World first longitudinal study to help children with joint hypermobility

18 August 2016

Verity Pacey 2016Children and adolescents with joint hypermobility will benefit from the 2016 Menzies Foundation Allied Health Grant of $25,000, which has been awarded to 2012 Menzies Research Scholar in the Allied Health Sciences, Dr Verity Pacey.

The project called ‘Clinical characteristics of children with generalised joint hypermobility: a 5 year longitudinal cohort study’, aims to identify the signs and symptoms of children and adolescents most likely to worsen in terms of pain, fatigue and quality of life over a 5-year period.

This is the first and only prospective longitudinal cohort study of children and adolescents with symptomatic joint hypermobility to be undertaken in the world. Generalised join hypermobility is present in about 10 per cent of the population, with 30 per cent becoming symptomatic. It is more prevalent in females than males.

Verity, a physiotherapy PhD from the University of Sydney and Lecturer at Macquarie University, says the findings of her study will enable treating clinicians to identify individuals at risk of rapid decline at an initial assessment, and prioritise therapy accordingly.

Verity was involved in another first last year when she was one of only six international physiotherapists appointed to the Ehlers Danlos International Physiotherapy Working Group in 2015, to collate and provide international physiotherapy management guidelines for children and adults with symptomatic joint hypermobility.

The study is being done at The Children’s Hospital at Westmead (CHW), where Verity works as a Senior Physiotherapist and has also involved financial support from Arthritis Australia for the first phases of the research.

“Children and adolescents who have Joint Hypermobility Syndrome and Ehlers Danlos Syndrome often experience debilitating symptoms including pain, extreme fatigue, anxiety and depression which all have a significant impact on quality of life.

“Through this study we hope to be able to provide clinical guidance on who will benefit most from targeted management at certain key times in a child or adolescent’s life, to reduce the severity of their symptoms,” Verity said.

In such a large study over five years, Verity says the research is a real team effort requiring lots of hours and collaboration between the investigators. She particularly acknowledged the work of Dr Louise Tofts, Paediatric Rehabilitation Physician at CHW, and Associate Professor Leslie Nicholson and Dr Roger Adams, from the University of Sydney.

Of the 110 patients who presented to CHW with joint hypermobility in the first year of the study, 80 completed the 3-year follow up and the final 5-year follow up, with the assistance of the Menzies grant, will be conducted in January.

“I’m really thrilled the Menzies Foundation has been able to support this important area of research which builds on the work I did as part of my PhD with a Menzies Research Scholarship in the Allied Health Sciences.”

The Menzies Allied Health Sciences Grant of $25,000 is awarded to scholarship recipients who have completed their PhD in the past five years.

Tags: Menzies Scholar Allied Health