Subjective health complaints and illness perception amongst adults with Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome-HypermobilityType – a cross-sectional study

Abstract

Objective: To investigate the prevalence and severity of subjective health complaints and describe illness perception in a population of Joint Hypermobility Syndrome or Ehlers–Danlos Syndrome-Hypermobile Type.

Method: This study was a postal survey with a questionnaire battery on demographic data, subjective health complaints inventory, and illness perception. A total of 110 individuals diagnosed with Joint Hypermobility Syndrome or Ehlers–Danlos Syndrome-Hypermobile Type from two specialized hospitals in Norway were offered participation. Further, 140 gender- and age-matched healthy controls from statistics Norway representing the general population were sent the questionnaire for reference.

Results: Overall response rate was 30.4% (n = 76), with 44.5% (n = 49) in Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome-Hypermobile Type and 19.3% (n = 27) in controls. Subjective health complaints were significantly higher in Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome-Hypermobile Type - than in the controls (32.06 vs. 11.08; p < 0.001). Further the brief illness perception questionnaire indicated that the adults with Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome-Hypermobile Type had low understanding of their illness and symptoms (understanding, mean: 3.93, SD 2.88), and reported to have moderate personal and treatment control over their illness.

Conclusion: Adults with Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome-Hypermobile Type reported higher frequency and severity of subjective health complaints than the matched controls from the general adult population in Norway. Furthermore, Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome-Hypermobile Type reported low understanding of their illness and associated symptoms, and moderate belief that their illness can be kept under control through self-management or treatment. This may indicate one of the reasons why prognosis for these patients is poor.

Implications for rehabilitation

• Awareness of the complexity of the subjective health complaints and inquiry into illness perception could contribute with valuable information about these patients’ perceptions of their condition. Such information could in its turn be of value for clinicians as they work towards facilitating a more holistic treatment approach, for example patient education and cognitive behavioural therapy.

Keywords:

• Joint instability
• surveys and questionnaires
• illness perceptions
• diagnostic self evaluation
• subjective health complaints

Acknowledgements

We thank all the participants in the study, the Department of Physical Medicine and Rehabilitation, Haukeland University Hospital and Sunnaas Rehabilitation Hospital, TRS, Lena Lande Wekre, dr.med.sc, National Resource Center, for their help in this study. We also thank Msc Elise C. Johannesen and Msc Helle S. Reiten for helping with data sampling.

Disclosure statement

The author declares that there is no conflict of interest.

Funding

This study received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.