 4: Improve collaboration with providers to ensure achievement of the goals through the most efficient and effective means possible, with recognition of the differences among providers and the associated possibilities/capabilities. 103 A. The ESRD Provider Community 104 B. Nephrology Community at Large 122

5 GOAL 5: Improve the collection, reliability, timeliness, and use of data to measure processes of care and outcomes; maintain Patient Registry; and to support the ESRD Network program. 125 A. Transition From SIMS to CROWNWeb SANCTIONS DATA TABLES 128 Table 1 ESRD Incidence - One Year Statistics 129 Table 2 ESRD Dialysis Prevalence - One Year Statistics 131 Table 3 Dialysis Patients Modality and Setting - In Home 136 Table 4 Dialysis Patients Modality and Setting - In Center 144 Table 5 Renal Transplant by Transplant Center 153 Table 6 Renal Transplant Recipients 161 Table 7 Dialysis Deaths 165 Table 8 Vocational Rehabilitation 167

6 Page 1 of 174 THE RENAL NETWORK, INC ANNUAL REPORT 2. INTRODUCTION A. Network Description The Renal Network, Inc. is an independent, not-for-profit organization that holds contracts with the Centers for Medicare and Medicaid Services (CMS) for ESRD Network 9 and ESRD Network 10. Network 9 includes the states of Indiana, Kentucky and Ohio. Network 10 consists solely of the State of Illinois. On April 1, 2010, ESRD Network 4, consisting of the states of Pennsylvania and Delaware, was merged into The Renal Network, Inc. The Renal Network maintains an office and staff members in Pittsburgh, Pennsylvania to administer the Network 4 contract. This report addresses the contract administration of ESRD Network 9 and ESRD Network 10 under the corporate structure of The Renal Network, Inc. The total population in the four-state area of Network 9 and Network 10 is 35,337,229 ( State Population Estimates: 2012 Estimates, U.S. Census Bureau Quick Facts, Illinois, Indiana, Kentucky and Ohio," U.S. Department of Commerce, Bureau of the Census.) ESRD Incidence between 2011 and 2012 showed a decrease by 3% in Network 9 and a slight decrease of less than 1% (i.e., 39 patients) in Network 10; prevalence increased by 4% in both Network 9 and Network 10 between 2011 and 2012 (See Figure 1 CMS CROWNWeb 2012 Database/CMS SIMS Database).

7 Page 2 of 174 About one-half of the population of Illinois lives in the metropolitan Chicago area. In total, 83 percent of the population lives in urban areas and 17 percent of the population lives in rural areas. Other urban areas (with a population of greater than 100,000) in Illinois are Springfield (the state capital), Rockford, and Peoria. About two-thirds of the population of Indiana lives in urban areas. Indianapolis is the state capital and the largest city in Indiana, with a population of over 1,000,000. Other urban areas (with a population of greater than 100,000) are Fort Wayne, Gary, Evansville and South Bend. The population of Kentucky is about evenly divided between rural and urban dwellers. Urban centers (with a population of greater than 100,000) are Louisville, Lexington, Owensboro, Covington, Bowling Green, Paducah, Hopkinsville, and Ashland. The Kentucky state capital is Frankfort. About three-quarters of the population of Ohio live in urban areas. Urban centers (with a population of greater than 100,000) include Cleveland, Columbus (the state capital), Cincinnati, Toledo, Akron, Dayton, and Youngstown. Demographic characteristics for each state are illustrated in Figure 2.

8 Page 3 of 174 Figure Estimates General Population Illinois, Indiana, Kentucky & Ohio Age, Race & Ethnicity Information* Illinois Indiana Kentucky Ohio Population 12,875,255 6,537,334 4,380,415 11,544,225 State Rank 5 th 15 th 26 th 7 th White 78% 87% 89% 84% Black 15% 9% 8% 12% Other 7% 4% 4% 4% Hispanic 16% 6% 3% 3% Under 19 30% 31% 30% 29% % 56% 57% 56% 65 & Over 13% 13% 13% 14% Male 49% 49% 49% 49% Female 51% 51% 51% 51% *U.S. Census Bureau, State & County Quick Facts, Illinois, Indiana, Kentucky & Ohio A comparison of the general population to the dialysis population shows that the dialysis community is consistently overrepresented for each state in the areas of race (African American) and in the population ages 65 and older, as displayed in Figure 3 for Indiana, Figure 4 for Ohio, Figure 5 for Kentucky, and Figure 6 for Illinois. Data for these illustrations was taken from the U.S. Census Bureau, State & County Quick Facts for the general population and the CMS CROWNWeb data base for the dialysis population.

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11 Page 6 of 174 B. Network Structure 1. Staffing. The Renal Network employs a total of 19 staff members to administer the CMS contracts for ESRD Network 9 and ESRD Network 10; 15 are full-time employees and four are parttime employees. Susan A. Stark, Executive Director Bridget M. Carson, Assistant Director Jason Nesius, C.P.A., M.B.A. Finance Director Janet Nagle, Office Manager Raynel Wilson, R.N., C.N.N., C.P.H.Q., Quality Improvement Director Mary Ann Webb, M.S.N., R.N., C.N.N., Quality Improvement Coordinator Cynthia Miller, R.N., C.P.H.Q., Quality Improvement Coordinator Janie Hamner, Quality Improvement Assistant Dolores Perez, M.S., Communications Director Project Director, responsible for the overall operation of all functions of The Renal Network, Inc. Provides back-up in administrative responsibilities. This position is also responsible for coordinating activities for the Pediatric Renal Group, the Nominating Committee and the Midwest Chronic Kidney Disease Coalition. Oversees financial management for the corporation. Responsible for operation of the Network office, including planning and coordination of meetings, bookkeeping and personnel. Oversees all quality improvement projects and intervention activities, and coordinates the Fistula First Initiative for ESRD Network 9 and ESRD Network 10. Assists with quality improvement and intervention activities and grievance resolution. Assists with quality improvement and intervention activities, and grievance resolution. Responsible for support to the Quality Improvement Department. Oversees the Network websites, publications and resource information; assists with patient activities.

12 Page 7 of 174 Kathi Niccum, Ed.D., Patient Services Director Laura Bedwell, MSW, LCSW, Patient Services Coordinator Arlene Weinberg, MA, LSW, Patient Services Coordinator Katherine Stark, Patient Services Operational Coordinator Richard Coffin, Data Services Director and Data Manager Christina Harper, Information Management Coordinator Marietta Gurnell, Information Management Coordinator Deborah Laker, Information Management Coordinator Roianne Johnson, Data Specialist Rita Cameron, Secretary Responsible for direction of all patient activities, conflict resolution training programs for staff, coordinates and facilitates the activities of the Patient Leadership Committee and oversees the resolution of complaints, grievances, and facility concerns. Conducts intake for patient complaints and grievances and assists in their resolution. Conducts intake for patient complaints and grievances and assists in their resolution Provides support to the Patient Services Department in tracking complaints and grievances, plus secretarial support. Responsible for all programming needs and activities, and also directs the staff of the Data Services Department. Oversees the day-to-day operation of the Data Services Department. Responsible for administering data clean-up tools and CMS notifications on the SIMS database to correct errors in the system. Responsible for tracking patients for Network 9 facilities. Responsible for tracking patients for Network 10 facilities. Responsible for reception and secretarial support.

13 Page 8 of Committees. Network Council: The Network Council is composed of representatives of ESRD providers in Illinois, Indiana, Kentucky, and Ohio which are certified by the Secretary of Health and Human Services to furnish at least one specific ESRD service. The Council includes a representative of each of the current Medicare approved ESRD facilities, plus the membership of the Board of Trustees, the Medical Review Board (MRB) and the Patient Leadership Committee (PLC). The Network Council is responsible for the election of members to the Board of Trustees and the MRB. Elections are held by mail-in ballot. The Network Council meets once annually. During 2012, the following occurred: The Network Council met on April 24, 2012 via webinar. The agenda included: Welcome Corporate Overview Network Demographics 2012/2013 Quality Improvement Projects a. Vascular Access b. Care Transitions c. Infection Control Centers for Disease Control NHSN 5 Diamond Patient Safety Project CROWNWeb Update ADA Requirements Patient Services Report a. Complaints & Grievance Overview b. Resources Beneficiary Learning Network Special Project Network Contract Statement of Work Review Board of Trustees: The BOT is the chief governing body of The Renal Network, Inc. The Board of Trustees holds the CMS contracts for ESRD Network 4, ESRD Network 9 and ESRD Network 10, and is ultimately responsible for meeting contract deliverables and oversight of the administration of the Network budget. The Board of Trustees is composed of 23 members and an ex-officio immediate Past President.

14 Page 9 of Board of Trustee Positions by Category 7 Renal Physicians 1 At-Large Physician Up to 4 ESRD Patients 2 At-Large Members 1 Social Worker 1 Nurse 1 Dietitian 1 Administrator 1 Legal Representative 1 Technician 1 Financial Representative Past President (ex officio) 2 MRB Chairpersons Strategic Planning Chairperson (ex officio) 2012 Board of Trustees Meeting Schedule January 17 MRB/BOT Orientation May 22 Webinar October 11 January 11 - Webinar August 29 Webinar December 5 - Webinar 2012 Board of Trustees Membership President Vice President Treasurer & At-Large Member Secretary Strategic Planning Chair MRB Chair-ERSD Network 4 MRB Chair-ESRD Network 9 & ESRD Network 10 Administrator Dietitian ESRD Patient Representatives Financial Representative Legal Representative Nurse Physician At-Large Member At-Large George R. Aronoff, MD Paul Palevsky, MD Chester A. Amedia, Jr., MD Benjamin Pflederer, MD Emil Paganini, MD James E. Hartle, MD Peter B. DeOreo, MD Michelle Taylor Linda Ulerich, RD, LD Richard Ayers John Cannady James Dineen Diana Headlee-Bell Daniel DeFalco, CPA Robert Krebs, CPA Joseph Scodro Kathy Olson, RN Gordon McLennan, MD Keith Mentz

15 Page 10 of 174 Renal Physicians Social Worker Technician Susan Bray, MD Paul Crawford, MD Stephen Korbet, MD Joseph Liput, MD Charles Sweeney, MD Melvin Yudis, MD Bonnie Orlins, MSW Dennis Muter, CHT During 2012, the Board of Trustees: Ensured that the CMS contract deliverables were met and contract obligations were maintained. In concert with the MRB, the Board approved the Quality Improvement Work Plan (QIWP) outlining Network initiatives to meet CMS goals. Monitored the Internal Quality Improvement Plan and the Task Manager-Internal Quality Improvement program to gauge the effectiveness of Network work efforts. Reviewed and approved financial records and expenditure reports. Received and approved the annual audit from the accounting firm Alerding and Associates. The report was delivered with an unqualified opinion. This is the highest status which can be earned in the audit process. Monitored and approved the activities of the MRB, including the Vascular Access Advisory Panel, the Pediatric Renal Group, the Rehabilitation Subcommittee, and the Organ Procurement and Transplant Subcommittee; the PLC, the Nominating Committee, the Finance Committee, the Audit Committee, and the Strategic Planning Committee. Oversaw the CROWNWeb preparation efforts made by Network 9 and Network 10. Received updates on all other activities with CMS, The Forum of ESRD Networks, and ESRD contract issues. Approved the slates for election to the MRB. Annually, one-third of all elected positions come due for election per Network election bylaws. Terms of office are three years in length, with a term limit imposed after three consecutive terms in an elected position. In response to these requirements, the slates were formulated from nominations from the Network at large. The Nominating Committee reviewed the nominations to ensure the candidates were qualified for the positions being sought. The slates were sent to the BOT for approval, and then mailed to the Network Council facility representatives for voting. The election was final and results were announced by year-end.

16 Page 11 of 174 Medical Review Board: The Renal Network, Inc., maintains two separate Medical Review Boards. One is comprised of representatives of ESRD Network 9 and ESRD Network 10, and the other is made up of representatives of ESRD Network 4. The MRB functions with the concurrence and subject to the review and control of the Board of Trustees. The President of the Board of Trustees serves in an ad hoc capacity. The MRB performs functions prescribed by the regulations issued by the Secretary of Health and Human Services, as well as other duties related to quality improvement, vocational rehabilitation, and patient concerns as requested by the Network Council. The MRB is composed of 28 members by category, plus the ex-officio position of Board of Trustees President. Additional appointed members serve in an ad hoc capacity MRB Positions by Category ESRD Network 9 & ESRD Network Renal Physicians 2 Physicians At-Large 1 Pediatric Renal Physician 2 ESRD Dietitians Up to 4 ESRD Patients 2 ESRD Nurses 1 Transplant Physician 2 ESRD Social Workers 2 ESRD Facility Administrators 2 ESRD Technicians 2012 MRB Meeting Schedule January 17 MRB/BOT Orientation March 29 January 25 - Webinar May 22 Webinar July 11 Webinar October MRB Membership Chairperson Board of Trustees President Ad Hoc Members ESRD Dietitian ESRD Facility Administrator ESRD Nurse ESRD Patients Peter B. DeOreo, MD George R. Aronoff, MD Ashwini Sehgal, MD Beth Fry, RD, LD Mary Ellen Brabec, RD Francine JnBaptiste, RN William Poirer Steve Adley, BSN Beth Smith, RN Lorraine Edmond

17 Page 12 of 174 ESRD Social Workers ESRD Technicians Pediatric Renal Physician Physicians At-Large Renal Physician Transplant Physician Statistical Consultant Brenda Gerencser Yolanda Winn Craig Fisher, MSW, PhD Helen Kurtz, LISW, MSW Hap Pierce, CHT Rena Rozelle, CHT Stuart Goldstein, MD Timothy Pflederer, MD Louis Thibodeaux, MD Richard Hellman, MD Robert Heyka, MD Maria Sobrero, MD Orly Kohn, MD Marcia Silver, MD Larry Klein, DO Mary Hammes, DO Michael Kraus, MD Anthony Dengenhard, DO Jessica Lucas, DO Prabir Roy-Chaudhury, MD Michael Brier, PhD During 2012, the MRB: Oversaw the development and implementation of the Quality Improvement Work Plan (QIWP), which outlines quality activities of Network 9 and Network 10. Continued the implementation of the CMS Fistula First: National Vascular Access Improvement Initiative. A special Vascular Access Advisory Panel (VAAP) continued to assist the MRB to coordinate this project. The Network 9 and Network 10 Fistula First initiative included providing reports on fistula incidence and prevalence to the dialysis providers to serve as a benchmarking tool, dissemination of educational resources to dialysis facilities, placement of resources and educational materials on the Network website, and technical assistance to regional vascular access committees. Oversaw the distribution of the Facility Specific Lab Data Reports that included hemodialysis adequacy and anemia management. The facility reports detailed the fourth quarter 2011 data collection outcomes and were distributed to facility

18 Page 13 of 174 medical directors, administrators, and nurse managers. The facility reports were mailed to approximately 680 dialysis programs during spring Assisted in the dissemination of information on accessing the Dialysis Facility Report compiled by the Kidney Epidemiology Cost Center (KECC), which displays descriptive data from each facility, with comparisons of regional, state, Network and national statistics for those same areas. The data include demographic and diagnosis data, as well as standardized mortality rate (SMR) and gross mortality. These profiles are distributed annually to each facility to help them in their continuous quality improvement efforts. The reports provide data for benchmarking, and also provide a comparison to local, state and national trends. In 2012 the reports were available online only through the website Oversaw the activities of the Pediatric Renal Group, a subcommittee of the Medical Review Board. The goal of the Group is to act as a resource to the Network on the care and treatment of pediatric dialysis and transplant patients. The Pediatric Renal Group met on June 8. Received continuous updates on the activities of CMS and the ESRD Network Scope of Work, the United States Renal Data System (USRDS), and The Forum of ESRD Networks. Reviewed data profiles, including rates for clinical performance measures, mortality, home therapy, and transplantation. Reviewed and provided input regarding grievances, patient complaints and facility concerns filed with the Network and reviewed the trends and areas of concern. Patient Leadership Committee (PLC): The purpose of the PLC is to identify and address ESRD patient needs and concerns through the development of educational projects and activities. Membership on the PLC includes patients and dialysis facility staff PLC Membership Kim Algaier Lorraine Edmond Helen Neale, LISW Richard Ayers (Ric) Craig Fisher, PhD, LCSW Lana Schmidt Roberta Bachelder Beth Fry, RD, LD Martinlow Spaulding Charlie Berger Brenda Gerencser Kathy Thomas Richard Berkowitz Barbara Gronefeld Lynn Winslow Celia Chretien, RN Jim McFarlin Yolanda Wynn James Dinnen (Jim) Gina Mendiola, RD

19 Page 14 of PLC Meeting Schedule June 22, 2012 November 2, 2012 During 2012, the PLC accomplished the following: Provided patient stories on rehabilitation issues such as employment, quality of life activities and volunteerism. Reviewed the trends of beneficiary complaints, facility concerns, admission barriers and involuntary discharges and provided insight and suggestions regarding some of the issues presented. Developed an educational and training tool for staff on Professionalism from the Patient Point of View which will also contain slides for an in-service program and slides for a patient education program on professionalism Provided input on needs of the young adult dialysis patient and how they are different from older dialysis patients that was used for Network articles for staff and patients. Provided input for patient empowerment workshops and participated as trainers for the workshops. Participated on the Robert Felter Award Review Committee to identify the award winners. Provided input regarding social media and how it can be used to educate patients. Provided input on the new Statement of Work (SOW) and offered suggestions for increasing patient engagement and LAN activities.

