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Disabil Rehabil. 2019 Feb;41(3):333-340. doi: 10.1080/09638288.2017.1390695. Epub 2017 Oct 17.

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

Author information

1
a Department of Occupational Therapy, Physiotherapy and Radiography, Faculty of Health and Social Sciences , Western Norway University of Applied Sciences , Bergen , Norway.
2
b Department of Sports Sciences and Clinical Biomechanics , Research Unit of Musculoskeletal Function and Physiotherapy, University of Southern Denmark , Odense , Denmark.
3
c Department of Physical Medicine and Rehabilitation , Haukeland University Hospital , Bergen , Norway.
4
d Uni Research Health, Uni Research , Bergen , Norway.
5
e Department of Psychosocial Science, Faculty of Psychology , University of Bergen , Bergen , Norway.

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; diagnostic self evaluation; illness perceptions; subjective health complaints; surveys and questionnaires

PMID:
29041819
DOI:
10.1080/09638288.2017.1390695
[Indexed for MEDLINE]

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