Pediatric Haemophilia Activities List Children s/teenagers version An activities questionnaire for children and teenagers aged 8-17 with haemophilia. Date completed :... Date of birth:... Version 0.11-2009 Wim Groen Van Creveldkliniek & Dpt. of Pediatric Physical therapy and Pediatric Exercise Physiology University Medical Centre Utrecht
Introduction This is the Paediatric Haemophilia Activities List, or PedHAL for short. This list describes a number of activities that can cause problems for children and teenagers with haemophilia. We would like to use this list to find out whether they are problems for you, too. General comments Answer the questions only according to your experiences. You should give the answer that you think best describes your situation. For each of the activities, you are asked to indicate whether you have had problems with that activity in the past month as a result of haemophilia. There are seven possible answers from which to choose. Provide your answer by placing a cross in the appropriate box. Example: Cycling 0 1 2 3 4 5 Cross one box per question. Use the N/A option if you never (or never need to) carry out the activity. The difference between Impossible and Always is that Impossible means you are unable to carry out the activity, whereas with Always you can. Answering Always means that you always have problems with the activity, but are still able to carry it out. It is very important that you answer all the questions. Even if you think the question is not important or if you do not have an opinion on it, we would still like you to select the answer that best describes your situation. If you have doubts about answering a question, try to give the answer that comes closest to what you think. This questionnaire takes about 10 minutes to complete. - 2 -
sitting/kneeling/standing Sitting down (e.g. on a chair or couch) Sitting on the ground (e.g. when watching television or playing) Standing up from a chair with arm rests Standing up from a chair without arm rests Kneeling/squatting (bending your knees) Squatting for long periods (knees not touching the ground) Bending over forwards Standing still for a short period (less than 10 minutes; e.g. waiting in a queue in a shop) Standing still for longer periods (from 10 minutes to 1 hour) Standing still for very long periods (more than 1 hour) - 3 -
Functions of the legs Walking short distances (less than 10 minutes) Walking longer distances (from 10 minutes to 1 hour) Walking long distances (more than 1 hour) Walking on an uneven surface (e.g. a bumpy road, high curbs, doorsteps) Walking on a soft surface (e.g. on the beach) Strolling (e.g. a day at the zoo) Running (e.g. to catch the bus, or catch up to a friend) Jumping (onto/off something) Walking up stairs (a whole stairway is around 14 steps) Walking down stairs Walking or riding up a small hill or slope without help - 4 -
Fuctions of the arms Carrying large or heavy objects with two hands (e.g. a big box of toys, a pile of books) Stretching to reach something above your head (such as a high shelf) Fine hand movements (e.g. picking up Lego, playing computer games) Writing (such as schoolwork or homework) Leaning on your arms Shaking hands with someone Use of transportation Cycling Getting in and out of the car Using public transport (bus, train, metro, tram) - 5 -
Self care Drying your entire body Putting on a t-shirt, jumper or sweater, etc. Putting on trousers Putting on shoes and socks Wiping your bottom after using the toilet Fastening a hood or doing up the top button on your jacket Buttering bread or making a sandwich Unscrewing the lid from a bottle of water, juice, etc. Brushing your teeth - 6 -
Household tasks Chores in the house (e.g. making your bed, cleaning your room, setting the table) Outside chores (e.g. putting the rubbish out, washing the car) Other household chores (running errands, walking the dog) - 7 -
Leisure activities and sports Going out and dancing (theatre, museum, cinema, pub, disco) Playing outside, alone or with others School sports: exercises and gymnastic equipment School sports: athletics (e.g. long jump) School sports: ball sports (volleyball, softball) Playing non-contact team sports (e.g. volleyball, basketball) Playing contact team sports (e.g. water polo, soccer) Individual non-contact sports (e.g. tennis, cycling) Individual contact sports (judo, karate, boxing, kickboxing) Taking part in a sports event over the course of several days (e.g. swimming, walking, cycling or a sports tournament) Going to school camp or summer camp - 8 -
Adaptations and using an aid You may be making use of various types of modified equipment or aids to enable you to carry out various activities these are aids that you use if you don t have an acute condition (so excluding the use of crutches if you have a joint bleed). The questions below concern such modified equipment and/or aids. Do you have a bike that has been modified? No, I don t have a bike No, my bike has not been modified Yes, I have a bike with (several answers allowed): Three wheels Power Assist system A moped or motorised bicycle Do you use any aids when carrying out certain activities? No, I don t use any aids Yes, I use (several answers allowed): A crutch (1 crutch/walking stick) Crutches (two) Wheelchair Walker/walking frame If there are any other activities that you would like to add to the list, please describe them below: Thank you for your cooperation. - 9 -