20 Page 15 of CMS NATIONAL GOALS & NETWORK ACTIVITIES ESRD Network 9 and ESRD Network 10 share a responsibility, along with the other 16 Networks throughout the United States, for achieving the goals of the Medicare ESRD Program. ESRD Network 9 and ESRD Network 10 continuously develop and implement quality improvement projects; each project is designed to work toward these common goals to benefit the population of individuals with end-stage renal disease. GOAL 1: Improving the quality and safety of dialysis related services provided for individuals with ESRD. Improving quality and safety for care of ESRD beneficiaries was accomplished through clinical initiatives developed and supervised by the MRB and implemented by the Quality Improvement Department of The Renal Network, Inc. Quality is defined by the Institute of Medicine (IOM) as: The degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge. These activities, designed to achieve the IOM quality definition, are categorized in six main subject areas: A Fourth Quarter Lab Data Collection (data used to design 2012 projects) B. Network 9 and Network 10 CPM Goals C. CMS National CPM Project D. Fistula First Initiatives E. Network Special Projects/Studies F. Focused Quality Assurance Activities

21 Page 16 of 174 A Fourth Quarter Lab Data Collection (data used to design 2012 projects). The 2011 Fourth Quarter Lab Data Collection contributes to a consistent clinical database to assess patient outcomes and support improvement activities within dialysis facilities in ESRD Network 9 and ESRD Network 10 during The fourth quarter 2011 lab data elements consisted of: Pre and post BUN to calculate URR for adequacy management of HD Reported Kt/V for adequacy management of HD Reported weekly CrCl and reported weekly Kt/V for adequacy management of PD Hemoglobin for anemia management Serum Albumin and lab method for nutrition management Transferrin Saturation for anemia management Ferritin for anemia management Phosphorus for mineral metabolism management Calcium for mineral metabolism management In the fourth quarter of 2011 (October, November and December), large dialysis organizations submitted lab data via data download to ESRD Network 11. Network 11 also collected lab data from national labs for independent hemodialysis and peritoneal dialysis facilities that used them. All other independent hemodialysis and peritoneal dialysis facilities were asked to voluntarily submit to the Network lab data via Excel spreadsheets. Network 9 had approximately 97% of dialysis facilities voluntarily participating in the lab data collection. Network 10 had approximately 96% of dialysis facilities voluntarily participating. The goals of the project were to: (1) increase the knowledge and awareness of the Fourth Quarter Lab Data Collection to Network 9 and Network 10 ESRD providers, (2) standardize the data collection process, (3) analyze the applicability of the data on facility and Network levels, (4) implement programs and projects that can be repeated on a facility and Networkwide level, and (5) improve patient outcomes. The Renal Network maintains a process to collect, analyze, and provide data feedback reports to facilities. Feedback reports describing the data collected were prepared by ESRD Network 11 and distributed to facility medical directors, administrators, and nurse

22 Page 17 of 174 managers on May 4, The reports compared facility-specific outcomes to state and national outcomes. Aggregate information was placed on the ESRD Network 9 and ESRD Network 10 website and the data was reviewed by the MRB. The fourth quarter lab dataset is reviewed each year by the MRB. Under the MRB direction, information is sent to the dialysis providers, along with resources to assist providers in improving their outcomes. Interventions can include: Facility specific data collection and/or action plans Feedback reports Webinar education workshops Tool kits for various outcomes management The focus is on K/DOQI guidelines, facility outcome data, and facility plans for improvement. Feedback reports are specifically targeted to medical directors, administrators, and nurse managers. Multi-color reports display data in tables and charts. A Clinical Performance Goals document was posted to the Web site in June 2012 displaying state, Network, and national data for facility comparison. All other resources that are developed are posted to the website as well. Facilities are informed of their availability, and also about technical support activities available from the staff nurses in the Quality Improvement Department, through routine announcements and mailings. These data are used when developing quality improvement initiatives for the coming year. The data are also used when calculating facility profiles in the Facility Intervention Profiling System which is detailed in section E., Focused Intervention Activities. CROWNWeb became the data collection source in May As data become available, the Network will again send facility specific reports in order to provide comparisons to state, Network and national outcomes for facility benchmarking purposes. B. Network 9 & Network 10 CPM Goals. The 2011 Fourth Quarter Lab Data were analyzed by the MRB and utilized to develop CPM goals and identify areas for quality improvement in 2012 and In 2012, ESRD Network 9 and ESRD Network 10 Clinical Performance goals and resources for adequacy of dialysis, anemia management, nutrition management, mineral metabolism

23 Page 18 of 174 management, and vascular access were available on the TRN website: No new data has been provided to Networks through CROWNWeb so the MRB based the Clinical Performance goals on the 2011 Fourth Quarter Lab Data. Adequacy of Dialysis Outcomes and Process Goals 2012 (based on 2011 data) Hemodialysis (Figures 7 & 8) Process Goal: All hemodialysis patients measured for adequacy every month. Outcome Goal: 96% of patient population achieves Kt/V Daugirdas II 1.2. OR Outcome Goal: 96% of patient population achieves URR 65%.

24 Page 19 of 174 Adequacy of Dialysis Outcomes and Process Goals 2012 (based on 2011 data) - Peritoneal Dialysis Process Goal: All peritoneal dialysis patients measured for adequacy every four months. Outcome Goal: 85% or more PD patients achieves at least a weekly Kt/V urea of 1.7. Anemia Management Outcomes and Process Goals 2012 (based on 2011 data) - Hemodialysis & Peritoneal Dialysis (Figures 9-14) The FDA notified healthcare professionals (June 24, 2011), that new recommendations for more conservative dosing of ESAs in patients with CKD and ESRD have been approved to improve the safe use of these drugs. The FDA has made these recommendations because of data showing increased risks of cardiovascular events with ESAs in the CKD and ESRD patient population. The FDA has recommended that healthcare professionals should: Weigh the possible benefits of using ESAs to decrease the need for red blood cell transfusions in Chronic Kidney Disease (CKD) and ESRD patients against the increased risks for serious cardiovascular events

25 Page 20 of 174 Inform their patients of the current understanding of potential risks and benefits. Individualize patient therapy and giving the lowest possible ESA dose to reduce the need for blood transfusions. The FDA recommends administering ESAs only to reduce the need for blood transfusions and specified a ceiling-hemoglobin of 11 gm/dl in patients with ESRD. RBC transfusions are undesirable because they: Increase sensitization of recipients to human antigens and thereby decrease the pool of potential compatible donors for organ transplantation to the patient. Have been associated with communicable diseases such as HIV and Hepatitis B and C. May be associated with new communicable diseases in the future. Are associated with iron overload which may lead to organ damage. Anemia is present in the majority of CKD patients. Untreated CKD-associated anemia can result in a number of physiologic abnormalities that can reduce the quality of life and decrease patient survival. The Network goal is to individualize treatment to maintain hemoglobin levels at a range best suited to the patient s level of activity, symptoms and degree of ESA resistance.

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28 Page 23 of 174 Albumin Outcomes and Process Goals 2012 (based on 2011 data) Hemodialysis (Figure 15) Process Goal: All hemodialysis patients measured for albumin every month. Outcome Goal: 80% of hemodialysis patient population achieves an albumin 3.5 gm/dl bromcresol green method (BCG) or 3.2 bromcresol purple method (BCP) (correct for other assay methods). Process Goal: If a patient has an albumin <3.5 BCG or <3.2 BCP gm/dl, documentation of actions to be taken to improve nutrition outcomes should be written into the patient s plan of care.

29 Page 24 of 174 Albumin Outcomes and Process Goals 2012 (based on 2011 data) Peritoneal Dialysis (Figure 16) Process Goal: All peritoneal dialysis patients measured for albumin at every PD clinic visit. Outcome Goal: 60% of hemodiaylsis patient population achieves an albumin 3.5 gm/dl bromcresol green method (BCG) or 3.2 bromcresol purple method (BCP) (correct for other assay methods). Process Goal: If a patient has an albumin <3.5 BCG or <3.2 BCP gm/dl, documentation of actions to be taken to improve nutrition outcomes should be written into the patient s plan of care.

30 Page 25 of 174 Mineral Metabolism Outcomes and Process Goals 2012 (based on 2011 data) Hemodialysis & Peritoneal Dialysis (Figures 17-20) Outcome Goal: Reviewing a three-month average of the last serum phosphorus level of the month, 60% of the patient population will have a serum phosphorus 5.5 gm/dl. Process Goal: Review other recommendations from the NKF-K/DOQI Clinical Practice Guidelines for Bone Metabolism and Disease in Chronic Kidney Disease.

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33 Page 28 of 174 Hemodialysis Vascular Access Goals 2012 (latest data April 2012) (Figures 21 & 22) Outcome Goal: 66% prevalent patient population AV Fistula in use rate Outcome Goal: 10% prevalent patient population catheter only 90 days rate

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35 Page 30 of 174 C. CMS National CPM Project. The CMS National CPM Project has been suspended. CROWNWeb was launched in May Independent facilities are entering monthly clinical data into CROWNWeb while large dialysis corporations are providing this clinical information through a batch entry system. This data has not been provided to Networks. All ESRD Networks used the 2011 Fourth Quarter Electronic Laboratory Data (ELab) Collection to develop goals and identify opportunities for quality improvement initiatives for All 18 Networks, including ESRD Network 9 and ESRD Network 10, participated in the national ELab Data Collection during the fourth quarter of Over 90 percent of in-center hemodialysis and peritoneal dialysis patients were collected from dialysis providers in the United States for both adult and pediatric patients. In the fourth quarter of 2011 (October, November and December), large dialysis organizations submitted lab data via data download to ESRD Network 11. Network 11 also collected lab data from national labs for independent hemodialysis and peritoneal dialysis facilities that used them. All other independent hemodialysis and peritoneal dialysis facilities were asked to voluntarily submit to the Network lab data via Excel spreadsheets. Feedback reports describing the data collected were prepared by ESRD Network 11 and were distributed to facility medical directors, administrators, and nurse managers on May 4, The reports compared facility-specific outcomes to state and national outcomes. A Clinical Performance Goals document was posted to the website in June 2012 displaying state, Network, and national data for facility comparison. The data were reviewed by the MRB to help identify topics for quality improvement projects. The fourth quarter lab dataset is reviewed and analyzed each year comparing Network 9 and Network 10 outcomes to those of other Networks and the United States. Figure 23 displays how Network 9 and Network 10 ranked for adult in-center hemodialysis clinical outcomes among the other 16 Networks in the United States for the past three years.

36 Page 31 of 174 Figure 23 - National Ranking for Network 9/10 4Q09-4Q11 Data for Adult (18 years) In-center Hemodialysis Patients Source: Electronic Laboratory Data (ELab) Project ESRD Network 11 & CMS 4 th Quarter 2009, 2010, & 2011 Clinical Network 9 Network 10 Characteristic 4Q09 4Q10 4Q11 4Q09 4Q10 4Q11 Percentage Patients with Average: Kt/V 1.2 URR 65% Hgb 10-12gm/dL Hgb 13 gm/dl TSAT 20% Albumin 3.5 gm/dl Albumin 4.0 gm/dl Calcium mg/dl Phosphorus mg/dl Percentage Prevalent Patients: AV Fistula in use Ranking scale=#1 best, #18 worst Figures compare and rank the 18 Networks and the United States in regard to several adult hemodialysis quality indicators which were collected and compared in the Elab Project National 2011 and Trends Report.

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41 Page 36 of 174 Figure 32 displays how Network 9 and Network 10 ranked for adult peritoneal dialysis clinical outcomes among the other 16 Networks in the United States for the past three years. Figure 32: National Ranking for Network 9/10 4Q09-4Q11 Data for Adult (18 years) Peritoneal Dialysis Patients Source: Electronic Laboratory Data (ELab) Project ESRD Network 11 & CMS 4 th Quarter 2009, 2010, & 2011 Clinical Characteristic Percentage Patients with Average: Kt/V 1.7 CrCl 60L/wk Network 9 Network 10 4Q09 4Q10 4Q11 4Q09 4Q10 4Q Hgb 10-12m/dL Hgb 13 mg/dl Albumin 3.5 gm/dl Albumin 4.0 gm/dl TSAT 20% Calcium mg/dl Phosphorus mg/dl Ranking scale=#1 best, #18 worst Figures compare and rank the 18 Networks and the United States in regard to several adult peritoneal dialysis quality indicators that were collected and compared in the Elab Project National 2011 and Trends Report.

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47 Page 42 of 174 D. Fistula First (FF) Initiative. The development of Quality Improvement Projects (QIP) is mandated in the ESRD Network contracts with CMS. The QIPs are developed and directed by the MRB, then reviewed, approved and monitored by the Board of Trustees. In 2012, the majority of quality improvement efforts were focused on improving AV fistula rates and decreasing catheter rates through the Fistula First Initiative. Background: In 2003, all 18 of the ESRD Networks and CMS, along with clinicians, dialysis providers, and patients, developed a three-year plan called the National Vascular Access Improvement Initiative (renamed Fistula First in 2004). This plan implements strategies for the improvement of patient vascular access outcomes to reach the CMS goal and K/DOQI guidelines for AV fistula use of >65% prevalence. Fistula First aims to build on established methods to increase fistula use, and to take advantage of system-level diagnosis and strategies for improvement. Collaboration between ESRD Networks, providers, physicians, vascular surgeons, and health professionals is key to spreading the change ideas for improving AV fistulas Primary objectives: To increase the prevalence rate of AV fistula in Network 9 from 54.2 percent in March 2011 to 56.6 percent in March 2012 (an increase of 2.4 percentage points) and to increase Network 10 from 57.2 percent in March 2011 to 59.0 percent in March 2012 (an increase of 1.8 percentage points). To continue focusing on vascular access management with April 2012 data being the last data point for vascular access due to the launch of CROWNWeb. To collect facility AV fistula and ALL catheter rates in order to assess QIP participant outcomes through September To continue to monitor QIP facilities through the end of 2012 To increase the awareness of early referral for vascular access in the incident CKD patient. To educate providers, physicians, and vascular access surgeons on documentation of AV fistula assessment pre-hemodialysis access placement. To educate providers, physicians, and vascular access surgeons on the AV fistula improvement strategy. To provide resources and tools to providers to assist with developing initiatives for placement and assessment of AV fistula and catheter reduction.

