Subjective health complaints and illness perception amongst adults with joint hypermobility syndrome/Ehlers–Danlos syndrome-hypermobility type – a cross-sectional study

Lena Maria Hope*, Birgit Juul-Kristensen, Helene Løvaas, Camilla Løvvik, Silje Maeland

*Kontaktforfatter for dette arbejde

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

Resumé

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.

OriginalsprogEngelsk
TidsskriftDisability and rehabilitation
Vol/bind41
Udgave nummer3
Sider (fra-til)333-340
ISSN1464-5165
DOI
StatusUdgivet - 30. jan. 2019

Fingeraftryk

Joint Instability
Cross-Sectional Studies
Norway
Population
Patient Education

Citer dette

@article{7439956da8284ba7b6264fafb327204e,
title = "Subjective health complaints and illness perception amongst adults with joint hypermobility syndrome/Ehlers–Danlos syndrome-hypermobility type – 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, diagnostic self evaluation, illness perceptions, subjective health complaints, surveys and questionnaires, Prevalence, Cross-Sectional Studies, Humans, Middle Aged, Norway/epidemiology, Joint Instability/congenital, Male, Self Concept, Adult, Diagnostic Self Evaluation, Female, Surveys and Questionnaires, Ehlers-Danlos Syndrome/diagnosis",
author = "Hope, {Lena Maria} and Birgit Juul-Kristensen and Helene L{\o}vaas and Camilla L{\o}vvik and Silje Maeland",
year = "2019",
month = "1",
day = "30",
doi = "10.1080/09638288.2017.1390695",
language = "English",
volume = "41",
pages = "333--340",
journal = "Disability and Rehabilitation",
issn = "0963-8288",
publisher = "Taylor & Francis",
number = "3",

}

Subjective health complaints and illness perception amongst adults with joint hypermobility syndrome/Ehlers–Danlos syndrome-hypermobility type – a cross-sectional study. / Hope, Lena Maria; Juul-Kristensen, Birgit; Løvaas, Helene; Løvvik, Camilla; Maeland, Silje.

I: Disability and rehabilitation, Bind 41, Nr. 3, 30.01.2019, s. 333-340.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

TY - JOUR

T1 - Subjective health complaints and illness perception amongst adults with joint hypermobility syndrome/Ehlers–Danlos syndrome-hypermobility type – a cross-sectional study

AU - Hope, Lena Maria

AU - Juul-Kristensen, Birgit

AU - Løvaas, Helene

AU - Løvvik, Camilla

AU - Maeland, Silje

PY - 2019/1/30

Y1 - 2019/1/30

N2 - 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.

AB - 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.

KW - Joint instability

KW - diagnostic self evaluation

KW - illness perceptions

KW - subjective health complaints

KW - surveys and questionnaires

KW - Prevalence

KW - Cross-Sectional Studies

KW - Humans

KW - Middle Aged

KW - Norway/epidemiology

KW - Joint Instability/congenital

KW - Male

KW - Self Concept

KW - Adult

KW - Diagnostic Self Evaluation

KW - Female

KW - Surveys and Questionnaires

KW - Ehlers-Danlos Syndrome/diagnosis

U2 - 10.1080/09638288.2017.1390695

DO - 10.1080/09638288.2017.1390695

M3 - Journal article

C2 - 29041819

VL - 41

SP - 333

EP - 340

JO - Disability and Rehabilitation

JF - Disability and Rehabilitation

SN - 0963-8288

IS - 3

ER -