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Five-year study of quality of life in myotonic dystrophy.
Peric, S; Vujnic, M; Dobricic, V; Marjanovic, A; Basta, I; Novakovic, I; Lavrnic, D; Rakocevic-Stojanovic, V.
Afiliación
  • Peric S; Neurology Clinic, Clinical Center of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia. stojanperic@gmail.com.
  • Vujnic M; Department of Pathophysiology, Faculty of Medicine, University of Banja Luka, Banja Luka, Republic of Srpska, Bosnia and Herzegovina.
  • Dobricic V; Neurology Clinic, Clinical Center of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia.
  • Marjanovic A; Neurology Clinic, Clinical Center of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia.
  • Basta I; Neurology Clinic, Clinical Center of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia.
  • Novakovic I; Neurology Clinic, Clinical Center of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia.
  • Lavrnic D; Institute of Human Genetics, School of Medicine, University of Belgrade, Belgrade, Serbia.
  • Rakocevic-Stojanovic V; Neurology Clinic, Clinical Center of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia.
Acta Neurol Scand ; 134(5): 346-351, 2016 Nov.
Article en En | MEDLINE | ID: mdl-27696366
Background - Myotonic dystrophy type 1 (DM1) is the most common muscular dystrophy in adults. There is a complete lack of studies that assessed quality of life (QoL) trajectory during time in DM1 cohorts. Aim - To analyze changes of QoL in patients with DM1 during a 5-year follow-up period and to assess responsiveness of the SF-36 questionnaire. Patients and Method - At the baseline, this study comprised 84 DM1 patients, of whom 62 were retested after the mean period of 64.2 ± 3.9 months. Severity of muscular weakness was assessed using the Muscular Impairment Rating Scale (MIRS). Patients completed Serbian version of the SF-36 questionnaire as a measure of health-related QoL. Results - After 5 years, MIRS score of our DM1 patients showed significant progression of 0.5 grade (P < 0.01). All mental subdomains, role physical, and total SF-36 scores significantly improved after 5 years (P < 0.01). Unexpectedly, worsening of muscular weakness from mild to severe was in association with improvement of QoL. Conclusion - QoL improved in our cohort of DM1 patients during a 5-year period despite the progression of the disease. SF-36 should be used with caution as a patient-reported outcome measure in DM1 clinical trials.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Progresión de la Enfermedad / Distrofia Miotónica Tipo de estudio: Observational_studies / Prognostic_studies Aspecto: Patient_preference Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Acta Neurol Scand Año: 2016 Tipo del documento: Article Pais de publicación: Dinamarca
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Progresión de la Enfermedad / Distrofia Miotónica Tipo de estudio: Observational_studies / Prognostic_studies Aspecto: Patient_preference Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Acta Neurol Scand Año: 2016 Tipo del documento: Article Pais de publicación: Dinamarca