48 Page 43 of 174 To educate medical directors, providers, and the facility interdisciplinary team on the best practices of a Quality Assessment and Performance Improvement (QAPI) program for vascular access management. Progress toward these goals by March 2012 is detailed in Figure 42: Figure 42. Network 9/10 Fistula First Percentages Fistula Prevalence as of March 2012 Network 9 Achieved CMS Goal in Sep 11 Fistula Prevalence Network 10 Achieved CMS Goal in Jul 11 Mar 11 Mar 12 Mar 11 Mar 12 K/DOQI Guidelines CMS Stretch Goal 54.2% 57.8% 57.2% 59.2% >65% 66% Actions. The national Fistula First Breakthrough Initiative (FFBI) coalition conducted an extensive root cause analysis in This root cause analysis was used to develop a strategic plan that identified priority areas to be addressed. The following seven strategies were developed into an operational plan to increase the AV fistula utilization rate to 66% in prevalent hemodialysis patients for ESRD Networks and to assist Quality Improvement Organizations (QIOs) in reducing the gap between the statewide baseline AV fistula rate and 66% for incident hemodialysis patients: Strategy 1: Nephrologist as Leader - Encourage and support nephrologists to take a leadership role and be accountable for vascular access management in all hemodialysis patients. Strategy 2: Leveraging Partnerships - Partner to improve AV fistula placement and utilization rates. Strategy 3: Hospital Systems - Modify hospital systems to promote AV fistula placement. Strategy 4: Patient Self-Management - Promote patient self-management throughout the stages of chronic kidney disease. Strategy 5: Addressing Access Problems - Promote fast-track protocols for rapid identification and referral of vascular access problems which include failure to mature, revision of the failing AV fistula, and placement of an AV fistula.

49 Page 44 of 174 Strategy 6: Practitioner Training and Credentialing - Promoting training, experience, and credentialing of healthcare professionals in the area of hemodialysis vascular access management. Strategy 7: FFBI Change Concepts - Expand and endorse the current Change Concepts for education and promotion throughout the renal, surgical, and interventional communities. The staff of Network 9/10 utilized tools and resources from for education and technical support and marketed new tools that were developed through FFBI to providers and professionals. The staff of Network 9/10 participated on FFBI activities at the national, regional and local level. The Quality Improvement Department continued to market the vascular access management resources handbook that was developed in The 3Ps (Prevention of Catheters, Placement and Use of AVF, Preservation of AVF) of Vascular Access Success Handbook was developed using best practice protocols, algorithms, and many of the tools provided on the FFBI Web site. The intent of the 3 Ps handbook is to guide hemodialysis vascular access improvement efforts and change existing practices through Quality Assessment and Performance Improvement (QAPI) projects. This handbook brings together a number of best-practice concepts and suggested tools in support of those concepts. A 3Ps Toolkit was posted on The Renal Network, Inc. website, providing all available tools electronically that addresses Prevent Catheter, Place and Use Fistula, and Preserve Fistula. Nationally, Network 9/10 participated on the FFBI conference calls for Network Quality Improvement Directors (QIDs) on February 8, March 14, June 13, July 11, August 8, September 19, November 14, and December 18, Vascular Access Advisory Panel Coalition. A panel of experts oversees the Fistula First Initiatives, under the direction of the MRB. This Vascular Access Advisory Panel Coalition (VAAPC) was organized at the beginning of the Fistula First Initiative in The VAAPC continued its activities during 2012.

50 Page 45 of 174 Members of the coalition include: Tim Pflederer, M.D., Chair Renal Care Associates Peoria Illinois Stephen Adley, R.N. FMC North Ohio Olmstead Anil Agarwal, M.D. Ohio State University Columbus Ohio George Aronoff, M.D. University of Louisville Louisville Kentucky Stephen Ash, M.D. Wellbound Lafayette Indiana Michael Brier, Ph.D. University of Louisville Louisville Kentucky Deepa Chand, M.D. Akron Children s Medical Center Akron Ohio Catherine Colombo, R.N. Chicago Illinois Peter DeOreo, M.D. Centers for Dialysis Care Cleveland Ohio Mary Hammes, D.O. Woodlawn Dialysis Chicago Illinois Richard Hellman, M.D. DCI Indianapolis Indianapolis Indiana Mike Kraus, M.D. IU Medical Center Indianapolis Indiana Gordon McLennan, M.D. Cleveland Clinic Cleveland Ohio Prabir Roy-Chaudhury, M.D. University of Cincinnati Cincinnati Ohio Marcia Silver, M.D. Metro Health Medical Cleveland Ohio Center Louis Thibodeaux, M.D. General & Vascular Surgical Cincinnati Ohio Specialists Jay B. Wish, M.D. University Hospitals of Cleveland Cleveland Ohio The VAAPC is charged with developing and implementing strategies to achieve Fistula First goals, under the direction of the MRB. The VAAPC met twice during 2012, once in March and once in October. Conference calls were scheduled during interim times to continue the work of this advisory body. Reports of VAAPC activities were made continuously to the MRB. Network staff participates on the national FFBI coalition, so ideas between these two groups are shared routinely. Data Distribution. Fistula First Facility Specific Reports were sent to all hemodialysis programs in March 2012 to show fourth quarter 2011 data and June 2012 to show first quarter 2012 data. No other reports were provided due to data entry into CROWNWeb.

51 Page 46 of 174 This quarterly FF data report gives facilities the number of prevalent fistula needed to meet fistula percentage goals based on the total number of patients and the number of patients with a fistula in their facility. It displays graphs illustrating quarterly results, as well as progress over time compared to the state, Network and United States where applicable. It also graphs same population size facilities to each other in their Health Service Area (HSA) so that facilities can use this report to compare themselves to other facilities of like size regarding AV fistula rates in their area. This report provides the dialysis facilities with a tool which can be used in conjunction with other facility methods of continuous quality improvement (CQI) to identify patients suitable for conversion to a fistula. These data also enable the Network to target facilities with poor outcomes for intervention. Facilities with good outcomes are utilized for positive intervention, mentoring, and demonstrating best practices. The FF data report was historically sent to facility medical directors, administrators, and nurse managers quarterly but ended in June 2012 due to data entry into CROWNWeb.

52 Page 47 of 174 Communications. Stakeholders were identified as the facility medical director, administrator, nurse manager, vascular access coordinators, nephrologists, patients, vascular access surgeons, and interventional radiologists. Individual databases are continually updated and maintained to enable ongoing communications with these audiences. Information and educational materials regarding the Fistula First Initiative were sent to the various stakeholders by mail and as appropriate and necessary. February 1 & 2, 2012: The Turning Vascular Access Best Practices into Exemplary Outcomes webinar was held on these two days. There were 177 participants from Network 9 representing 157 facilities and 87 participants from Network 10 representing 75 facilities. February 2, 2012: ed the Fistula First Gold Standard Newsletter through FFBI to facility administrators, medical directors, nurse managers, vascular access coordinators, patient care technicians, social workers, and dietitians. February 7, 2012: ed the January/February E-VAC newsletter to vascular access coordinators. The newsletter included patient fistula journey stories, Fistula First literature from the FFBI website, and QAPI process tools. February 10, 2012: ed an announcement promoting the NANT Symposium that was held on March 6 & 7, 2012 in Las Vegas. The flyer went to patient care technicians and vascular access coordinators and posted on the Network website. February 14, 2012: A physician specific incident CKD patient vascular access data report was sent to physicians that had filed a 2728 between July 31, 2011 and December 31, This activity began in December 2008, issuing reports twice per year to physicians based on 2728 data during a specified period of time. March 27, 2012: ed the December 2011 Monthly AVF Tracking Report and the 4th Quarter 2011 Vascular Access Report to vascular access coordinators and medical directors. The reports display: o Prevalent fistula rates compared to region, state, Network, and United States, o A facility fistula rate ranking, o Graphs displaying one year of prevalent fistula in use, catheter with fistula maturing, catheter <90 days, and catheter >90 days rates. April 2 & 3, 2012: ed the March/April E-VAC newsletter to vascular access coordinators and facility administrators. The newsletter included the ANNA Save the Vein project, 2012 Nephrology Conference announcement, Creative Actions to Improve Vascular Access Outcomes Webinar announcement and QAPI process tools. April 25, 2012: Surgeon reports were sent to surgeons in Networks 9 and 10. These reports utilized 2009 and 2010 Medicare Part B claims data from CMS.

53 Page 48 of 174 May 8, 2012: A Cannulation Camp entitled One Dialysis Access for a Lifetime was held in Oakbrook, Illinois. There were 167 participants in attendance. May 15 & 16, 2012: The Creative Actions to Improve Vascular Access Outcomes Webinars were held. There were 170 participants from Network 9 and 57 participants from Network 10. The webinars were recorded and have been viewed by 29 dialysis staff members. June 14, 2012: ed the May/June E-VAC newsletter vascular access coordinators and administrators. The newsletter included links to the 5 Diamond Infection Control and Stenosis Surveillance modules, announcement about upcoming Cannulation Camp in Indianapolis, Indiana, and links to QAPI vascular access management tools from the 3Ps website toolkit. June 27, 2012: ed the March 2012 Monthly AVF Tracking Report and the 1st Quarter 2012 Vascular Access Report to vascular access coordinators and medical directors. The reports display: o Prevalent fistula rates compared to region, state, Network, and United States, o A facility fistula rate ranking, o Graphs displaying one year of prevalent fistula in use, catheter with fistula maturing, catheter <90 days, and catheter >90 days rates. July 10, 2012: A Cannulation Camp was held, co-sponsored by Riley Hospital for Children and IU Health. There were two half-day sessions with 80 attendees for the day. Assessment and cannulation techniques were presented at breakout sessions and presentations were on AVF maturation and maintenance, buttonhole technique, and providing a culture of safety. July 23, 2012: ed surgeons and nephrologists in our Networks providing registration information on a surgeon meeting that was held in New Orleans on August 24, This meeting was hosted by ESRD Network 13. August 31, 2012: ed the July/August E-VAC newsletter to vascular access coordinators, administrators, and nurse managers. The newsletter included Change Concept 12: Modify hospital systems to detect CKD and promote AV Fistula planning & placement, the transition of care form, and the upcoming vascular access best practice webinar. September 14, 2012: ed requested resources to 385 vascular access improvement project facilities. The resources included patient education resources, surgeon education resources, and a link to the 3Ps of Vascular Access Success online tools and resources. September 17 & 18, 2012: A best practice webinar entitled How do we get to 68% AVF: Best Practice Strategies was held. There were 102 participants from

54 Page 49 of 174 Network 9 and 67 participants from Network 10. The webinar was recorded and is housed on the website. October 9, 2012: A Cannulation Camp was held in Chicago, IL. There were 145 attendees at this meeting. Assessment and cannulation techniques were presented at breakout sessions and presentations were on AVF maturation and maintenance, buttonhole technique, and providing a culture of safety. October 24, 2012: ed the September/October E-VAC newsletter to vascular access coordinators, administrators, nurse managers, nurse practitioners, and regional managers. The newsletter included resources to be used for QAPI, the Patient Barriers Questionnaire and information on the CMS QIP vascular access measures. November 5, 2012: ed surgeons and nephrologists in the Networks on announcing a FFBI AV Fistula Creation Best Practice Webinar to be held December 3, 5, and 13, November 12, 2012: ed facility administrators announcing the NANT meeting to be held in New York in December December 7, 2012: ed the November/December E-VAC newsletter to vascular access coordinators, administrators, nurse managers, nurse practitioners, and regional managers. The newsletter included the new 5 Diamonds Constant Site Cannulation module, resources and tools for catheter reduction, and the announcement of a buttonhole cannulation webinar to be held on January 29 and 30, 2013 To promote Fistula First goals continuously, educational resources have been developed which can be easily shared. The Fistula First page on the Network website was updated regularly adding the above mentioned materials as they were provided by mail or . The materials provided to stakeholders were developed both from Networks 9/10 and the national Fistula First Breakthrough Initiative. The Network has acted as a community outreach partner by providing information on Fistula First through conference calls quarterly to state surveyor groups and the quality improvement organizations. Conference Calls, Site Visits, and Presentations. Network staff conducted many individual facility conference calls and also conducted some site visits in Staff also partnered with LDOs to present at physician meetings and quality meetings. Staff also assisted a group of vascular access coordinators in the Cincinnati area to form a coalition to improve vascular access outcomes.

55 Page 50 of 174 January through March, 2012: The quality improvement staff worked, one-onone, via the telephone with 30 QIP facility nurse managers in Network 9 and 24 QIP facility nurse managers in Network 10 providing technical assistance in QAPI processes and requested materials to improve vascular access management outcomes. April through June 2012: The quality improvement staff worked, one-on-one, via the telephone with 28 QIP facility nurse managers in Network 9 and 26 QIP facility nurse managers in Network 10 providing technical assistance in QAPI processes and requested materials to improve vascular access management outcomes. June 5, 2012: Vascular access data for facilities in Cincinnati, Ohio was sent to a surgeon group per request. This group is working with the Network and area nephrologists to improve AV fistula rates. June 5, 2012: Certified letters were sent to medical directors from four Indianapolis, Indiana facilities that are in the regional vascular access improvement initiative. Data was requested as a follow-up to the August 2011 medical director meetings. Requested data was returned to the Network office by June 30, July through September 2012: The quality improvement staff worked, one-onone, via the telephone, , and fax for a total of 650 individual contacts for the quarter. Network staff provided technical assistance in QAPI processes and provided requested materials to improve vascular access management outcomes. August 10, 2012: Met with the vascular access coordinator and vice president of clinical operations for a regional dialysis organization in Cleveland, OH. These two staff represented 17 facilities in this regional organization. Network staff discussed vascular access data for all 17 facilities and identified barriers and resources to assist in vascular access improvement. November 13, 2012: Network staff facilitated a conference call with four Cincinnati area vascular access managers to discuss regional barriers and strategies for improvement including hospital discharge planning and access placement while the patient is in the hospital. November 15, 2012: Network staff partnered with FMC to provide a Vascular Access Summit for Indianapolis, IN nephrologists and surgeons. Topics presented included fistula placement, fistula maturation and maintenance, and vascular access and the QIP. December 18, 2012: The Cincinnati area vascular access managers group met at the University of Cincinnati to continue strategic planning for vascular access

56 Page 51 of 174 improvement in the region. Network staff participated by phone. The group will meet monthly and have named themselves the Greater Cincinnati Area Vascular Access Coalition.

57 Page 52 of 174 E. Network Special Projects/Studies Quality Improvement Work Plan. During 2011, a Quality Improvement Work Plan (QIWP) was developed with the oversight of the MRB and the Board of Trustees. The QIWP described proposed quality improvement projects for March 2011 March 2012 and then through a six month extension of the contract to December The purpose of the QIWP was to describe quality improvement projects (QIP) designed to attain Network goals in these areas: 1. Fistula First 2. Care Transitions (Anemia Management) 3. Decreasing Vascular Access Infection Rates through Surveillance 4. Catheter Reduction For each QIP, the following topic areas were defined: Project Description Background/Justification Root Cause Analysis (RCA) Barriers Identified from RCA Goal for Change Numerator/Denominator Measurement & Frequency Threshold for Action Population Inclusion/Exclusion Criteria Project Design & Methodology Interventions Effectiveness & Sustainability Contacts References Task 1.a Fistula First QIP - The following activities were designed as components of the quality improvement project to attain Fistula First goals and is part of the Quality Improvement Work Plan (QIWP) for the Fistula First initiative. The Task 1.a QIP is based on information provided to the Medical Review Board on May 3-4, 2011.

