[Perspectives of patients with Duchenne muscular dystrophy: A focal group to improve healthcare quality].

INTRODUCTION

Duchenne muscular dystrophy is a complex disease that requires a multidisciplinary and coordinated approach. Given that therapeutic efforts are centred on improving the quality of life of the patient, the aim of this study is to find out the views of young people and adolescents with Duchenne muscular dystrophy, their families, and health professionals as regards the healthcare provided by the hospital in order to improve their quality of life.

METHODS

A qualitative study was conducted using 3 focal groups consisting of patients, families, and healthcare professionals. A thematic guide was prepared, and the information from the interviews was gathered using a sound recorder. In order to analyse the information, the transcriptions were coded and the significant data of each interview were extracted and grouped into various topics.

RESULTS/

CONCLUSIONS

The main worries of the 3 groups were along the same line. On the one hand, the importance of a coordinated multidisciplinary team in the same unit that provides the integral care. On the other hand, sport as a common interest in these adolescents, and the consideration of a positive relationship between leisure and quality of life, finding that their participation in physiotherapy groups of great use. To achieve this objective, it is necessary to improve the coordination between the hospital and the different groups. The parents also demanded better cover in the social and psychological care offered by the hospital. Lastly, the importance of humanising the care was mentioned (privacy, adapting of structures, transmission of information, sexuality…).