Roche Chugai recently released a very interesting report about the importance of young people with haemophilia taking ownership of their own treatment and the role that their clinicians, family and community can play in helping with that transition. The report, with input from Dr Daniel Hart, Consultant Haematologist,The Royal London Hospital Haemophilia Centre Trustee and Lead Clinician at Little Bleeders Patient Group and Wil Woan, Director of Little Bleeders, used a series of first-hand interviews from people involved in the treatment of haemophilia including clinicians, patients, parents, carers and representatives of the Haemophilia Society.
Thanks to medical advancements and research over the past 30 years there are newer and more manageable treatments available to help keep haemophilia under control. For this report, focus was placed on preventative ‘prophylactic’ therapies and ‘on-demand’ medications as well as clinical, psychological, physiological and holistic support.
While therapies are advancing, there are still challenges being faced in terms of attitudes and knowledge of haemophilia amongst the public and health care providers and there are still inconsistencies being seen across the country in the overall care and resources available to patients.
Here are some of the key takeaways from the report:
Young patients should have access to standardised multi-level care and advise:
The best way to get young people on board with managing their own care is to ensure that they have access to all of the resources they need in their community. While most people have access to haemophilia centres (HCs) for their every day needs, it is also beneficial to be able to access a Comprehensive Care Centre (CCCs) where they will be able to benefit from the resources to assist with their more complex treatment issues, as well as routine care, particularly during the time of initial diagnosis and later transition to ownership of care. The ultimate solution would be that more HCs have access to the same resources, however this is unfortunately not the case in many areas in the UK.
Haemophilia can have an affect on not only the clinical but also the practical, physical and emotional aspects of a patient’s life, In addition, young patients should be be provided access to a multi-disciplinary team including physiotherapists, laboratory experts and psychologists who can assist young people with the various issues faced when learning to cope with haemophilia as a young adult.
“We need standardised care at all HCs to limit the need to travel to other centres for better services,” says Josh, aged 19, who is studying geography at the University of York. He was diagnosed with haemophilia at 6 months old. “All centres should give people equal access to care services and information in various ways to help them connect to patient support groups. I only discovered the Haemophilia Society by accident. It wasn’t advertised in my local HC.”
Young people with haemophilia need to be empowered for their future:
As mentioned, many patients only have access to small HCs within their community and while these HCs should be better equipped to provide resources to young people with haemophilia, it is unfair to expect that it is easy for these clinics to fully provide the ideal level of advanced care without the support required.
As such, young people need to be empowered in other ways such as encouraging them to have the confidence to ask questions at their HCs and CCCs and to also encourage them to gain the education through active engagement in support groups and associations that can provide the knowledge they need to speak up and get what they need from their local centres and communities. Essentially, young people need to become experts in their own condition and become their own advocates.
According to Dr Daniel Hart, “At Little Bleeders, our main aspiration is that kids with haemophilia should be leading as normal a life as possible. They might not be playing rugby for England or boxing for Wales but ideally, they’re not bleeding, so they’re not missing school or physical education and are participating in education to the point where they can get what they want out of life and work. We want to continue to communicate this aspiration to kids as they’re growing up – through their school life, teenage and young adult years.”
A study co-authored by Dr Hart revealed that support from HCs, CCCs, families and communities play a positive role in encouraging teens with haemophilia to adopt their own treatment practices and adherence to them over time.
Haemophilia care for young people should involve a multidisciplinary team of experts
In addition to HCs and CCCs young people will have more confidence and be better equipped to manage their haemophilia when they have access to expertise in areas such as physiotherapy, emotional counselling and educational resources such as haemophilia education and sexual education.
Early education needs to start at first diagnosis provided by clinical experts and haemophilia societies and charities such as Little Bleeders so patients and their families can be better equipped to take on their self-care later in life. The knowledge prepares both the child and family for what they will be dealing with as they continue to grow and mature.
Physiotherapy also plays a key role in helping to manage the condition and empowering children to take on their own care in their teens. Regular physiotherapy helps to build and maintain a strong, healthy body which helps in the control of bleeds and damage to joints. A physiotherapist who specialises in haemophilia can help provide techniques and exercises that can help control the number of bleeds, allow for better healing times, improve quality of life and protect the joints over time.
In addition to physical health, mental health needs to be taken care of in young people with haemophilia. Haemophilia and the issues that accompany such a diagnosis can cause mental distress in young people, such as fear of not fitting in, not getting to do the same things as their peers and the emotional impact of the pain and discomfort their condition can cause. Counselling services and education can help provide some relief to the mental stress that patients experience. As well as emotional counselling, sexual health and relationship counselling can help teenagers feel more at ease when dealing with their advancing maturity and how their haemophilia fits in.
“You need a safe place to talk to someone about your emotional, sexual and physical health – not a medical judge and jury,” says Jay, who lives in Edinburgh. “I finally got a chance to openly discuss my sexual health and haemophilia after being referred to a psychologist in Scotland, which was really helpful.”
Managing haemophilia involves a team of experts and community resources. Improved education and access to multidisciplinary care is essential in helping young people adapt to managing their own care and better outcomes in their overall condition.
Unfortunately young haemophiliacs in the UK still face a number of challenges including clinical, psychological, social and lifestyle impacts but with better awareness and education, patients and their families can eventually work through these challenges. There is hope for the future of haemophilia, not only in the way the condition itself is treated but in the way young people cope as well.
The full report: Haemophilia 180 Report FINAL LB