58 Page 53 of 174 The RCA included the analysis of: The number of facilities included for intervention Fistula First dashboard data Network 9 and 10 facility size comparison Comparing facilities that have made improvement to those that remain the same or have decreased their prevalent fistula rate QIP participant RCAs and action plans Number of facilities included for intervention: In order to determine the number of facilities that would need to be included in any intervention to achieve the assigned fistula rate, we made several assumptions. First we evaluated the historical fistula rate of increase in non-intervention facilities. For the preceding year that value was 0.6 percentage point in Network 9 and 1.0 percentage point in Network 10. We next determined the best intervention increase during the previous year and found that to be near 5.5 percentage points in Network 9 and 5.3 percentage points in Network 10. In order to achieve an increase in both Networks of at least 3.0 percentage points we could determine the number of intervention facilities if we expect a 1.0 percentage point increase in non-intervention facilities and a 5.5 percentage point increase in intervention facilities. Because of the continued diminished improvement rate of the non-intervention group, it was clear that the four (including catheter reduction) proposed intervention groups would: Have to meet or exceed a 5.5 percentage point increase Or Continue to consist of a large number of providers Fistula First dashboard data analysis revealed: The intervention facilities experienced an increase in fistula rate between 1.46 and 5.45 percentage points in Network 9 and between 0.84 and 5.34 percentage points in Network 10. Through this RCA we have learned that targeting more facilities for intervention assists in realizing improvement.

59 Page 54 of 174 The Fistula First dashboard comparing Network prevalent fistula outcomes shows that as the prevalent fistula rate increases the rate of change decreases making it more difficult to realize the larger percentage point increases. A comparison of facility size between Network 9 and Network 10 was conducted to understand the impact of targeting larger sized facilities and determine why Network 10 is increasing at a faster pace: We identified that there is a significant difference between Network 9 and Network 10 in the average size of the facility with Network 10 on average 15 patients larger. Selecting facilities to target based on higher patient census, especially in Network 9, should maximize the impact using larger facilities in improving the prevalent fistula rate. A comparison of facilities that have made improvement to those that remain the same or have decreased their fistula rate was discussed: Intervening on facilities that have made improvements and are making the transition to change will provide continued success in improving the Network fistula rate QIP participant RCAs, action plans, site visits, and conference calls: Facilities need individualized assistance in completing the RCA process based on past Network requested RCA exercises. Facilities need individualized assistance in identifying actions, tools, and process changes to be made to realize improvement based on past Network requested facility action plans. There are regional differences in regards to barriers to fistula placement and usage based on facility action plans, facility site visits, and facility conference calls. The RCA concluded: 1. Future interventions will need to take into account the decreasing return that can be expected as AVF rates increase. 2. The non-intervention group is no longer the major catalyst for improvement. 3. The number of facilities in the intervention groups needs to be large in order to move the Networks to goal. 4. Improvements in fistula rates will require interventions in larger populations of hemodialysis patients.

60 Page 55 of Intervention facilities need to be those that have made improvement and have shown they are ready for the change to continued improvement through action plans and process changes. (Poor performing facilities are targeted for quality assurance interventions including site visitation.) 6. Facilities need continued individualized assistance with the QAPI process to be able to identify their unique barriers to fistula placement and usage and to identify those actions, tools, and process changes that will ensure improvement. The root cause analysis identified barriers to improvement of prevalent fistula rates: The non-intervention group are not achieving rates that move the Network toward goal Past intervention facilities that did not improve the prevalent fistula rate are not contributing to the success of the Network fistula rate Individualized facility assistance with the QAPI process is needed Regional differences need individualized solutions for improvement of fistula placement and usage The Medical Review Board concluded: 1. Previous years project designs have been a successful intervention strategy for improving prevalent fistula rates in targeted facilities continuing the one-on-one contact between Network and dialysis facility staff either through conference calls or on-site visits as necessary, 2. interventions must continue to target greater than 40% of dialysis facilities to better effect Network-wide improvement since the non-intervention facilities are not improving at the rate of past years, and, 3. continued personalized attention in the form of medical director letters, facility site visits, and conference calls is needed to improve fistula rates Network wide. This fistula rate improvement project incorporates an eight-step project model in the three interventions, Positive Performers, Ready for Change, and Early Adopters. The eight steps include: 1. Statistical analysis to identify facilities in need of intervention (facilities with outcomes below 60% prevalent fistulas) and facilities that need extra attention to continue improving fistula rates (facilities with outcomes between 60-65% prevalent fistulas). 2. Conducting root cause analysis with targeted facilities to discover barriers to improvement at the facility and regional level.

61 Page 56 of Requiring action plans that align with facility QAPI projects addressing barriers from each facility targeted for intervention. 4. Providing conference calls for QIP participants and learning sessions for targeted facilities on topics identified through RCA. 5. Collecting facility specific data through the Fistula First dashboard and providing participating facilities with data feedback reports monthly. 6. Identifying benchmark facilities (defined as those facilities with either a fistula rate at goal or increasing by at least one percentage point per quarter) and sharing tools and resources with participating facilities. 7. Continuing to conduct facility site visits and individual facility conference calls for poor performers. 8. Analysis of facility specific data monthly to determine which facilities are successfully achieving QIP goals and which facilities are in need of additional intervention. The three intervention groups in this QIP are: 1. Positive Performers - Network 9 = 32 facilities & Network 10 = 19 facilities >30 Patients Prevalent Fistula Rate 60% as of March 2011 At least a 4 percentage point improvement in fistula rate from March March Ready for Change - Network 9 = 22 facilities & Network 10 = 12 facilities >30 Patients Prevalent Fistula Rate 60% as of March 2011 Had some improvement in fistula rate from March 2010-March Early Adopters - Network 9 = 51 facilities & Network 10 = 29 facilities >30 Patients Prevalent Fistula Rate between >60%-65% as of March 2011 Tasks conducted for these interventions: Facility medical directors, nurse managers, and administrators received an introductory letter outlining their participation based on outcomes and an overview of the project. Facility medical directors, nurse managers, and administrators were given a facility goal to improve by 4 percentage points from March 2011-March 2012 and then 2 percentage points from March 2012-September Facility interdisciplinary teams were asked to complete and submit to the Network a facility scan identifying barriers to fistula placement and use.

62 Page 57 of 174 Facility interdisciplinary teams were asked to complete and submit to the Network an action plan/process Implementation Plan detailing the steps to be taken to improve fistula rates in their facility. Network staff identified specific facilities that needed specific tools and resources and provided them to the facility. A 3Ps toolkit was posted on the Network website providing all available tools electronically that addressed Prevent Catheter, Place Fistula, and Preserve Fistula. Facility interdisciplinary team were directed to the 3Ps toolkit on the website and directed to utilize the best practice materials. Facility interdisciplinary team submitted to the Network updated action plans/process Implementation Plans at least quarterly. Network staff evaluated action plans/process Implementation Plans and provided technical support as needed on an individual facility basis. The project was conducted over a nine month period during July 2011 and March 2012 and then extended through December 2012 with activities that included: Evaluation of facilities monthly prevalent fistula rate increase and monthly feedback reports to medical directors and vascular access coordinators through March 2012 (last data April 2012 due to entering into CROWNWeb). Medical directors received interim outcomes and improvement toward goal quarterly through March 2012 (last data April 2012 due to entering into CROWNWeb). Facility site visits or conference calls for participants that are not making significant improvement toward goal. Evaluation of project progress through the assessment of the facility vascular access management action plan/process Implementation Plan. Additionally, the interventions included the following educational activities: Quarterly QAPI/Vascular Access Management Best Practice Webinars. A Direct Patient Care Giver learning session marketed to all Network facilities. A Webinar designed to engage non-intervention facilities discussing Network data, the 3Ps toolkit, best practices, and goals for improvement. A Webinar designed to engage facilities that did not improve from March March 2011 discussing Network data, the 3Ps toolkit, best practices, and goals for improvement.

63 Page 58 of 174 Network Wide Interventions: There are 200 facilities in Network 9 and 94 facilities in Network 10 that are not participating in the previous described interventions. These facilities either have fistula rates >65% and/or have patient populations of less than 30. These facilities received the resources and tools listed below as part of the Network wide intervention. Each facility medical director and vascular access coordinator in Network 9 and Network 10 received: 1. A monthly outcomes feedback report until March 2012 including: Prevalent fistula rates compared to region, state, Network, and US A facility fistula rate ranking The number of additional patients needed to achieve a 66% prevalent AV fistula rate Graphs displaying one year s worth of prevalent fistula in use, catheter with fistula maturing, catheter <90 days, and catheter >90 days rates 2. Bi-monthly electronic newsletter including: Information on tools for changing facility processes Important aspects of a successful QAPI program 3. Notification/invitation to educational programs: Quarterly QAPI/Vascular Access Management Best Practice Webinars One Direct Patient Caregiver Learning Session including: o a presentation on Assessment and Cannulation of the AV fistula o vascular access management tools and resources 4. The 3Ps Vascular Access Management Toolkit housed on the Network website providing all available tools electronically regarding: preventing catheters placing and using fistula preserving fistula There is a fourth group that is discussed in Task 1.d, Facility Specific Quality Assessment and Improvement Project. This project, Catheter Out/Fistula In: Targeting Catheter Reduction to Increase AV Fistula Rate, while not in Task 1.a specifically, increases the number of facilities that will be focusing on vascular access management and, in turn, will assist in increasing the Network-wide fistula rates: Network 9 has 165 facilities & Network 10 has 57 facilities in this intervention.

64 Page 59 of 174 Goals and timelines for the Fistula First QIP are: Network 9: To increase the prevalence rate of AV fistula usage from 54.2% in March 2011 to 56.6% in March 2012 (an increase of 2.4 percentage points). This goal was met in September Network 10: To increase the prevalence rate of AV fistula usage from 57.2% in March 2011 to 59.0% in March 2012 (an increase of 1.8 percentage points). This goal was met in July This QIP was continued through 2012 but Network vascular access rates were not available after April 2012 due to facility entry into CROWNWeb. Network staff collected facility AV fistula and ALL catheter rates from QIP participants through September 2012 for CMSA evaluation of outcomes. Network staff continued to monitor QIP facilities through December Figures 43 and 44 display the AV fistula percentage point improvement rate results for each intervention group by quarter for March 2011 through April, July, and September 2012 for Network 9 & Network 10. Figure 43. Network 9 Quarterly Interim Outcomes (Percentage Point Improvement) March 2012 Goal March 2011 April 2012 Percentage Point Improvement 56.6% 54.2% 58.0% /2012 Vascular Access Quality Improvement Interventions March 2011 April 2012 Percentage Point Improvement March 2011 July 2012 Percentage Point Improvement Variance from March 2012 Goal +1.4 Met CMS Goal Sept 2011 March 2011 September 2012 Percentage Point Improvement Positive Performers Ready for Change Early Adopters Catheter Reduction Non-intervention 1.81 Not available Not available

65 Page 60 of 174 Figure 44. Network 10 Quarterly Interim Outcomes (Percentage Point Improvement) March 2012 Goal March 2011 April 2012 Percentage Point Improvement Variance from March 2012 Goal 59.0% 57.2% 59.2% Met CMS Goal - July /2012 Vascular Access Quality Improvement Interventions March 2011 April 2012 Percentage Point Improvement March 2011 July 2012 Percentage Point Improvement March 2011 September 2012 Percentage Point Improvement Positive Performers Ready for Change Early Adopters Catheter Reduction Non-intervention 0.77 Not available Not available Task 1.b Care Transitions (Anemia Management) the following activities were designed as components of the quality improvement project to bring awareness to the community regarding hospital to dialysis unit communications and safe handoffs as well as anemia management surveillance. On June 24, 2011, the Food and Drug Administration (FDA) notified healthcare professionals that new recommendations for more conservative dosing of ESAs in patients with CKD and ESRD have been approved to improve the safe use of these agents. The FDA has made these recommendations because of data showing increased risks of cardiovascular events with ESAs in the CKD and ESRD patient population. The new dosing recommendations are based on clinical trials showing that using ESAs to target a Hgb level of greater than 11 gm/dl in patients with CKD and ESRD provides no additional benefit than lower target levels, and increases the risk of serious adverse cardiovascular events, such as heart attack or stroke. The FDA has recommended that healthcare professionals weigh the possible benefits of using ESAs to decrease the need for red blood cell transfusions in CKD and ESRD patients against the increased risks for serious cardiovascular events, and should inform their patients of the current understanding of potential risks and benefits. They also

66 Page 61 of 174 recommend individualizing patient therapy and giving the lowest possible ESA dose to reduce the need for blood transfusions. Following the FDA notification the Centers for Medicare & Medicaid Services (CMS) has also modified the language in its proposed Quality Incentive Program (QIP) to remove the floor on Hgb levels for ESRD patients. The change to the Hgb quality measure would become effective for Due to the new Medicare bundled payment system, the modifications to ESA use from the FDA, and the changes to the CMS QIP it is important that we examine unintended consequences related to low Hgb levels and overly aggressive reductions in ESA usage. The MRB hypothesizes that blood transfusions will increase due to decreased usage of ESAs and the lack of targets for low Hgb or optimal Hgb levels. Transfusions are undesirable because they increase sensitization of recipients to human antigens and thereby decrease the pool of potential compatible donors for organ transplantation to the patient. Transfusions have been associated with communicable diseases such as HIV and Hepatitis B and C, and may be associated with new communicable diseases in the future. Transfusions are associated with iron overload, which was common prior to the introduction of ESAs, and which may lead to organ damage, particularly involving the heart and liver. Fluid overload, hyperkalemia and adverse circulatory and cardiovascular events are also potential risks associated with transfusions. In a previous Network Anemia Management QIP, facility scan responses indicated that providers continue to struggle with consistency and maintenance of ESA dosing when patients are hospitalized. A study by Solid of 71,360 Medicare patients, examined the Hgb /ESA associations in the months immediately before and after hospitalization. In the month preceding hospitalization patients Hgb dropped on average 0.5 gm/dl and average recovery time of Hgb was approximately 2 months with an average of 20% ESA dose increase. Despite these falling hemoglobin levels, very often patients do not receive ESA treatment while hospitalized. A study by Brophy found that in ESRD patients with commercial health insurance, only 13% of patients received an ESA across any length of hospital stay. The most common hospital length of stay was 4-7 days; less than 20% received an ESA.

