EDSFatigue Is a Frequent and Clinically Relevant Problem in Ehlers-Danlos Syndrome
Section snippets
Patients
A cross-sectional design was used to assess fatigue in patients with EDS. We asked 500 members of the Dutch patient organization of EDS (VED: www.ved.nl) to participate, and 19 additional patients were recruited from the outpatient departments of the Radboud University Nijmegen Medical Centre; these latter patients were also included in a clinical study on neuromuscular features in EDS (14). Three hundred twenty-seven questionnaires were returned (63% response rate). The intention of the study
Results
Excluded were patients who were younger than 16 years (n = 16), patients in whom EDS had not been diagnosed (n = 30), and patients who had incompletely filled out the CIS fatigue severity scale (n = 8). Hence, 273 patients were included; in 53 of them the specific type of EDS was not (yet) known, although EDS was diagnosed by a medical specialist. In all other patients the EDS type was classified according to the diagnostic criteria (1). Demographic characteristics of the patients are
Discussion
This is the first in-depth questionnaire study of fatigue in EDS and shows that fatigue is a frequent and clinically relevant problem in EDS: 77% of EDS patients suffer from severe fatigue; and patients who are severely fatigued are more impaired and report a higher level of psychological distress. Patients with the hypermobility type EDS are most often severely fatigued. Furthermore, severe fatigue in EDS is related to sleep disturbances, concentration problems, social functioning,
Acknowledgments
We are grateful to R. Janse and C. Kruip for assistance in storage and analysis of the data, and to the members of the Dutch patient organization of EDS for filling out the questionnaires.
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N.C. Voermans was supported by a research grant of the NWO (Netherlands Organization for Scientific Research). The NWO had no influence on the design or outcome of the study; hence, N.C. Voermans was independent of this sponsor. None of the authors have any conflicts of interest to disclose. All authors of the article had access to the original data, have fulfilled the criteria for authorship, and have read and approved the final version of the article.