The prevalence and severity of disease-related disabilities and their impact on quality of life in neuromuscular diseases

Abstract

Purpose: People with neuromuscular disease experience lower quality of life levels than people from the general population. We examined the prevalence and severity of a broad range of neuromuscular disease-related disabilities and their impact on health-related quality of life.

Materials and methods: A cross-sectional postal survey study was conducted among patients diagnosed with neuromuscular disease. Patients completed the Neuromuscular Disease Impact Profile, a disease-related disability impact questionnaire, and two generic health-related quality of life questionnaires: the medical outcome study Short Form Questionnaire and the World Health Organization Quality of Life-bref. The impact of disabilities on quality of life was estimated using multiple regression analyses.

Results: Six hundred sixty two patients (68% response rate) completed the questionnaires. There were no differences in quality of life between diagnosis-based subgroups. ‘Impairments in muscle functions’ had the highest prevalence and severity scores in the total sample and diagnosis-based subgroups. Neuromuscular disease-related disabilities showed strong and independent associations with all aspects of health-related quality of life. ‘Impairments in mental functions and pain’ was the most important predictor of health-related quality of life followed by ‘restrictions in participation in life situations’.

Conclusions: Although ‘impairment in muscle functions’ is the most prevalent and severe disability, the ‘impairments in mental functions and pain’ have a strong association with health-related quality of life in patients with a neuromuscular disease.

Implications for rehabilitation

• Disease-related disabilities have a strong and independent associations with all aspects of health-related quality of life.

• Although health-related domains of quality of life are affected by the neuromuscular disease, the general quality of life is quite good.

• The most prevalent and severe disability in total group and diagnosis-based subgroups is ‘impairments in muscle functions’.

• The most significant predictor in health-related quality of life is ‘impairments in mental functions and pain’.

Keywords:

• Neuromuscular disease
• Neuromuscular Disease Impact Profile
• disability
• health-related quality of life

Acknowledgements

We wish to thank the patients who participated in this study and shared their personal information about the consequences of their disease by taking the time to complete our questionnaires. We thank the students who assisted in data collection: Ronald Brans, Kyra van der Beek, Hanna Bosman, Annelies Verschure, Carolien Verschure and Marieke Verschure. This study was supported by the Neurology department of the University Medical Center Groningen.

Disclosure statement

The authors report no declarations of interest.

This study received no funding. It was a piece of research conducted as part of a doctoral degree.