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Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome.
Disabil Rehabil 2019; :1-8DR

Abstract

AIM

Among the Ehlers-Danlos syndromes, the hypermobile subtype (hEDS) is the most common. The variety, accumulation and duration of the painful symptoms make hEDS a chronic and highly disabling condition. Identifying drivers of pain and mobility disability in hEDS is necessary to provide adapted prevention and intervention programs.

METHODS

A cross-sectional sample of 75 adults with hEDS according to Villefranche criteria (67 women; 36 years, SD = 11.2) responded to self-assessment questionnaires regarding psychological (negative thoughts and emotions), health (pain, fatigue, diagnostic delay, body mass index, and mobility disability) and socio-demographic variables.

RESULTS

Forty-three percent of the participants suffer from severe pain, and two thirds suffer from a high level of mobility disability. Multivariate analyses show that delay of diagnosis, being professionally active and thoughts of helplessness are variables that increase the likelihood of severe pain, whereas age, fatigue, and body mass index predict mobility disability.

CONCLUSION

These results confirm previous research concerning the high disease burden observed in hEDS patients, and highlight the importance of multidisciplinary management that includes nutritional and psychological advice to address this pathology. Increasing awareness of the clinical aspects of hEDS among physicians is necessary to reduce diagnostic delay and minimize negatives outcomes. Implications for Rehabilitation A high proportion of patients with hypermobile Ehlers-Danlos syndrome suffer from severe pain (>42%) and a high level of mobility disability (>65%). Different psychosocial and health variables predict pain and mobility disability in patients with hypermobile Ehlers-Danlos syndrome. Awareness concerning the clinical picture of hypermobile Ehlers-Danlos syndrome among health care professionals is necessary to reduce diagnosis delay and the burden of the disease.

Authors+Show Affiliations

a Department of Psychology , Anglia Ruskin University , Cambridge , UK.b Faculty of Medecine , University Paris-Est Créteil , Créteil , France.c Functional Rehabilitation Center , Evry Hospital , Evry , France.d Laboratory of Psychopathology and Health Processes (EA 4057) , University Paris Descartes-Sorbonne Paris Cité , Boulogne-Billancourt , France.d Laboratory of Psychopathology and Health Processes (EA 4057) , University Paris Descartes-Sorbonne Paris Cité , Boulogne-Billancourt , France.d Laboratory of Psychopathology and Health Processes (EA 4057) , University Paris Descartes-Sorbonne Paris Cité , Boulogne-Billancourt , France. e Department of Emergency Psychiatry and Acute Care , CHU Montpellier , Montpellier , France.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31060411

Citation

Kalisch, Larissa, et al. "Predictors of Pain and Mobility Disability in the Hypermobile Ehlers-Danlos Syndrome." Disability and Rehabilitation, 2019, pp. 1-8.
Kalisch L, Hamonet C, Bourdon C, et al. Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome. Disabil Rehabil. 2019.
Kalisch, L., Hamonet, C., Bourdon, C., Montalescot, L., de Cazotte, C., & Baeza-Velasco, C. (2019). Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome. Disability and Rehabilitation, pp. 1-8. doi:10.1080/09638288.2019.1608595.
Kalisch L, et al. Predictors of Pain and Mobility Disability in the Hypermobile Ehlers-Danlos Syndrome. Disabil Rehabil. 2019 May 7;1-8. PubMed PMID: 31060411.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome. AU - Kalisch,Larissa, AU - Hamonet,Claude, AU - Bourdon,Caroline, AU - Montalescot,Lucile, AU - de Cazotte,Cécile, AU - Baeza-Velasco,Carolina, Y1 - 2019/05/07/ PY - 2019/5/8/entrez KW - Ehlers-Danlos syndrome KW - delayed diagnosis KW - fatigue KW - joint instability KW - mobility limitation KW - pain SP - 1 EP - 8 JF - Disability and rehabilitation JO - Disabil Rehabil N2 - AIM: Among the Ehlers-Danlos syndromes, the hypermobile subtype (hEDS) is the most common. The variety, accumulation and duration of the painful symptoms make hEDS a chronic and highly disabling condition. Identifying drivers of pain and mobility disability in hEDS is necessary to provide adapted prevention and intervention programs. METHODS: A cross-sectional sample of 75 adults with hEDS according to Villefranche criteria (67 women; 36 years, SD = 11.2) responded to self-assessment questionnaires regarding psychological (negative thoughts and emotions), health (pain, fatigue, diagnostic delay, body mass index, and mobility disability) and socio-demographic variables. RESULTS: Forty-three percent of the participants suffer from severe pain, and two thirds suffer from a high level of mobility disability. Multivariate analyses show that delay of diagnosis, being professionally active and thoughts of helplessness are variables that increase the likelihood of severe pain, whereas age, fatigue, and body mass index predict mobility disability. CONCLUSION: These results confirm previous research concerning the high disease burden observed in hEDS patients, and highlight the importance of multidisciplinary management that includes nutritional and psychological advice to address this pathology. Increasing awareness of the clinical aspects of hEDS among physicians is necessary to reduce diagnostic delay and minimize negatives outcomes. Implications for Rehabilitation A high proportion of patients with hypermobile Ehlers-Danlos syndrome suffer from severe pain (>42%) and a high level of mobility disability (>65%). Different psychosocial and health variables predict pain and mobility disability in patients with hypermobile Ehlers-Danlos syndrome. Awareness concerning the clinical picture of hypermobile Ehlers-Danlos syndrome among health care professionals is necessary to reduce diagnosis delay and the burden of the disease. SN - 1464-5165 UR - https://www.unboundmedicine.com/medline/citation/31060411/Predictors_of_pain_and_mobility_disability_in_the_hypermobile_Ehlers_Danlos_syndrome_ L2 - http://www.tandfonline.com/doi/abs/10.1080/09638288.2019.1608595 DB - PRIME DP - Unbound Medicine ER -