67 Page 62 of 174 Improving communication between the dialysis center and hospital on prescribed ESA dose and frequency is critical to avoid complications and transfusions while the patient is hospitalized. The absence of sound communication processes provides an opportunity for improvement regarding maintaining ESA dosing during hospitalization episodes to avoid the potential need for blood transfusions. In the event a patient does receive blood transfusions, communication to other care settings is essential. In May 2011, the MRB discussed at length the need for a QIP related to anemia management surveillance and hospital to dialysis facility care transitions. The June 2011 modification in the FDA recommendations regarding ESA dosing brought the MRB back together to analyze the impact of these recommendations on patients, the facility staff, and attending nephrologists. The MRB selected a QIP to develop and utilize an anemia management surveillance program in the adult ESRD population. During the QIP a focus group was used to: develop and test an anemia surveillance program develop and test a care transitions form to conduct safe handoffs with hospitals and other out-patient settings identify best practices regarding anemia management surveillance and care transitions The focus group was successful in the development of the above products and continued this project through December 2012 in order to: complete a care transitions change package consisting of key change concepts, tools, articles, and best practices develop a process for monitoring blood transfusion rates During the QIP the focus group with the participation of the MRB conducted a root cause analysis to understand the barriers to a coordinated care transitions process and decreased ESA dosing in the hospital. This analysis along with discussions with other facility staff identified the issues surrounding anemia management, blood transfusion monitoring, and care transitions. 1. Because there is no target Hgb range it will be difficult to predict what low Hgb level is too low. 2. CMS has not set a floor for Hgb level and has removed any target range that can assist physicians in prescribing ESAs correctly other than the ceiling of Hgb 12 gm/dl.

68 Page 63 of ESAs are not always given in the hospital because: The patient is hospitalized for infection or other disease state that contributes to the ESA resistance Hospitals are not reimbursed for ESAs within a DRG payment system 4. Communication between hospitals and dialysis facilities is lacking in order to provide safe handoffs (care transitions) and decrease hospital re-admissions. 5. Comprehensive blood transfusion surveillance systems in dialysis facilities do not exist. 6. There is an absence of data on facility specific blood transfusion rates. From this root cause analysis the MRB decided to continue this QI initiative through December 2012 and develop a blood transfusion surveillance system and continued development on a care transitions change package. The following methods were used for this project: Facility staffs were given resources to assist with blood transfusion avoidance and tools to assist with the creation of a blood transfusion surveillance program. Facility staff used the hospital to dialysis unit care transition summary for hospitalizations. Focus group participants provided best practice regarding care transitions processes. There are 10 facilities from Network 9 and 10 facilities from Network 10 working on this project. They have been encouraged to identify a hospital staff member to communicate with regarding care transitions. We have also invited the hospital representatives to the monthly conference calls. These conference calls are held to present collected data, discuss barriers to the project, discuss possible solutions to barriers and discuss best practices. Goals for this project: 1) Continue working with the participating facilities to strengthen their care transitions processes through December ) Develop the care transitions toolkit/change concepts that will be tested and then disseminated throughout Network 9 and Network 10. Task 1.c Decreasing Vascular Access Infection Rates through Surveillance the following activities were designed as components of the quality improvement project to monitor and decrease vascular access infections.

69 Page 64 of 174 According to the 2008 US Renal Data System (USRDS), infection is the second most common cause of death after cardiovascular disease in patients on hemodialysis. Up to 1 in 4 patients with a bloodstream infection from central lines will die. (Centers for Disease Control and Prevention [CDC]) Chronic hemodialysis patients are at high risk for a number of healthcare associated Infections (HAIs). According to the CDC, of the 350,000 individuals receiving hemodialysis at any given time, about eight in 10 of these patients started treatment using a central line. Bacteremia and localized infections of the vascular access site are common in hemodialysis patients. In 2008, about 37,000 bloodstream infections occurred in hemodialysis patients with central lines. Staph aureus is the most common pathogen associated with these infections. In the majority of episodes, the vascular access is found to be the source of the infection. Between 1993 and 2006 hospitalization rates for infection rose 34%, and the rate of hospitalization for vascular access infections in hemodialysis patients more than doubled. In 2006, there were 103 admissions per 1000 patient years with the diagnosis of bacteremia/septicemia and 129 per 1000 patient years with the diagnosis of vascular access associated infection. Hospitalizations for patients with a catheter were 15 times higher than for a patient with an AV fistula (2008 US Renal Data System). The 2011 Dialysis Facility Reports included bacteremia rates as reported on inpatient, outpatient and physician supplier claims on Medicare patients from July-December The Network 9 bacteremia rate for catheters was The Network 10 bacteremia rate per 100 catheter months was The National rate was Being aware of vascular access related infections is the first step to decreasing the infection rates. The CMS Conditions for Coverage (CfC) expects the facility staff to have a Quality Assessment and Performance Improvement (QAPI) program related to infection control that would include surveillance information related to vascular access infections and vascular access loss due to infection. The National Recertification Survey ESRD Citation Frequency Report for 2010 calendar year indicates that the majority of the top 25 facility citations were infection control related violations. This presents an opportunity for improvement for Network facilities regarding vascular access infection surveillance.

70 Page 65 of 174 The vascular access infection surveillance information assists staff in: 1) Analyzing and documenting the incidence of infection to identify trends and establish baseline information on infection incidence 2) Developing recommendations and action plans to minimize infections and 3) Taking actions to reduce infection rates. The CDC has a bloodstream infections in dialysis surveillance program titled the National Healthcare Safety Network (NHSN). This program enables facility providers to compare facility rates to national rates using current data. NHSN provides a variety of statistical analysis options that can be used to track, trend, and make improvements to vascular access infection rates. In May 2011, the MRB discussed at length the need for a QIP related to vascular access infection rates in the adult ESRD population. The root cause analysis included the following information: 1) Vascular access infection rate data reported through the USRDS. 2) Central line infection and HAI rate data from the CDC. 3) The National Recertification Survey ESRD Citation Frequency Report for 2010 citing that the majority of the top 25 facility citations were infection control related violations. 4) The 2011 Dialysis Facility Report information on bacteremia rates as reported on inpatient, outpatient and physician supplier claims on Medicare patients. 5) Information gathered from facility site visits. 6) The need for a comprehensive vascular access infection QAPI program as outlined in the CfC. Based on the experience and discussion of the MRB membership, reasons for increased vascular access infections were identified: High number of central venous catheters still in use. Lack of comprehensive vascular access infection surveillance program in place. Since high central venous catheter rates are being addressed in the QIWP Catheter Reduction project (Task 1.d) and in the Prevalent Fistula Rate Improvement project (Task 1.a), the MRB decided to conduct a QIP on vascular access infection surveillance in order to improve vascular access infection rates in the adult ESRD population.

71 Page 66 of 174 The following barriers preventing a dialysis provider from having a comprehensive vascular access infection surveillance program were identified: Lack of basic education regarding the QAPI process Non-engaged Medical Director to lead interdisciplinary team Hospitalization data often difficult to obtain Identifying processes that can be used to make access infection surveillance and QAPI a regular part of the dialysis facility s day-to-day operation. The following methods were used for this project: Eligible hemodialysis facility providers were give technical support to assist with enrollment in NHSN. Eligible hemodialysis facility providers were trained on the use of a hospital to dialysis unit care transition summary for hospitalizations in order to be able to capture all vascular access related infections. Eligible hemodialysis facility providers were asked to report vascular access infection data into NHSN. Eligible hemodialysis facility providers had access to a taped series of NHSN how-to webinars on the website. Eligible hemodialysis facility providers will receive a feedback report based on group comparison data. Goals for this project: Ensure dialysis provider enrollment and data entering into NHSN. The Network will have at least 60% of facility providers enrolled into NHSN by December Facility providers were asked to enter vascular access infection data into NHSN and Network staff assessed the data monthly. The facility staff were also encouraged to join the Network group so Network staff could access their infection data. Network staff identified facility providers that had enrolled in NHSN during the first six months of 2012 and reviewed monthly until December 2012 to assess for progress toward goal. Network staff also identified facilities that had not enrolled to target for communication and intervention. Figure 45 displays the percentages of facilities that had enrolled in NHSN and joined the Network group as of December 2012 for Network 9 and Network 10.

72 Page 67 of 174 Figure 45: NHSN enrollment as of December 2012 Network Facilities Enrolled Goal Joined Network Group NW9 95% (Met Goal) 60% 71% NW10 91% (Met Goal) 60% 56% Task 1.d Catheter Out/Fistula In: Targeting Catheter Reduction to Increase AV Fistula Rate The following activities were designed as components of the quality improvement project to decrease facility catheter rates and increase facility AV fistula rates. Participating facilities had an ALL catheter rate of >25%, a prevalent fistula rate of <60%, and >30 patients for March The 25% ALL catheter rate is equal to or higher than the Network rate (Network 9=25.6% & Network 10=24.0%). Network 9 has 165 facilities participating and Network 10 has 57 facilities participating in this QIP as part of the Facility Specific project of the QIWP and will continue through December From March 2011 to March 2012, Network 9/10 conducted a successful facility specific ALL Catheter Reduction QIP. The objectives were to assist facilities in the development and implementation of appropriate clinical processes to ensure appropriate and timely referral for a permanent access, processes to ensure the placed fistula becomes useable, a sleeves up and secondary fistula protocol, protocols to preserve fistula through assessment and cannulation, and decreasing patients with catheters as the primary vascular access for 90 days or greater. The interventions for this QIP consisted of: providing resources and tools related to ALL catheter reduction development of a facility vascular access team development of QAPI processes designed to monitor ALL catheter patients development of facility specific action plans attendance at Network sponsored learning sessions attendance on conference calls as needed for technical support The QIP achieved the stated goal in Network 9 with 110 out of 165 (66.7%) of facilities reducing their number of patients with ALL catheters by 10%. Network 10 was also successful with 37 out of 57 (64.9%) of facilities reducing the number of patients with ALL catheters by 10%. This project will continue assessing outcomes in the original 165

73 Page 68 of 174 facilities participating in Network 9 and the 57 facilities participating in Network 10 through the end of High catheter use for dialysis is associated with increased infection, clotting, morbidity, mortality, hospitalization, and cost. KDOQI guidelines recommends: that a fistula be placed at least six months before the anticipated start of HD treatments, that <10% of prevalent patients should be dialyzing with a catheter only for >90 days, and, that a fistula maturation program should be in place to evaluate the maturing access no later than six weeks after access placement and to detect early access dysfunction, particularly delays in maturation. A facility that has a large percentage of patients with catheters (counting all types) points to inadequate processes in place for ensuring patients have an AVF. This poses the potential for providing suboptimal patient care. Catheter reduction is being targeted by two Large Dialysis Corporations (LDO) and the national Fistula First Breakthrough Initiative through Change Concept #7 AVF Placement in Patients with Catheters Where Indicated. This was developed as a QI toolkit through the Forum of ESRD Networks MAC. Coordinating our QIP with these efforts increases the likelihood of spreading a consistent message to dialysis providers and ultimately achieving goals. Staff and MRB members conducted a root cause analysis that included the following: 1. An analysis of March 2011 and 2012 Fistula First dashboard data. 165 hemodialysis facilities in Network 9 have a patient population of at least 30, >25% of their prevalent patient population dialyzing with a catheter, and 60% prevalent fistula rate 57 hemodialysis facilities in Network 10 have a patient population of at least 30 and >25% of their prevalent patient population dialyzing with a catheter, and 60% prevalent fistula rate 2. Review of facility action plans, site visits and conference calls. This information revealed that the dialysis facilities: did not have a tracking mechanism or data collection tool established for patients with catheters

74 Page 69 of 174 did not have catheter to fistula pathways that would assist with vascular access management did not have a non-maturing AV fistula algorithm in place to ensure timely referral for intervention 3. Review of past QIP interventions and results to determine if the approaches could be effective. Results of the RCA concluded: 1. The interventions in the and ALL Catheter Reduction QIP successfully met goal as did the Catheter Reduction group in the Task 1.a initiative. 2. Facility staff needs assistance with the identification of facility specific increased catheter root cause. 3. Facility staff needs to be educated on acting in a timely manner to place permanent access and remove catheters. 4. Facility staff must have a process for collecting and tracking patients with catheters. 5. Facility protocols are effective in decreasing catheters and increasing fistulae. The root cause analysis identified three barriers to successfully decreasing catheters: 1. Lack of a quality assessment and performance improvement (QAPI) process to collect and track patient catheter rates. 2. Lack of a facility specific root cause analysis within their QAPI process to identify reasons for increased catheter rates. 3. Lack of policies and algorithms to monitor and adjust processes of care to improve vascular access outcomes. The project design for this QIP includes: 1. Providing quality improvement tools to facilities in the QIP for tracking and analyzing data 2. Providing educational WebEx meetings and other educational offerings such as cannulation camps and topics on CKD vascular access best practices during regional learning sessions 3. Collecting data from facilities monthly and reporting facility specific data to facilities quarterly as data is available 4. Creating best practice models that compare process measures of high performing facilities with that of QIP participants 5. Providing one on one technical support from Network staff as needed

75 Page 70 of Collecting facility Process Implementation Plans 7. Conducting calls with facility medical director & staff, Network staff and MRB physicians as necessary Head nurses and medical directors of participating facilities were expected to work with Network staff to review facility-level data monthly to track progress toward goal. These facility staff submitted to the Network a Process Implementation Plan that provided the percentage of prevalent patients using an AV Fistula and the percentage of prevalent patients using a catheter for dialysis. This Process Implementation Plan also described newly identified processes and activities already under way to improve vascular access outcomes and barriers to improvement. These plans assisted Network staff in directing the facility staff to individualized actions, tools, and process changes. The Process Implementation Plans were updated and submitted to the Network monthly. Specific intervention activities include: 1. Facility medical directors, nurse managers, and administrators received an introductory letter outlining their participation based on outcomes and an overview of the project. 2. Facility medical directors, nurse managers, and administrators were given a facility goal to decrease the percentage of prevalent patients dialyzing with a catheter by 1.0 percentage points from March 2012-September Facility interdisciplinary team were asked to complete and submit to the Network a Process Implementation Plan describing newly identified processes and activities already under way to improve vascular access outcomes. 4. Facility interdisciplinary teams were asked to complete and submit to the Network updated Process Implementation Plans monthly. 5. Network staff identified specific facilities that need specific tools and resources and provide them to the facility. 6. A 3Ps toolkit is posted on the Network website providing all available tools electronically that will address Prevent Catheter, Place Fistula, and Preserve Fistula. 7. Network staff evaluated Process Implementation Plans and provided technical support as needed on an individual facility basis.

76 Page 71 of 174 The project was continued over the six month contract extension period from July December 2012 with activities that included: Evaluation of facilities monthly prevalent catheter rate decrease and monthly feedback reports to medical directors and vascular access coordinators as data was available. Medical directors received interim outcomes and improvement toward goal quarterly as data was available. Facility site visits or conference calls for participants that are not making significant improvement toward goal. Evaluation of project progress through the assessment of the facility process Implementation Plan. Additionally, the intervention included the following educational activities: Quarterly QAPI/Vascular Access Management Best Practice Webinars. Regional Cannulation Camps in Indianapolis, IN, Columbus, OH, and Chicago, IL. Goals for this project: During this six month contract extension, the targeted facilities in both Network 9 and Network 10 will decrease their group ALL catheter rate by 1.0 percentage point by September Interim goals will be a decrease in the group ALL catheter rate by 0.17 percentage point monthly and 0.5 percentage point quarterly. Targeted facilities will continue to be monitored through December Figure 46 and Figure 47 display the results of the prevalent patient ALL catheter reduction quarterly for March 2012 through September 2012 for Network 9 and Network 10.

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78 Page 73 of 174 F. Focused Quality Assurance Activities As a complement to the wide ranging quality improvement initiatives of The Renal Network, focused interventions were conducted to provide more direct contact between the Network and facilities failing to meet Network goals. 1. Fistula First. There are four focused intervention projects included in Fistula First (FF) activities. The projects are: 1. Positive Performers 2. Ready for Change 3. Early Adopters 4. Catheter Reduction These projects are described at length with figures displaying progress toward goals in section 3.E. 2. Facility Intervention Profiling System. Using data routinely reported to the Network, the MRB utilizes the Facility Intervention Profiling System to analyze all available aspects of quality of care. The facility profiling process is designed to identify facility outliers in order to assist in improving quality of care. The process assigns weighted points to quality indicators, based on the indicator s importance to patient care. Data used for the profile includes: fourth quarter sample provided by the lab data collection Standardized Mortality Ratio (SMR) Standardized Hospitalization Ratio (SHR) vascular access data grievances and complaints compliance with Network reporting requirements. Point levels & actions included: No points: notification of job well done 1 9 points: notification of points received, no response required. 10 to 39 points: facility internal review requested. 40 to 49 points: MRB required facility review and action plan submitted to the Network.

