5 minutes with… Roseanna Brady
Health psychologist Dr Roseanna Brady has led a project exploring the experiences of people with the potentially fatal iron-overload condition genetic haemochromatosis – which is not well understood outside of medical circles. Brady, who has the condition herself and is a Trustee of Haemochromatosis UK (HUK), spoke to us about how the skills and knowledge of health psychologists can be used in helping people with such conditions.
What led to your involvement with Haemochromatosis UK?
It was a coincidence of three events. I was looking for a part-time pro bono role where I could positively influence the health experience of people with a long-term health condition. At that time, I saw an advert for a trustee position at Haemochromatosis UK and I had recently been diagnosed with the condition myself. That sent me a strong message to get involved so I applied and was accepted.
Can you tell me how the research and subsequent report came about?
When I joined HUK, they were considering how to approach reporting on a large survey they had conducted the previous year. They had gathered 2000 responses to a survey about patient experiences of symptoms, diagnosis and treatment of genetic haemochromatosis (GH), a metabolic disorder that causes excess absorption of iron from the diet. It’s easy to treat but poorly recognised, and late diagnosis can lead to debilitating symptoms and illnesses, including liver cancer.
Most of the research to date is medical, and less is known about the impact of the condition on people who live with it. I explained to the board how professional researchers in health psychology would have particular expertise in survey analysis, and we put the work out to tender. A health psychology team from the University of Surrey won the bid. My role from then on was to liaise with the team at Surrey and to lead the HUK editorial board.
What were the key findings?
The findings confirmed what was already believed – that joint pain and fatigue are the most common symptoms experienced by people with GH. For 63 per cent of respondents, fatigue and joint pain or arthritis are persistent and often painful problems. Other common symptoms include psychological and cognitive problems, and we need more research to understand whether this is a result of excess iron or as a result of the debilitating symptoms. It’s very likely that for every person diagnosed, there are between eight and 10 people who are not. Because the symptoms are shared with many other conditions, it makes GH difficult to detect without tests. If we could identify particular symptoms or clusters of symptoms, that would prompt investigation for GH, which might contribute to earlier detection of the condition.
Treatment for GH usually involves drawing blood at regular intervals to reduce the amount of iron stored in soft tissues and joints, and for some, but not all, this is an effective treatment. However, it cannot reverse organ or joint damage already experienced, so early diagnosis is vital. Not all respondents reported the same experience of testing and treatment, which supports the case for implementation of guidelines, which HUK will call for very strongly. Finally, respondents indicated a lack of confidence in GP knowledge of GH.
Why is health psychology important in areas such as this, and where is your work with HUK heading?
As a health psychologist, I can make an important contribution to the research agenda through designing member surveys, defining research questions for qualitative research and longitudinal studies, and encouraging health psychology researchers to focus on GH in patient research.
I’m also interested in how people attribute symptoms to their diagnoses. Misattribution could lead to masking other health conditions that require a different treatment, or it might cause unnecessary distress if people become hypervigilant and anxious about developing serious disease. I will be looking at how HUK communications with patients may help in these areas.
I’ve started working with the HUK helpline team to help them to understand the psychological impact of GH, and treatments for it. For February 2019 I’m planning a creative workshop with GH patients in Newcastle, where we’ll focus on effective communication with GPs. I’m also working with a multidisciplinary team on developing best practice guidelines for venesection (removal of blood to reduce iron levels in the body), where I hope to improve the patient experience of treatment, which can be demanding, especially in the early stages when venesection is performed weekly or fortnightly. There will be many more opportunities in my three-year term to make a positive contribution from a health psychology perspective.
The report Living with the Impact of Iron Overload will be launched on 31 October at the House of Commons.
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