Original researchPrevalence of Fatigue, Pain, and Affective Disorders in Adults With Duchenne Muscular Dystrophy and Their Associations With Quality of Life
Section snippets
Participant selection and procedure
This study was part of a larger cross-sectional study into the functioning and quality of life of adults with DMD and their informal caregivers.19, 20 Patients were recruited by all 4 Centres for Home Ventilation in the Netherlands, and by Dutch rehabilitation centers and the Dutch patient organization for neuromuscular diseases, Spierziekten Nederland. Inclusion criteria were a diagnosis of DMD and an age ≥20 years. Subjects were interviewed during 2 consecutive visits to their homes. The
Results
We located 151 patients; 80 agreed to participate in the study. One patient was excluded because too much data were missing. The mean age and the distribution of ventilation type (none, noninvasive, or invasive) of the patients who refused to participate in the study were comparable to those of the patients who agreed to participate. The mean age of the participants was 28.2 years (range, 20–44y). All participants but one were dependent on mechanical ventilation, with 46% receiving noninvasive
Discussion
Our study population of adult men with DMD is a severely disabled group. To date, data on prevalence of fatigue, pain, and affective disorders have been limited in adults with DMD. Of the 4 conditions we investigated, fatigue and pain occurred very frequently in this population, and symptoms of affective disorders only slightly less so. Nevertheless, most participants rated their subjective quality of life as good or very good.
Previously, Elsenbruch et al32 studied health-related quality of
Conclusions
Experienced fatigue, pain, anxiety, and depression occur frequently in adults with DMD, often concurrently, and may be underdiagnosed. In those men with a poor quality of life, these conditions have a higher frequency, except for pain, which has a high prevalence in both poor and good quality of life. Fatigue, especially, is related to overall quality of life and the physical health domain of quality of life. Pain is more frequent in those with a poor quality of life, but still has a high
Supplier
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SPSS version 20; IBM Corp.
Acknowledgments
For recruiting participants for this study, we thank the Departments of Home Mechanical Ventilation of the University Medical Centers at Rotterdam (J. Rischen-Vos, MD), Groningen (P.J. Wijkstra, MD, PhD), Maastricht (N.A.M. Cobben, MD, PhD), and Utrecht (M.J. Kampelmacher, MD, PhD), and patient organization Spierziekten Nederland.
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Cited by (0)
Supported by the Children's Fund Adriaanstichting (KFA grant no. 2005/0143), Johanna Children's Fund (JKF grant no. 2005/0143), and Nuts Ohra Foundation (grant no. SNO-T-0701-85).
Disclosures: none.