Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people affected by Joint Hypermobility Syndrome (JHS). The project is being funded by the Health Technology Assessment programme, part of the National Institute for Health Research.
People with JHS are commonly known as 'double-jointed' and can often bend their joints into extreme positions that are sometimes considered as amusing party tricks. However for many people the condition is far from trivial and can be associated with severe pain and problems with controlling joint movement. This can have a major negative impact on their ability to do day-to-day activities and on the quality of their lives.
Up to 1 in 20 women (5%) may have some degree of hypermobility which causes problems, and for men this figure is about 1 in every 167 (0.6%). Physiotherapy, particularly the use of exercise to improve posture, stability and control of movement, is the mainstay of treatment for JHS yet there is currently a lack of good quality evidence for its effectiveness.
Professor Shea Palmer, who is leading the research said, "We know that JHS causes significant problems for people, yet it is generally not well recognised by health professionals.
"We have been working closely with patients and health professionals for just over a year to develop a comprehensive physiotherapy treatment package which includes detailed advice, education and exercise.
"The package has been very well received by a pilot group of patients and physiotherapists and we are now testing it out as part of a larger study with 60 patients.
"The new treatment involves six half-hour sessions delivered over a four-month period. It provides advice about posture, specific exercises for the joints affected, and more general physical activity that fits in with peoples' lives. It also covers advice about things such as setting goals, pacing of activity, dealing with setbacks and being active in the long-term.
"This new approach will be compared with a one-off advice session and booklets produced by a major research charity and a patient organisation to see which is more effective."
The research team is using its recently developed Bristol Impact of Hypermobility questionnaire to identify the problems that people with JHS have, and to measure the effects of treatment on those problems.
The research is being conducted at North Bristol NHS Trust and the Royal National Hospital for Rheumatic Diseases in Bath and people with JHS may be able to take part if they are referred to those services for physiotherapy.
The researchers had previously published a systematic review of the effects of exercise for joint hypermobility which highlighted the need for better research in this area.
More information: Shea Palmer, Samuel Bailey, Louise Barker, Lauren Barney, Ami Elliott, "The effectiveness of therapeutic exercise for joint hypermobility syndrome: a systematic review," Physiotherapy, Available online 5 October 2013, ISSN 0031-9406, dx.doi.org/10.1016/j.physio.2013.09.002.