2020 marked the start of 5 new paediatric research projects funded by the National Children’s Research Centre and Children’s Health Foundation, Crumlin. Ms Susan Ward (TCD, Clinical Research Fellow), Dr Sarah Dockrell (TCD, academic supervisor), and Dr Emma Jane MacDermott (CHI at Crumlin, clinical supervisor) were awarded funding for the project “Development of a physiotherapy decision-making tool for paediatric joint hypermobility: A move towards targeted treatment”.
Joint Hypermobility (JH) is a term used to define the capability that a joint has, to move beyond normal limits. Other terms used to describe this are loose joints or double jointed. For most, JH causes them no problems, and can be an advantage in some sports and activities. For others, JH is accompanied with varying levels of joint pain, tiredness, multisystem complaints, and functional difficulties. Joint hypermobility related disorders account for approximately 40% of the referrals to Children’s Health Ireland (CHI) at Crumlin Paediatric Rheumatology clinics. Children with these complaints are often diagnosed with Hypermobility Spectrum Disorder (HSD) or hypermobile Ehlers Danlos Syndrome (hEDS).
Currently, there is no agreement as to how to manage children and teenagers with HSD and hEDS. There is emerging evidence of the existence of subtypes which may respond differently to treatment, warranting different treatment approaches. Although evidence is lacking, physiotherapy and occupational therapy play a central role in the assessment and treatment of children and teenagers with HSD and hEDS.
This study aims to (i) identify clinical subgroups in children and teenagers with a new diagnosis of HSD or hEDS, and (ii) develop a decision-making tool for physiotherapists based on the findings of the study. The participants will be recruited from the paediatric rheumatology clinics in CHI at Crumlin. The clinical characteristics of the children and teenagers will be explored using medical chart reviews, structured and semi-structured interviews, parent and child questionnaires, and clinical measurements.