From the patient’s perspective; Haemophilia
There are an estimated 400,000 people worldwide living with haemophilia, with approximately 6,000 sufferers in the UK alone. Haemophilia is an inherited disorder that affects the body’s ability to clot. Usually, when someone cuts themselves, clotting factors and platelets combine to make the blood stickier and stop the bleeding. However, in haemophiliacs, the bleeding episodes last longer due to abnormal clotting, and bruising and spontaneous bleeding can also occur too. The main problem for haemophiliacs is internal bleeding into joints, muscles and soft tissues, which can cause pain and stiffness and ultimately lead to joint damage. To better our understanding of the patient’s perspective when it comes to market research studies, we spoke to someone who recently took part in haemophilia research with GKA.
Due to the way the condition is inherited, most sufferers tend to be male – however despite it being an inherited disorder, about a third of new diagnoses have no previous family history. There are two types of haemophilia, with Haemophilia A making up 90% of those affected. It is thought that one boy in every 5,000 suffers from Haemophilia A, whilst one in every 30,000 has Haemophilia B. In Haemophilia A, sufferers are lacking in clotting factor VII, whereas in Haemophilia B they lack clotting factor IX. Although there was a bleak outlook for sufferers in the past, today’s treatment means that haemophiliacs can have a good quality of life thanks to factor replacement therapy which injects the missing clotting factor into the bloodstream.
At GKA, we have conducted over 60 studies in haemophilia over the years and have recruited respondents including haematologists, surgeons, haematology nurses, payers and patients for multiple methodologies. We currently have 270+ haematologists and 140+ haematology nurses on our panel, as well as more than 25 patients. As part of our blog series to improve our understanding of the patient’s perspective, we speak to a patient who recently took part in medical market research with GKA. The project involved a short telephone interview, and aimed to better understand people’s experience of living with haemophilia and how they manage and treat the condition:
How would you describe haemophilia in your own words?
I’d describe it as a bleeding disorder that needs to be taken care of very well. It’s something that can escalate if you’re not careful, but at the same time, it’s something that can be kept relatively under control if you do what needs to be done.
When were you first diagnosed with haemophilia and what did the doctors tell you about it?
I was born with haemophilia so I don’t know how it was explained to my parents, but I do know that I was brought up very carefully and I was always very conscious that I shouldn’t fall down or slip over and that I should be careful not to fall off my bike because any falls or external or internal injuries could become fatal. I grew up with a list of do’s and don’ts and had to be careful my entire life that I didn’t cross any of those lines.
How long did it take to get a diagnosis?
Because I was born with haemophilia I was pretty quick to get diagnosed, but the first sign something was wrong was when I was circumcised and I didn’t stop bleeding – that’s when they first found out something was wrong. However, generally speaking, I think a good doctor can identify haemophilia pretty much straight away and a couple of blood tests is enough to get a proper diagnosis.
What’s it like living with haemophilia?
When I started understanding the condition properly as I got older I soon realised that the best way to deal with it is to have a positive attitude. People often take a negative approach when they are diagnosed with haemophilia, take a step back and become extra cautious. They become too scared to do anything, but for me, that’s when haemophilia wins because your body and joints start getting weaker, and you start having bleeds; everything has a knock on effect. The fitter, healthier and more positive you are, the stronger you will be – and the better you will be able to cope. The way I look at it is that you have to stay positive!
Everyone has issues in their lives and things they can and can’t do – for example, diabetics have to be careful with what they eat – and as long as you manage things well, you should be ok. Saying that, it is challenging living with the condition. You have to be very strong and have a lot of willpower and there are quite a few things you have to give up. For example, I had to give up cricket. I was very passionate about it and it was very close to my heart, but I had to give up because I couldn’t go on to compete at a national or international level because of my condition. But you have to stay positive: everyone has things they want to do but can’t, that’s just life and you can’t let those feelings drag you down as life will become even more difficult if you do.
How does haemophilia affect your daily routine?
As I said, there’s a list of things you can’t do and somehow you have to make your life work around it. For example, long distance commutes are really difficult for me because things, like changing trains and climbing up and down stairs in tube stations, are hard because of my bad knee joint. There are also things with my children that I can’t do, such as helping them learn to ride a bike which I’m not able to do as I can’t run along behind them.
How do others react when you tell them you’ve got haemophilia?
Most people don’t understand what it is and they certainly don’t understand the seriousness of it – but I actually think that is a good thing. If they don’t understand it or take it too seriously it means they won’t be too negative, and the only person that really needs to understand it is me.
Do you feel you receive enough information and support from HCPs?
On the whole, yes. I sometimes feel as if doctors can try and push their preferred products on me, or want me to do trials for reasons that are unknown to me, but generally speaking, the information and support has been good and I feel as if I have been in good hands.
Have you used any websites or support groups?
No, I just rely on my consultant and my nurse who is my first point of contact. I never ever Google things as I think Google is dangerous, so any questions about my condition I just take straight to my nurse. I also haven’t used support groups; it’s just not for me. If I ever meet other haemophiliacs, they tend to be quite negative and want to start with negative conversations, but I think that it’s so important to stay positive so I don’t want any negativity. Conditioning your brain to be strong is the driving force of living with this condition, and I only want to focus on the positive, not negatives.
How did you find out about taking part in market research with GKA?
I first heard about market research from my consultant and nurse who recommended I take part. My most recent experience was taking part in a telephone interview, and I have also taken part in product-related research in central London too.
What do you feel you got out of the process?
For me, I really like the concept of market research because it’s all about moving towards making living with haemophilia better. I think it’s a very positive movement, and anything that will help improve the lives of haemophiliacs for me is a really important thing.
Would you consider taking part in future projects?
Absolutely – if it helps people suffering from haemophilia and means we can make steps in the right direction, I will always be keen to take part.
If you’re planning a medical market research study, why not sign up to our therapy area guides series? We cover a wide range of therapy areas, including haemophilia, Each guide includes incidence stats, diagnosis and treatment overviews and information on who we can access for your medical fieldwork.