G.P.304

• Published in: Neuromuscular disorders : NMD Vol. 24; no. 9; p. 913
• Main Authors: Madsen, A, Rahbek, J, Werge, B, Marquardt, J, Gredal, O, Steffensen, B.F
• Format: Journal Article
• Language: English
• Published: 01.10.2014
• Subjects: Neurology
• ISSN: 0960-8966; 1873-2364
• DOI: 10.1016/j.nmd.2014.06.394

This study presents the results of a questionnaire survey in the growing Danish adult DMD population concerning daily life, social relations and perspectives on qualities of life (QOL). All Danish persons ⩾8 years ( n = 80) with a confirmed clinical diagnosis of DMD according to the diagnostic criteria (ENMC 1997) were invited to participate in the study. Each individual was interviewed in his home by two professionals from the National Danish Rehabilitation Centre for neuromuscular Diseases (RCfM) about his physical ability, health, social relations and daily life using a comprehensive questionnaire.79 people accepted the invitation. Two had been treated with steroids and were excluded from the data analysis. Median age of 77 participants was 27 years (18–46); 38 persons were >27 years old. All used a powered wheelchair during daytime, all but two were able to operate their wheelchair and use a computer. The majority ( n = 49) lived in their own home, four lived with a partner; two of them had children. Five lived in a public assisted facility. Mean age for leaving home was 23.5 years. All had completed elementary school; 16 had completed 12th grade; 11 had completed training or further education. Two were employed, 70 received a pension. All ⩾20 years of age had help around the clock. All had a good relationship with their family and almost everyone ( n = 74) had a least one friend. Although many of them missed a partner, 56% felt they had someone to share their life with. Nearly half of the participants were sexually experienced. All had their own car and the majority ( n = 59) felt they were able to participate in desired activities. Main interests were sports, gaming and music. The majority ( n = 62) considered their QOL as good and felt respected by society. Danish adult men with DMD live an independent life by means of technological aids and practical assistance. Although only few have an education, job experience or partner, life is considered as satisfactory.