Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type.
OBJECTIVE
To investigate the musculoskeletal complaints, physical activity (PA) and health-related quality of life (HRQoL) in patients with the Ehlers-Danlos syndrome hypermobility type (EDS-HT).


METHODS
Thirty-two female EDS-HT patients as defined by the Villefranche criteria and 32 gender- and age-matched healthy control subjects participated in the study. Data about musculoskeletal complaints were collected from a specific form developed for the study. Daily PA and HRQoL were evaluated by the Baecke questionnaire and the RAND 36-Item Health Survey (distributed by RAND), respectively.


RESULTS
A significant presence of joint pain, joint dislocations, muscle cramps, tendinitis, fatigue and headache were revealed in the EDS-HT patient group. Joint pain was reported as the most frequent and most severe symptom. The habitual PA level was diminished in the patient group. Specifically, EDS-HT subjects had significantly lower sport participation, but a comparable leisure time excluding sports compared to the healthy control subjects. All eight HRQoL dimensions of the RAND-36 and both physical and emotional summary scores were significantly impaired in EDS-HT.


CONCLUSIONS
EDS-HT is characterised by various severe musculoskeletal complaints and has a detrimental effect on the habitual level of PA and HRQoL, in both physical and psychosocial dimension. An appropriate treatment and management in healthcare is needed.
Rombaut
Lies
L
Department of Rehabilitation Sciences and Physiotherapy, Artevelde University College, Ghent University, and Centre of Medical Genetics, Ghent University Hospital, Ghent, Belgium. lies.rombaut@ugent.be
Malfait
Fransiska
F
Cools
Ann
A
De Paepe
Anne
A
Calders
Patrick
P
D000328:Adult; D000368:Aged; D018771:Arthralgia / Q000503:physiopathology; D016022:Case-Control Studies; D004535:Ehlers-Danlos Syndrome / Q000503:physiopathology* / Q000523:psychology*; D005221:Fatigue / Q000503:physiopathology; D005260:Female; D006261:Headache / Q000503:physiopathology; D006801:Humans; D004204:Joint Dislocations / Q000503:physiopathology; D007899:Leisure Activities; D008875:Middle Aged; D009043:Motor Activity / Q000502:physiology*; D009120:Muscle Cramp / Q000503:physiopathology; D011788:Quality of Life; D012720:Severity of Illness Index; D013177:Sports; D013180:Sprains and Strains / Q000503:physiopathology; D052256:Tendinopathy / Q000503:physiopathology