Quality of Life: Issues for Persons with Neuromuscular Diseases

Abstract

Improving quality of life has always been a goal of rehabilitation medicine. However, health care providers often do not know much about the quality of life of individuals with neuromuscular diseases, nor what factors are critical to achieving a good quality of life. Lack of knowledge about subjective quality of life factors can negatively influence expectations and selection of treatments. In the most glaring cases, a physician's subjective but incorrect assessment of a disabled individuals' quality of life may prevent life-sustaining interventions. As a group, the quality of life of individuals with NMD is not much different than nondisabled controls and is substantially better than presumed by the general public and, often times, by health care workers. Nevertheless, their quality of life is reduced in certain areas. Surprisingly, level of disability is not a critical factor that significantly alters life satisfaction. Presumably, this is because physical functioning has been adequately managed. The greatest problems that individuals with neuromuscular disease identified were: lack of information about the disease and services; poor coordination of services; negative attitudes; and a diminished expectation of their potential. In addition, people with severe disabilities had significant problems obtaining, financing, and managing personal care attendants. Factors related to a good quality of life were related to perceived control, perceived health status, but not disability. The more that people could do for themselves, either on their own or with personal care assistants, assistive devices, and use of technology, the better their quality of life.