The Psychological Impact of Joint Hypermobility
Research type
Research Study
Full title
Understanding and Managing the Psychological Impact of Joint Hypermobility Syndrome
IRAS ID
174518
Contact name
Sarah Bennett
Contact email
Sponsor organisation
The University of the West of England
Duration of Study in the UK
2 years, 0 months, 7 days
Research summary
Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome Hypermobility type (EDS-HT) are conditions where some or all of the joints within the body move beyond a typical range of movement. This hypermobility is sometimes referred to as being ‘double-jointed’. Hypermobility can cause joint instability and chronic pain.
We know that physical things such as long-term chronic pain can have an impact on how people feel. The purpose of this study is to explore people’s experiences of living with JHS/EDS-HT and how they cope with their condition. The primary stage of the research will involve using telephone interviews, speaking with patients who have JHS or EDS-HT about their condition, diagnosis and experiences of healthcare.
Postural Orthostatic Tachycardia Syndrome (POTS) is a very common finding in people with JHS/EDS-HT. It causes a very fast heart rate on standing and symptoms similar to anxiety disorders or panic attacks. Research has shown that people with JHS/EDS-HT and POTS are more likely to have higher scores on anxiety assessments. We are interested in whether this pattern is actually due to the symptoms of POTS by comparing our results from questionnaires to people who do not have JHS/EDS-HT. Therefore, the second stage of our research will involve testing people with JHS or EDS-HT with questionnaires, and comparing their results to a control group of people without JHS/EDS-HT who have taken the same questionnaires. At the end of the study we will have a greater insight into the cognitive and behavioural impact on people with JHS/EDS-HT.REC name
London - West London & GTAC Research Ethics Committee
REC reference
16/LO/0511
Date of REC Opinion
18 Apr 2016
REC opinion
Further Information Favourable Opinion