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:

Symptoms:

  • 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

Should you have any queries about this study please use the details below:

Eloise Crowson

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