UK guidelines recommend regular assessment of joint status in children with haemophilia using a standardised tool performed by haemophilia physiotherapists. We surveyed UK physiotherapists working in haemophilia care regarding their current practice with respect to joint scoring.
A survey was posted on SurveyMonkey and all haemophilia physiotherapists practising in the UK were invited to respond. Responses were analysed and discussed at a roundtable meeting attended by invited physiotherapists and specialist haemophilia nurses.
In all, responses were received from 29 of the estimated 37 physiotherapists in the UK who see haemophilia patients. Both the survey and subsequent discussion reflected agreement that joint scoring offers a valuable tool to clinicians, but that better ways of assessing joint health were needed. There was enthusiasm for combining joint scoring with systematic and validated patient-reported outcome measures.
Greater understanding is needed of the relationship between joint scores and measures of physical function and quality of life.
The multidisciplinary team approach to providing comprehensive care is the cornerstone of the management of musculoskeletal issues in haemophilia. At the Royal Free the team takes a holistic approach to musculoskeletal disease management that is not just about assessment of a painful knee or having an operation. It recognises that patients sit on a spectrum of musculoskeletal disease severity that is dependent on age and the type of treatments available and the issues that may have been experienced with those treatments. The patient’s own goals sit at the heart of the team’s approach.
From its humble beginnings in 1990, the UK’s Haemophilia Chartered Physiotherapists Association (HCPA) has led the development of haemophilia physiotherapy in the UK and increasingly across Europe too. Over the past 10 years, the growth of the group has centred on an annual professional meeting that facilitated educational opportunities and professional networking, and has increasingly promoted research among members. The HCPA has now established a Clinical Studies Group, an open forum designed to identify and support research needs and to promote a collaborative approach to research that will answer some of the important questions that remain about haemophilia care.
Members of the multi-disciplinary team involved in delivering haemophilia care face a range of significant clinical and service leadership challenges. These include the developing treatment landscape, the drive towards individualised care, an uneven age structure among haemophilia nurses and constrained budgets. Faced with such challenges, the ASPIRE programme has been established to encourage and support a new generation of haemophilia leaders who are committed to improving haemophilia care across the UK, and beyond. The programme is open to healthcare professional from multiple disciplines, and is designed to support the development of a leadership community comprising members of the haemophilia care team in a way that contrasts with hierarchical leadership and management courses more typically found in the NHS.