An investigation of beliefs in people with hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD)
Eloise Crowson and Dr Bridget Dibb, School of Psychology, University of Surrey.
The findings from this study are summarised below:
- Participants experienced severe levels of fatigue, moderate levels of pain and mildly elevated levels of anxiety and depression related symptoms.
Quality of life:
- Participants quality of life was impacted by both physical and emotional components.
- Physical ability to do everyday tasks was the most impaired followed by energy/fatigue, general health, bodily pain, physical functioning, emotional problems, social functioning and the least impaired was mental health.
Beliefs about their hEDS/HSD:
- Participants had reasonably negative views of their hEDS/HSD as they believed it was chronic and had reasonably strong consequences on their lives.
- Moderate emotional response and a cyclical timeline.
- They also had moderate beliefs about their personal understanding of the condition and how controllable it was.
Beliefs about the causes of hEDS/HSD:
- The majority of participants believed that the cause of their hEDS/HSD was hereditary.
- Poor medical care in the past (including delayed diagnosis) was also a commonly believed cause.
Association between quality of life and illness beliefs
- An association was found between illness beliefs and quality of life.
- The more physical components of quality of life (physical ability to do everyday tasks, general health, energy/fatigue, bodily pain and physical functioning) were associated with beliefs about consequences of the condition.
- The more emotional components of quality of life (emotional problems and mental health) were associated with emotional problems.
- The only exception to this was social functioning, which is a more emotional component of quality of life, and it was associated with consequences and emotional problems (but the association with consequences was to a slightly stronger extent).
- Pain was a predictor of general health and bodily pain.
- Fatigue was a predictor of physical ability to do everyday tasks and energy/fatigue.
- Depression and anxiety related symptoms were a predictor of emotional problems, social functioning and mental health.
Start date: 25/01/2021
Finish date: 19/02/2021
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