79 Page 74 of 174 Greater than 50 points: MRB required facility review, action plans, and site visit if no improvement is achieved by the facility. The Network intervenes with any facility acquiring a total of 40 or more points. Any facility acquiring more than 40 points for three consecutive years is subject to a site visit. The MRB continues to review the elements used to calculate the points. Revisions for the 2011 profile were based on 2010 data. Suggested quality indicator point levels are detailed in Figure 48. Figure 48. Intervention Profiling System - Suggested Quality Indicator Category Criteria Points Anemia Falling out of the expected in all 3 ranges of hemoglobin: <10, 10 12, >12 gm/dl Adequacy (Hemodialysis) 2 std dev below the Network average for both URR & Kt/V SMR SMR >1.0; P value <.05 Worse than Expected on DFR SHR Top 5% of Network with >25 patients 10 Vascular Access Data Compliance < 40% Fistula < 40% Fistula & > 30% Catheters >40% Catheters Annual Survey-not done PARs-1 point for every missed PAR 2728 & point for every late form Fistula First Reporting 2 points each month missed th Quarter Data Reporting Data not submitted Grievances (points varies) Assigned by MRB based on severity 15 max Involuntary Discharges Points for IVDs not reported to TRN Grievance Process. Most activities related to the Network complaint and grievance process provide direct and focused intervention between the Network and the dialysis provider. When a complaint is filed, the Network intervenes to help resolve the complaint between the patient and the dialysis provider. With the patient s permission, the Network contacts the provider to discuss the issue and suggested resolutions as appropriate. The Network also provides

80 Page 75 of 174 additional resources to the patient and provides coaching assistance on problem- solving and communication skills as needed. The Network follows up with the patient to determine that the issue has been resolved and that no new issues have developed. As appropriate, the Network requires the facility of the complainant to submit patient records and documentation of their interventions. In the course of the examination of a grievance, the Network Medical Review Board Grievance Subcommittee is involved and reviews all documentations and determines the outcome of the grievance. The facility processes are examined, as well as documentation from both the grievant and the facility. When deficiencies are noted, corrective action plans are developed and monitored by the Network. Additionally, the analysis of grievance data often produces topics for quality improvement such as the Barriers to Outpatient Dialysis project, which is described in Goal 2. Complete details on the Network grievance process can be found in Goal 3.

81 Page 76 of 174 GOAL 2: Improve the independence, quality of life, and rehabilitation of individuals with ESRD through transplantation, use of self-care modalities, in-center self-care, as medically appropriate, through the end of life. The Network maintains the Patient Leadership Committee (PLC) to work with the Patient Services Department to assist in the implementation of programs to benefit individuals with end-stage renal disease. Additionally, the Medical Review Board and the Board of Trustees each have positions dedicated to patient representation to ensure the voice of the beneficiary is heard at every level of governance. The MRB has three patients representatives and the Board of Trustees has four patient representatives. Through the efforts of the volunteers on these committees and working with the Network staff, a variety of approaches to address complaints and foster independence, encourage transplantation and self-care, and improve quality of life for the individual with end-stage renal disease are ongoing. These include educational initiatives and activities to examine current methods in delivery of care, with an eye toward improving the current standards.

82 Page 77 of 174 A. New Patient Packet In 2012, the Patient Services Department continued to coordinate the New Patient Packet program. During the year, the Network Coordinating Center (NCC) sent out a combined total of 12,728 New Patient Packets to patients in Network 9 and patients in Network 10 (8,087 in Network 9 and 4,641 in Network 10). Out of the 12,727 packets, 12,059 packets (approximately 95%) reached new ESRD patients without error. The actions related to the delivery of New Patient Packets are summarized in Figure 49. Reasons for error included: Incorrect address, Post Office forwarded to correct address Incorrect address, no forwarding address provided Patient Deceased Patient Identification Issues Figure New Patient Packet Activity New Patient Packets Network 9 Network 10 Total Total New Patient Packets Sent Packets Delivered Without Error Packets Returned For Correction New Patient Packets Forwarded by Post Office Deceased Patient from Packets Forwarded Deceased Patients Identified by P.O. Resolution of Required Correction: Deceased Patients Beyond Network Control New Patient Packets Returned & Corrected by Network Office Packets Undeliverable, Beyond Network Control The acceptable return rate for all new patient packets is under7% and the average is 5.26%.

83 Page 78 of 174 B. Resources & Opportunities for Beneficiaries 1. Educational Information & Activities. To encourage independence, improve quality of life, self-care and transplantation, Network 9 and Network 10 staff members continuously work to promote understanding of end-stage renal disease and its impact on the ESRD patient and family. The following activities were conducted during Patients participated on Network committees including the Board of Trustees, the MRB, the Rehabilitation Committee and the Patient Leadership Committee. Throughout the year, information about the PLC as well as other patient resources were sent to patients and staff who expressed an interest in becoming involved with any of the programs. In addition, information was available on the Network web site and in the patient newsletter, Renal Outreach. Patients throughout the Network applied for the 2012 Robert Felter Memorial Award by writing about how they cope with kidney failure and how they volunteer to help others. A committee made up of Patient Leadership Committee members and Network staff reviewed nine applications, four from Network 9 and five from Network 10, and selected one recipient for the award from the Network 9 area and one recipient for the award from the Network 10 area. One of the recipients attended the 2012 AAKP Annual conference and then wrote an article for Renal Outreach, the patient newsletter, sharing their experiences and information that he had learned. In addition, he attended and presented at one of the Patient Empowerment Workshops. The Renal Network, Inc. collaborated with Indiana University to provide two Patient Empowerment workshops in Members of the Patient Leadership Committee served on the planning committee and two members were speakers at the workshops. There also was a physician meeting directed towards physicians and their staff that encouraged them to engage their patients in treatment options. Both of the PLC speakers also participated in the physician meeting. The Network developed and/or updated the following resources and made them available to patients, through direct mail, the facilities, and/or on the Network websites: a) Quality of Care Poster that shared how patients can contact the Network with concerns or grievances;

84 Page 79 of 174 b) In collaboration with Network 15, a Network PLC member presented an audio recording of an article on compliance that she had co-authored and that was used for NW 15 s Renal Tip Line. The Renal Network patient population was also given access to all of the Renal Tip Line topics; Network resources were sent when requested and most resources were available for download from the Network websites. The following resources were most frequently sent: Grievance Poster (779), DPC Toolbox (68), DPC Poster (55), Patient Empowerment Meeting Materials given out: Renal Outreach (18), Renal Outreach Subscription Form (46), Ease the Ouch (22), Article by former PLC Member (21), Learning to Live with Kidney Disease (16), Web Based Information for TRN (12), How do I Look (18), Rehabilitation Brochure (2), DFC (15), Be Safe (15), IVD Process (14), Challenging Situations (24), Nursing Home Handout (17), Renal Outreach Articles on: Managing Thirst (12), Depression (12), Do you have a Complaint (11), Patient Advocates (5) During the year the Network published two issues of the Renal Outreach, a newsletter dedicated to individuals with end-stage renal disease. Approximately 5,450 copies of each edition were distributed and 127 copies were distributed electronically. The Spring 2012 edition included the following Articles: a) My Fistula Journey b) Ask a Dietitian: Losing Weight When You re on a Renal Diet c) The 2011 Felter Award Winner Report: Mr. McFarlin Goes to Little Rock d) Working Girl e) How Can We Help Survey f) Medicare Part D g) ESRD Quality Incentive Program h) DFC i) Treatment Options j) Missing treatment Is it worth the Risk? k) The Role of the ESRD Network The Fall 2012 edition included the following articles: a) Living and Working on Dialysis b) Emergency Preparedness c) Healthy Living Tips d) Beat the Flu Bug e) Lifeline: Hemodialysis Vascular Access f) Medicare Part D

85 Page 80 of 174 g) Make a Medical Plan and Talk About It (advance directives) h) Every Minute Counts (adherence) i) Role of the Network j) If You Have a Concern k) Online Resources l) Dialysis Facility Compare m) Hygiene Needs of Patients with Catheters n) I Choose Live. The Winter 2012 edition included the following articles: a) Transplant: What You Need to Know b) Help Protect Your Loved Ones: Do the Wave (infection control) c) On Dialysis How Long? New Technologies: Treatment for PKD d) Transplant: Financial Help is Available e) Patient LAN: We Need You f) Grievance Process g) The 2012 Robert Felter Award h) Role of the Network i) What Treatment Option is Best for Me? In 2012, the Network shared resources available through other organizations which included: In February, information about NKDEP resources in Spanish as well as information about a brochure on high blood pressure and diabetes was sent to all facilities. In February, information about NKDEP resources for World Kidney Day and other resources about connection to heart disease was sent to 428 social workers and 698 nurses. In March, in support of Dialysis Patient Citizens sent information about DPC conference call on how to shop at grocery store and how to make good choices when eating out to 394 dietitians and 703 head nurses. In June, sent resources from NKDEP on nutritional resources which are also available in Spanish and resources in video format on kidney disease and dialysis to share with patients. These were sent to 408 dietitians, 460 medical directors, 451 administrators, 721 head nurses, and 432 social workers. In June, the Network promoted DPC Patient Education Call on empowering patients to ask questions by sharing flyer with 451 administrators, 721 head nurses, and 432 social workers to give to patients.

86 Page 81 of 174 In July, the Network sent flyer announcing AAKP annual conference and scholarship information to 433 social workers and 721 head nurses to share with patients. In July, the Network promoted NKDEP resources on food safety and healthy eating with high blood pressure or diabetes to 409 dietitians to share with patients. In August, the Network promoted a support group meeting on eating less salt by sharing the flyer with the facilities in the area of the meeting (3 facilities) to share with patients. In September, the Network promoted NKDEP resources aimed at reducing salt intake in children to 431 social workers, 451 administrators, and 721 head nurses. In October, the Network sent information and Medicare links regarding Medicare Open Enrollment Period to 433 social workers 2. Website: Kidney Patient News ( The Renal Network, Inc. maintains a website dedicated to information for renal patients, family members or anyone interested in renal disease: All resources and newsletters are kept on the website. The site is useful as a monitoring tool. Web hits and page downloads are monitored monthly to ensure that the information on the Web is being viewed. Details on Web activities are listed in section Goal 4, A.2.

87 Page 82 of 174 GOAL 3: Improve patient perception of care and experience of care, and resolve patient complaints and patient grievances. The Renal Network provides a voice for the ESRD beneficiary through the complaint and grievance resolution process. Patients and family members may choose to discuss with the Network staff any issues they are experiencing with their dialysis care. The Network staff works to resolve concerns as they are identified. With the patient s permission, Network staff members provide counseling and mediation to patients and dialysis facilities when conflict occurs. Patients may also choose to file a formal grievance. In this process, the complaint is officially addressed to the dialysis provider, and both sides of the issue are heard at the MRB level. The MRB makes the final determination in a formal grievance.

88 Page 83 of 174 A. Concerns & Complaints. Complaints are received in the Network office through direct contact with the beneficiary, through a telephone call, or a written letter. The Network maintains a user-friendly, toll-free line ( ) to encourage patients to contact the office directly. Tracking of complaints received are reported through the CMS quarterly report format as complaint investigations or grievances. Investigations are the result of complaints brought to the attention of the Network through a variety of means. Network staff attempt to intervene as soon as a complaint is received. Often, the Network staff member acts as a mediator between the dialysis facility and the patient to objectively work out problems. Patient Services staff members also coach patients on positive ways to approach and communicate with facility staff, provide resources and accurate information regarding concerns, help patients to see the caregiver viewpoint, discuss coping skills and provide assistance and referrals as needed. In addition, Network staff discusses patient rights and responsibilities, options for care, and the facility complaint process. The facility is contacted regarding a patient complaint when the patient gives permission to do so. Interventions with staff include mediating with facility and corporate staff, addressing their related patient care concerns, exploring root causes of concerns, helping them to see the patient s viewpoint, reviewing facility policies and procedures, reviewing medical records, recommending interventions, discussing modality options, coaching staff on de-escalation techniques and suggesting in-service training programs for their staff. During 2012, Network staff members were called upon to assist with 66 patient complaints in Network 9 and 39 complaints in Network 10. The top primary and secondary concerns for 2012 were staff-related issues and quality of care issues, which have consistently been the primary areas of concern for the past several years. This is detailed in Figure 50 and Figure 51. The Network uses this information to develop resources for patients and staff, as well as for educational articles in the patient newsletter, topics for patient meetings and presentations and training programs for staff.

89 Page 84 of 174 Figure 50. Network 9 Trending of Complaints and Top Complaints Year Number of Complaints Staff Related Complaints Treatment Related/Quality of Care Complaints Figure 51. Network 10 Trending of Complaints and Top Complaints Year Number of Complaints Staff Related Complaints Treatment Related/Quality of Care Complaints The Network also examined the staff-related and quality of care complaints in more detail to determine the specific areas of concerns. Professionalism was the top area of concern in both Networks in the staff-related category (See Figure 52) and Communication and Staff Relationships, which relate to Professionalism, were also frequent areas of concern. Patient Safety/ Health issues were the primary concerns in both Networks related to quality of care concerns. (See Figure 53)

90 Page 85 of 174 Figure 52. Staff-Related specific beneficiary concerns for 2012 Professionalism Communication Clinical Competency Staff/Patient Ratio Physician Relationship Staff Relationships Other Figure 53. Treatment-related specific beneficiary concerns for 2012 Access Issues Facility Policy/ Procedure Physician Order Scheduling Issues Supplies/ Equipment Infection Control Patient Safety/Health Other Network interventions for staff-related complaints in both Networks are detailed in Figure 54 and include interventions with both patients and facility staff. Overall, the Patient Services staff affirms the patients feelings, helps them to brainstorm and problem solve the issues, coaches them on communication techniques and empowerment, and provides educational resources to assist them. Interventions for treatment-related concerns in both Networks are detailed in Figure 55 and also include assistance to both the patients and the facility staff. These interventions include teaching patients about their rights and responsibilities, available resources as well as effective communication techniques. Figure 54. Network Interventions: Staff-Related Concerns NW Interventions with Patients Communication techniques Empowerment techniques Educate on facility policy and operations Provide empathy, affirmation, and advocacy Problem solving / brainstorming Coaching on issues Discuss coping skills Offer to mediate with staff Provide referrals and resources NW Interventions with Staff Mediate with staff Conference calls with corporation Discuss care plan meetings, patient concerns, and involvement of all staff Encourage reassessment of care plan interventions Patient-centered care Coach staff on de-escalation Identify root causes of complaints Suggest in-service training

91 Page 86 of 174 Figure 55. Network Interventions: Treatment-Related Concerns NW Interventions with Patients Educate about the CfC, including Patient Rights/ Responsibilities Discuss quality of life on outcomes Provide educational materials Coach patient on communication skills and meeting with staff Review treatment options Patient empowerment skills Provide referrals Mediate with staff NW Interventions with Staff Address working with diverse cultures and backgrounds of patients Communication techniques and affirming patient, empathy Recommend training in infection control, cannulation, conflict management, professionalism, patient safety Recommend development of facility procedures Discuss treatment options The Patient Leadership Committee worked on the development of a draft handout on professionalism from the patients viewpoint for staff in It will contain slides that can be used for both patient and staff in-service programs at the facility level on professionalism. In addition, the Network continued to address the issues of professionalism and communication, and referred facilities to training programs on the topic which are described in Section G. Support and Mediation. The Network, when it mediated with facilities, frequently recommended that they conduct their own inservice training programs on professionalism, mental health issues, hand hygiene and communication skills.

