Omar, aged 13, has Haemophilia A and attends the Great Ormond Street Hospital (GOSH) Haemophilia Comprehensive Care Centre. Here Omar tells us a bit more about his condition and the research he has taken part in at GOSH, which was led by Dr Kate Khair, Nurse Consultant and Melanie Bladen, Specialist Physiotherapist.
Omar has been coming to GOSH since he was four years old because he has Haemophilia A, an inherited bleeding disorder caused by deficiency of a certain protein. If Omar injures himself and has a bleed, his mum will call the Haemophilia centre to arrange for him to come in for a check-up and possible treatment. Omar says: "The nurses and physiotherapists will see what’s wrong and what they can do to manage my injury. I may have to take days off school to stay at home and rest. I tend to get leg injuries and they can take a while to get better. My condition stops me from travelling too far and playing rugby and football with my friends. PE lessons are also difficult because I can’t run or jump on the trampoline."
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The research study
"A few months ago when I came in for a clinic appointment I was asked to take part in a study which involved answering a few short questions on an iPad about how my condition affects my home life and how I talk to people about Haemophilia. The questions had yes, no or maybe answers and it didn’t take long. "
Omar was asked these questions to assess his quality of life and whether his self-reported quality of life matched with assessments made by the physiotherapy team.
The study team also wanted to find out if the questionnaires could be as effectively answered on the computer as they were on paper. Omar explains: "At a normal appointment a few months later, I was asked to answer the same questions using a pen and paper. I decided that I preferred to use the iPad to answer the questions."
The research experience
"This research was trying to find out more about how my condition affects my daily life and I think the aim was to find out how to help other boys."
"I don’t mind being asked to take part in research because I’m not shy answering questions and if they ask my permission and it’s for the hospital I am fine with that. I would say to other boys taking part to be completely honest when you answer the questions as only you and the hospital will know your answers. I would like to know more about what they found out from the questionnaires."
The study Omar took part in has now finished and the data is being analysed. There are plans to feedback to the participants and their families the results of the study in the near future and the results will be used to inform future data collection methods through questionnaires.