92 Page 87 of 174 B Formal Grievances: Grievances are formal, written complaints usually filed by patients or their representatives, or by facilty staff members. A special subcommittee of the MRB is designated to review grievances, determine their outcome and make recommendations to the facilties and patients. Over the years, the number of grievances has remained relatively low. The Network staff works diligently to resolve complaints and grievances thoroughly and as quickly as possible. During 2012, there were no grievances filed in Network 9 or Network 10. The Network provides a number of interventions and follow up at the complaint level and none of the complaints reached a level where a patient wanted to file a formal grievance. The Network also trends grievances over time and looks for any trends by facilities, which to date there are none. See Figure 56. Figure 56. Grievance Trends: Year Number of Grievances Staff Related Patient Transfer/Discharge Treatment/ Quality of Care Network Through the MRB, the Network analyzes facility-specific complaints and grievance data to identify patterns of concerns at the facility or Network level. It is believed that following up with patients regarding their complaints as well as working with the facilities when permission is granted, has contributed to the decrease in grievances.

93 Page 88 of 174 C. Facility Concerns Regarding Patient Issues: Network staff assisted facilities with their concerns about patient issues. In Network 9, the Network received 261 facility concern calls and 120 calls in Network 10. The most frequent concerns were related to patient discharges and noncompliance in both Networks. The facilities are required by the Conditions for Coverage to contact the Network regarding involuntary discharges and the Network encourages facilities to contact the Patient Services Department when patients become at risk for discharge. See Figures 57 and 58. Figure 57. Network 9 Trending of Facility Concerns and Top Facility Concerns Year Number of Facility Concerns Patient Transfer Discharge Non-Compliance Figure 58. Network 10 Trending of Facility Concerns and Top Facility Concerns Year Number of Facility Concerns Patient Transfer Discharge Non-Compliance The Network further investigated the reasons for subcategories of concerns that were available in the Network Contact Utility (NCU), such as noncompliance. Missed treatment was the most frequent concern in this category. See Figure 59 for a breakdown of the reasons for noncompliance.

94 Page 89 of 174 Figure 59. Reasons for Non-Compliance by Category 2012 Missed Treatment Missed Facility Appointments Prescribed Treatment not followed Refused Treatment Shortened Treatment Misses VAC Access Appointments NW NW Other Network staff helped facility staff understand patient issues from different viewpoints, identified alternative approaches to resolve issues, and identified and discussed root causes of behavior. The Network also provided suggestions for working with nonadherent patients, handling conflicts, improving communication skills, developing health care team agreements, developing patient letters, and using mental health resources. The Network educated staff on professionalism, staff boundaries, and the Conditions for Coverage, frequently on the sections of Patient Rights and the Involuntary Discharge Process. The Network also provided tools and additional resources to assist staff to resolve challenging situations and encouraged them to conduct in-service training programs for their staff. Details on these activities are described in Section G. Support and Mediation. Overall, the total number of facilities seeking assistance from the Network has remained steady declining slightly over the last year. See Figures 60 and 61. The primary facility concerns have remained consistent over time with callers seeking assistance for challenging patient situations. It is believed that the facilities feel they benefit from the assistance, suggestions and resources provided by the Network. Figure 60. Network 9 Top Primary Facility Concerns Year Number of Facility Concerns Patient Transfer/Discharge Non- Compliant Disruptive Request for Technical Assistance

95 Page 90 of 174 Figure 61. Network 10 Top Primary Facility Concerns Year Number of Facility Concerns Patient Transfer/Discharge Non- Compliant Disruptive Request for Technical Assistance During 2012, the Network provided training programs for staff on ways to work with challenging situations and to provide training for their staff. Details on these activities are described in Section G. Support and Mediation. The Network also reviewed the concerns of facilities quarterly and identified available resources and areas where resources need to be developed. For example, the Network provided suggestions for draft letters that facilities could adapt to correspond with non-adherent patients and a Patient Check List that facilities could adapt to send to patients to identify the reasons they were not coming to treatment.

96 Page 91 of 174 D. Involuntary Discharges The Network has gathered information consistently for the past seven years regarding patients who were discharged from facilities. Beginning in 2011 and continuing in 2012 the facilities were required to contact the Network when they discharged a patient and they were encouraged to contact the Network before the discharge to attempt to avert it. See the trends of discharges in Figure 62. Figure 62. Trends of Involuntary Discharge Year Network 9 Network In Network 9, 31 patients were discharged in 2012 and 16 patients were discharged in Network 10. In both networks, the primary reason for discharge was immediate and severe threat. See Figure 63. Figure 63. Reasons for Involuntary Discharge 2012 Network 9 Network 10 Non-Payment 1 Non-Payment 1 Facility may not be able to meet medical Needs 1 Facility may not be able to meet medical Needs 0 Ongoing Disruptive and Abusive Behavior 4 Ongoing Disruptive and Abusive Behavior 2 Immediate Severe Threat 16 Immediate Severe Threat 7 Termination by Physician No Show 3 Termination by Physician No Show 1 Termination by Physician Medical Non- Compliance 0 Termination by Physician Medical Non- Compliance 0 Termination by Physician Other 0 Termination by Physician Other 0 Other 0 Other 0 Averted 6 Averted 5 Total 31 Total 16

97 Page 92 of 174 Facilities are encouraged to contact the Network when a patient is at risk of discharge so there are more opportunities for intervention earlier. When a facility reports an involuntary discharge, the Network staff reviews the involuntary discharge process as described in the Conditions for Coverage with the facility staff and discusses threats and safety issues as needed. When a facility discharges a patient, the Network requires the facility to send in documentation that the patient has been notified, that the medical director has been involved and approved the discharge, documentation of ongoing efforts to work with the patient to resolve the issues, and documentation of the patient s reassessment. The Network also requests documentation of attempts to relocate the patient and that the state survey agency has been notified. Quarterly, the Network notifies the state survey agency of facilities in their respective states that have discharged patients and the reasons for the discharges. The Network identified which facilities did not contact the Network and then it contacted those facilities to educate on the IVD process. The demographics for the patients discharged from Network 9 in 2012 were disproportionate for males, blacks, and patients between the ages of years of age as well for patients years of age. There was no significant correlation between the groups. In Network 10, the demographics also were disproportionate for blacks, males, and patients between the ages of and years of age. There also appeared to be no significant correlation between the groups. See Figures 64 and 65 for more detailed information. Figure 64. Involuntary Discharge Demographics Network 9 YEAR TOTAL < >74 Male Female Black White Involuntary Discharge Percentages YEAR < >74 Male Female Black White % 52% 15% 6% 75% 25% 58% 42% % 43% 14% 10% 81% 19% 57% 43% % 29% 8% 5% 55% 45% 55% 45% % 50% 13% 8% 83% 17% 50% 50% % 64% 0% 2% 80% 20% 62% 38% % 55% 10% 3% 71% 29% 61% 39% Network 13% 41% 23% 13% 55% 45% 33% 65%

98 Page 93 of 174 Figure 65. Involuntary Discharge Demographics Network 10 YEAR TOTAL < >74 Male Female Black White Involuntary Discharge Percentages YEAR < >74 Male Female Black White % 55% 0% 0% 70% 30% 65% 35% % 69% 8% 8% 65% 23% 58% 42% % 63% 4% 4% 67% 33% 63% 38% % 80% 0% 10% 70% 30% 50% 50% % 80% 0% 0% 60% 40% 80% 20% % 56% 19% 6% 63% 37% 81% 19% Network 14% 40% 23% 23% 56% 44% 41% 54% At the end of 2012, the Network investigated the current status of patients who had been discharged during the year. Seventy one percent of the patients in Network 9 had transferred to another facility and sixty-three percent of the patients in Network 10 had transferred to another facility. See Figure 66. Figure 66. Status of Discharged Patients in 2012 Network 9 Network 10 Summary of Patient Current Status 1. Returned to Discharge Facility 1 2. Transferred to another Facility 22 Summary of Patient Current Status 1. Returned to Discharge Facility 2 2. Transferred to another Facility Deceased 2 3. Deceased 0 4. Still needs a new facility 6 4. Still needs a new facility 3 5. Recovered Function 1 Total Discharge events listed: 31 Total Discharge events listed: 16

99 Page 94 of 174 E. Patients At-Risk for Involuntary Discharge The Network has tracked patients at risk for being discharged for the past four years. In Network 9, there were 63 contacts to the Network regarding patients at risk for being discharged and 22 contacts regarding patients at risk for being discharged in Network 10. The primary reason for being at risk in both Networks involved ongoing disruptive and abusive behavior. See Figure 67. Figure 67. Reasons for At Risk for Involuntary Discharge 2012 Network 9 Network 10 Non-Payment 7 Non-Payment 3 Facility may not be able to meet medical Needs 6 Facility may not be able to meet medical Needs 2 Ongoing Disruptive and Abusive Behavior 20 Ongoing Disruptive and Abusive Behavior 10 Immediate Severe Threat 8 Immediate Severe Threat 3 Termination by Physician No Show 9 Termination by Physician No Show 1 Termination by Physician Medical Non- Compliance 6 Termination by Physician Medical Non- Compliance 1 Termination by Physician Other 2 Termination by Physician Other 0 Other 5 Other 2 Total 63 Total 22 The demographics of patients at-risk for discharge are similar to those patients who have been discharged. In Network 9, a disproportionate number of younger and middle aged patients, males, and blacks were at-risk for being discharged. In Network 10, a disproportionate number of younger, middle-aged patients, and blacks were at risk for being discharged. There was less of a gender difference in Network 10. See Figures 68 and 69.

100 Page 95 of 174 Figure 68. At-Risk for Involuntary Discharge Demographics Network 9 YEAR TOTAL < >74 Male Female Black White At-Risk for Involuntary Discharge Percentages YEAR < >74 Male Female Black White % 35% 23% 6% 68% 29% 32% 65% % 61% 12% 2% 66% 32% 37% 61% % 64% 7% 0% 64% 36% 45% 55% % 54% 10% 0% 65% 35% 52% 48% Network 13% 41% 23% 13% 55% 45% 33% 65% Figure 69. At-Risk for Involuntary Discharge Demographics Network 10 YEAR TOTAL < >74 Male Female Black White At-Risk for Involuntary Discharge Percentages YEAR < >74 Male Female Black White % 68% 4% 8% 64% 36% 40% 60% % 65% 5% 15% 65% 35% 65% 35% % 64% 0% 0% 80% 16% 44% 48% % 50% 14% 5% 50% 45% 73% 23% Network 14% 40% 23% 23% 56% 44% 41% 54% When facility staff contacted the Network about patients at risk for being discharged, the Network reviewed the Conditions for Coverage and the involuntary discharge process with them. The Network worked with facilities to avoid involuntary discharges whenever possible. The Network staff held conference calls, discussed alternative approaches with upper management in corporations, discussed root causes of behavior and provided suggestions to alleviate inappropriate behaviors of patients. The Network staff reviewed health care team agreements (behavior contracts), discharge letters, medical records and reviewed the steps of the involuntary discharge process with facilities.

101 Page 96 of 174 When appropriate, the Network also discussed mental health issues, anger management, non-adherence, coping skills of patients, patient-centeredness, advocated for patient rights, and discussed alternative modalities. In addition, Network staff recommended the facility reassess the patient, suggested patient letters to address the concerns, and recommended tools to address conflict behaviors. Network staff consistently followed up with facilities that had at-risk patients and continued to intervene as needed. Network involvement prior to discharge suggests that fewer patients are then discharged. Overall, the number of patients who were at risk for discharge and then discharged within the first three months of Network interventions or by the end of the year has consistently been less than 15%. There had been an increase in the number of patients discharged after contact for being at risk in See Figure 70. Figure 70. Result of Network Intervention for Patients At-Risk for Discharge Year Number of Patients at Risk for IVD Percent of Patients IVD within the first 3 months after initial Contact Percent of Patient IVD by Year-End % (5) 11% (6) % (1) 2% (1) % (1) 5% (4) % (10) 11% (9) Total 282 6% (17) 7% (20)

102 Page 97 of 174 F: Barriers to Placement in a Dialysis Facility Calls concerning the inability to find outpatient dialysis placement for patients have been monitored the past six years. See Figure 71 for Network 9 trending and demographics and Figure 72 for Network 10 trending and demographics. Due to anonymous patients, the demographics are somewhat limited. The calls most frequently came from hospital discharge planners. A number of the patients who were involuntarily discharged had difficulty with placement at another facility as did patients with a number of co-morbid conditions with increased medical needs. Figure 71. Barries to Placement Trending and Demographics Network 9 YEAR TOTAL < >74 Male Female Black White Barriers to Placement Percentages YEAR < >74 Male Female Black White % 55% 10% 0% 72% 17% 83% 7% % 38% 13% 0% 63% 29% 42% 38% % 30% 7% 0% 52% 22% 30% 41% % 35% 22% 0% 52% 26% 48% 30% % 46% 7% 9% 59% 24% 57% 26% % 35% 2% 2% 21% 40% 40% 21% Network 13% 41% 23% 13% 55% 45% 33% 65% Anonymous 17 40%

103 Page 98 of 174 Figure 72. Barriers to Placement Trending and Demographics Network 10 YEAR TOTAL < >74 Male Female Black White Barriers to Placement Percentages YEAR < >74 Male Female Black White % 22% 15% 4% 52% 11% 15% 48% % 46% 13% 0% 58% 33% 50% 33% % 15% 8% 8% 46% 8% 38% 15% % 29% 18% 6% 59% 24% 59% 24% % 37% 10% 3% 50% 27% 57% 20% % 41% 11% 0% 44% 19% 44% 19% Network 14% 40% 23% 23% 56% 44% 41% 54% Anonymous 10 37% In Network 9, there were 43 calls regarding barriers to placement with the facility refusal being the primary barrier identified. In Network 10, there were 27 calls regarding barrier to placement issues with facility refusal being the major barrier. See Figure 73. Figure 73. Reasons for Barriers to Placement in 2012 Behaviors Medical Needs Facility Refusal Network 9 (n= 43) Network 10 (n= 27) In looking at the specific reasons in each of these categories, nonadherence is the primary category in Behaviors (see Figure 74 for the complete list), suspected psychiatric issues is the primary category under Medical Needs (see Figure 75 for the complete list) and Multiple Units Denying Admission is the primary category under Facility Refusal (see Figure 76 for the complete list).

104 Page 99 of 174 Figure 74. Behavior Breakdown 2012 Behaviors Network 9 Network 10 Non-adherence Verbal/Written Abuse 4 3 Verbal/Written Threat 4 2 Physical Threat 4 2 Physical Harm 3 1 Property Damage/Theft 1 0 Lack of Payment/Lack of 1 1 Insurance Non-Medicare 1 0 Other 2 2 Figure 75. Medical Needs Breakdown 2012 Medical Needs Network 9 Network 10 Psychiatric Issues Suspected/Probable 6 4 Refused Psychiatric Referral 0 1 Psychiatric Diagnosis on Chart 2 2 Obesity 1 2 Tube Feeding 0 0 Tracheotomy 5 1 Needs Isolation 1 1 On Ventilator 2 1 Needs Stretcher 2 0 Dementia 1 1 Medically Unstable 1 4 Nursing Home Resident 2 1 Co-Morbidities 6 4 Patient Hygiene/Infestation 0 0 Other 10 7

105 Page 100 of 174 Figure 76. Facility Refusal to Accept Breakdown 2012 Facility Refusal Network 9 Network 10 Corporate Denial of Admission 7 6 Not Enough Staff to Handle Patient 0 0 No Accepting Nephrologists 0 1 Multiple Units Denying Admission Unit Full 2 0 Involuntary Discharged 5 4 Former Prisoner 1 0 Homeless 0 1 Substance Abuse 3 0 Does not have an AV Fistula 2 0 No Permanent Access 1 0 Undocumented Immigrant 1 0 Severe Physical Limitations 1 3 Language Barrier 0 0 Other 7 7 The Network worked with hospitals and facilities to identify facilities to accept patients who were hard to place. The Network suggested working with physicians to collaborate with other physicians to accept patients, encouraging facilities to accept patients with placement barriers for short term/transient dialysis or to interview potentially difficult patients prior to making the placement decision and establishing guidelines for the patient s behavior as needed. The Network also explored options with corporate facilities to accept difficult to place patients in one of their other facilities. In addition, the Network recommended Dialysis Facility Compare.

106 Page 101 of 174 G: Support & Mediation The Network used a variety of formats to make information available to the dialysis community to help resolve patient grievances and complaints. Specific activities include the following: Network staff members routinely handled many requests for technical assistance directly from patients and their families, as well as facility staff members. Network staff would coach patients and staff in a number of ways to address their concerns and would brainstorm and encourage patients and staff to think outside the box for solutions. The Network staff worked directly with patients to develop effective communication strategies, participated in conference calls with facility staff, and assisted staff in identifying root causes of behavior as well as ways to provide patient-centered care.. In some instances, the Network acted as a mediator, making an initial contact for an individual who sought assistance. The Network provided assistance to facilities to avoid the discharge of patients, reviewed and provided input for health care team agreements and letters to patients, and worked with patients and facilities to resolve issues before they became grievances. These contacts are tracked by the Network Contact Utility system. The Network sent grievance packets to patients on request. The grievance packet is also available on both of the Network websites. The Patient Concerns/Grievance poster was sent to facilities in March. Social workers were sent mental health resources on depression and a selfscreening tool in May. The Network participated in a Network 15 project that involved the development of a session on adherence for NW 15 s new Renal Tip Line, which is an audio educational phone line that allows patients to access various topics such as coping with kidney disease, adherence, and empowerment. The Network co-sponsored with Indiana University, two patient empowerment workshops in June to encourage patients to become involved in self-management, empowerment skills, explore information on all modalities to choose the one that best fit his/her needs, as well as information on rehabilitation resources. The Network co-sponsored with Indiana University an evening meeting for physicians/staff that provided information on empowerment and the value of patients being empowered. The Network conducted a Train the Trainer Program on the Dialysis Patient Provider Conflict (DPC) Toolbox in February. It also distributed Dialysis Patient Provider tool boxes and posters as needed or when requested by facilities. Information and resources were also available on the Network website.

107 Page 102 of 174 In August three training programs were offered to technicians and nurses on how to decrease conflict with patients and increase professionalism. In September, a training session was held in September at the Kidney Foundation of Ohio s annual meeting on Patient / Staff Conflict. Facility staff had the opportunity to listen to and receive handouts on a recorded webinar presentation on professionalism, entitled the Patient Whisperer and it was recommended when appropriate by Network staff to specific facilities. Facility staff had the opportunity to listen to a recorded webinar on Patient Safety in the Dialysis Unit and it was recommended when appropriate by Network staff to specific facilities. In April, a letter informing facilities of the annual total of complaints received at the Network during the prior year (2011) was mailed to medical directors and administrators. The Network provided resources on working with the young adult renal patient to facility staff to encourage them to address their issues in an age-appropriate manner. The Adherence Toolkit is frequently referenced and referred to in contacts with facilities regarding compliance issues. The patient newsletter, Renal Outreach, contained information regarding the complaint and grievance process and how to contact the Network for assistance. The handout on the Involuntary Discharge Process that includes attending physician responsibilities is available online on the Network website and is referred to and ed to facilities when discussing challenging patient situations that might result in a discharge. The Patient Leadership Committee drafted a handout and slides on professionalism from the patient viewpoint. Information was shared with all facilities in September about an End-of-Life webinar offered by Network 5.

108 Page 103 of 174 GOAL 4: Improve collaboration with providers to ensure achievement of the goals through the most efficient and effective means possible, with recognition of the differences among providers and the associated possibilities/capabilities. Working in collaboration with other organizations enables The Renal Network, Inc., working in ESRD Network 9 and ESRD Network 10, to reach a diverse array of audiences with the common interest of improving quality of care for end-stage renal disease patients. During 2011, the Network collaborated directly with providers of end-stage renal disease services and with health care organizations in related areas. The goal of all of these activities was to benefit the ESRD patient by increasing knowledge and awareness of dialysis and transplantation.

109 Page 104 of 174 A. The ESRD Provider Community The Network acts as a clearinghouse to provide information concerning ESRD technology and treatment advances to ESRD professionals, patients, and other interested persons and organizations. Information received or generated by the Network was disseminated to the appropriate individuals at the discretion of the Executive Director or other appropriate staff persons. During 2012 information was distributed Network-wide in the following manner: 1. Data Dissemination. The Network provides timely data to its dialysis facilities to allow and encourage benchmarking and data analysis at the local level. During 2012, the following data reports were distributed to all dialysis facilities in Network 9 and Network 10: 2011 Annual Statistical Report for ESRD Network 9 and ESRD Network 10. This resource includes: o A description of The Renal Network o CMS national goals and Network activities to achieve them o A report on the Clinical Performance Measures Project o Network special studies o Focused quality assurance activities o Patient concerns, complaints and formal grievances o Support and mediation of patient concerns o Programs for the ESRD provider community o An overview of dialysis services o Incidence and prevalence of end-stage renal disease o Rates of hemodialysis, peritoneal dialysis and transplantation for Illinois, Indiana, Kentucky and Ohio. The report was posted to the Network website, which showed a total of 368 page visits and 619 file downloads. It was also available in hard copy by request. Dialysis Facility Reports. CMS contracts with the University of Michigan Kidney Epidemiology and Cost Center (UM-KECC) and Arbor Research Collaborative for Health to produce these annual reports. The 2012 Dialysis Facility Report (DFR) was available on-line only in July. s were sent to facility Master Account Holders (MAH) beginning in June 2012 about the process for obtaining the

110 Page 105 of 174 reports. The Network maintains a list of the facility designated MAH, usernames and passwords to assist facilities in accessing their reports. Performance Score Reports and Certificates The final Payment Year (PY) 2013 Performance Score Reports and Performance Score Certificates were available online at on December 15, The PSC is a two-page document intended to inform patients and their families how a dialysis facility performed in the ESRD QIP. The certificate was required to be posted in an area easily visible to patients and their families by December 20, The Network notified facility MAHs of the process in early December. Facility staff members were assisted as needed. Network 9 and Network 10 Fourth Quarter Lab Data Collection. In the fourth quarter of 2011 (October, November and December), large dialysis organizations submitted lab data via data download to ESRD Network 11. Network 11 also collected lab data from national labs for independent hemodialysis and peritoneal dialysis facilities that used them. All other independent hemodialysis and peritoneal dialysis facilities were asked to voluntarily submit to the Network lab data via Excel spreadsheets. Feedback reports describing the data collected were prepared by ESRD Network 11 and were distributed to facility medical directors, administrators, and nurse managers on May 4, The reports compared facility-specific outcomes to state and national outcomes. A Clinical Performance Goals document was posted to the Web site in June 2012 displaying state, Network, and national data for facility comparison. Fistula First. Fistula First Facility Specific Reports were sent to all hemodialysis programs in March 2012 to show fourth quarter 2011 data and June 2012 to show first quarter 2012 data. No other reports were provided due to data entry into CROWNWeb.

111 Page 106 of Websites The Renal Network, Inc. ESRD Networks 9/10 maintains three websites: The Renal Network, Inc. (TRN), at Kidney Patient News (KPN), at Midwest Chronic Kidney Disease Coalition (CKD), at Each site provides an Internet presence targeted to meet the needs of the populations which the Network serves. KPN provides valuable resources to patients and their family members, friends and the community at large. TRN is an organizational site and is geared toward dialysis staff, renal professional and other renal community stakeholders. The Midwest Chronic Kidney Disease Coalition (CKD) site was developed as a channel for coalition partners to promote best practices and management of chronic kidney disease. By creating and maintaining individually focused websites, the Network is able to serve patients and renal staff, its two main constituencies, in a more efficient and effective manner. Web Statistics Web statistics offer a snapshot view of: What pages they are viewing (Pages) How many users are visiting the site (Visits) What links they are viewing (Hits) What materials they are using from the site (Downloads) Web statistics are a valuable tool in shaping overall outreach objectives by helping to assess which materials and educational strategies have had the most impact on website users. Web hits offer a general day-to-day metric of activity on each site. While downloads provide information on what was actually used from the sites. In order to provide a more meaningful assessment of website usage, the monthly number of page views and visits will be reported in addition to hits. Downloads are more accurately reported in terms of site activity by the amount of bandwidth transmitted. That measure however is not relevant to our assessment or monitoring activities. Downloads will continue to be reported relevant to specific files.

112 Page 107 of 174 The Renal Network, Inc. (TRN) The primary focus of the TRN Network websites is to provide dialysis staff and renal professionals with the information and tools needed to improve patient quality or care and quality of life. The TRN site an overview of the Network strategic goals and the latest Network policies and procedures including guidelines to facilitate the implementation of critical changes in the CMS ESRD Prospective Payment System (PPS), Conditions for Coverage (CfC), CROWNWeb, and Fistula First. The TRN site provides access to training materials and educational opportunities to assist the execution of CQI activities and special projects. It also provides a reliable point of reference for emergency preparedness, disaster planning and alerts. In addition, the website contains information to assist facilities in handling challenging patient situations, potential discharges, rehabilitation, palliative care and quality of life issues. Data and other tracking resources are provided to assist facilities in measuring and evaluating their own performance. The site also seeks to provide a gateway to existing resources and tools by providing links to reliable online sources. TRN Site Activity Figure 77 shows the 2012 visits, hits and downloads for The Renal Network site ( on a month-by-month basis. In 2012, The Renal Network Web site averaged per month: 22, 275 user visits, 96,857 hits and 16, 554 file downloads per month.

113 Page 108 of 174 TRN Top Page Views See Figure 78 the top 10 pages on The Renal Network Web site for the year Figure 78. TRN 2012 Top Page Views Page Total Adherence Toolkit 3529 TRN 2012 Nephrology Conference Diamond Program page 2968 Fistula First (resource page) 2912 QAPI (main resource page) 2657 Guidelines for Assessment and Referral to Vocational Rehabilitation 2151 Continuous Quality Improvement Plan 1982 Conditions for Coverage (main resource page) 1971 Data Forms (resource and download page) 1945 KDQOL (main resource page) 1929 TRN Posters (download page) 1241

114 Page 109 of 174 TRN Top Downloads. In 2012, there were a total of 178, 908 file downloads. The top ten individual file downloads during 2012 are reported in Figure 79. Figure 79. TRN 2012 Top File Downloads File Total Are Your Kidneys Beginning to Fail? TRN New Patient Manual AV Fistula Maturation, Cannulation, and Protection (presentation) 4490 TRN Transplant booklet 4311 AAMI RD52: Dialysate for hemodialysis 2832 Project: Cath-Out! Dialysis Facility Action Steps (part of Prevent Catheter Toolkit) 2495 Best Ways to Deal With Noncompliant Patients (presentation) 2043 Guidelines for PICC Avoidance in Chronic Kidney Disease Tip Sheet.pdf 1782 The HeRO Vascular Access Device: A New Solution for the AV Access (presentation) 1780 Water: what s New & What to Do 1775 Missing Dialysis: Is It Worth the Risk? (poster) 1225 TRN Toolkits. The Renal Network has over the years has created resource pages on the Web that address a specific issue or concern. The top TRN toolkit Web activity during 2012 is reported in Figure 80. Figure 80. TRN 2012 Toolkit Web Activity Toolkit Page Hits Downloads Adherence Toolkit The 3Ps for Vascular Access Success Vascular Access Improvement Project AVF Assessment & Cannulation Tools * VAIP Place & Use Fistula 290 * VAIP Preserve Fistula 289 * VAIP Prevent Catheter 281 * *Downloads total includes access from all four pages that link to the VAIP toolkit

115 Page 110 of 174 Kidney Patient News (KPN) The Renal Network, in 2001, recognized that providing internet access to quality information on kidney disease for general educational purposes was an important resource for kidney patients. With the guidance of its Patient Leadership Committee (PLC) and the staff of the Patient Services Department, Kidney Patient News was developed with insights from the patient perspective. The KPN site is devoted to issues of interest to patients and family members. It contains articles and resources for CKD, vocational rehabilitation, transplantation, treatment modalities, advance directives, and end-of-life issues. KPN Site Activity. Figure 81 shows the 2012 visits, hits and downloads for Kidney Patient News site ( on a month-by-month basis. In 2012, The Kidney Patient News site averaged per month: 3,070 user visits, 22, 192 hits and 317 file downloads. Since the Kidney Patient News site is organized as patient education portal, a high average of downloads would not be expected. Resources are provided primarily as links which click-through to organizations housing the information.

116 Page 111 of 174 KPN Top Page Views Figure 82 shows the top ten pages on Kidney Patient News Web site for the year Figure 82. KPN 2012 Top Page Views Page Total Prevent Catheter Toolkit Diet (main resource page) 2142 Diet Cookbooks (resource page) 1759 CKD Overview (main resource page) 1525 Vocational Rehabilitation (main resource page) 1423 Peritoneal Dialysis (main resource page) 1075 Treatment (main resource page) 1053 Learning About Kidney Disease in Children (resource page) 992 Family Life (resource page) 757 Learn To Live (Patient Story html version) 739 Diet Recipes (resource page) 704 KPN Top Downloads. A total of 3,218 downloads were generated through the TRN patient website in The top ten downloads during 2012 are illustrated in Figure 83. Figure 83. KPN 2012 Top File Downloads File Total Are Your Kidneys Beginning to Fail? 1192 South West Cookbook 163 Living Well On Dialysis A Cook Book For Patients And Their Families 133 Learn To Live (Patient Story) 67 TRN Access: Your Lifeline Booklet 65 TRN Nutrition Booklet 63 Renal Outreach Vol. 13, No.1 51 TRN New Patient Manual 48 Managing Stress: What Kidney Patients, Family Members, and Caregivers Need to Know 41 NW 11 Patient Emergency brochure 38

117 Page 112 of 174 Beneficiary Focused Learning Network A Change Package created by the Beneficiary Focused Learning Network was made available to all users in December of 2012 and generated a total of 220 page views with 11 downloads. The Midwest Chronic Kidney Disease Coalition (CKD) The Midwest Chronic Kidney Disease Coalition (CKD) site was created as a Web presence that would act simultaneously as a point of distribution for committee materials and resources and as a means to promote committee identity and stimulate committee membership and development. CKD Hits and Downloads Figure 84 shows the 2012 Web page views (total 3994), visits (total 3151) and hits (total 7019) for Midwest Chronic Kidney Disease site on a month-by-month basis. A total of 839 downloads were generated through the CKD coalition website in The article "Clinical Epidemiology of Cardiovascular Disease in Chronic Kidney Disease" by Kundal and Lok published in Nephrology Clinical Practices accounts for 401 downloads.