Myasthenia gravis (M.g.) is a common neuromuscular disease with prevalences of 10 patients per 100000 residents. Progress in medical therapy has continuously increased life expectancy in M.g. patients. In this study we focused on the determinants of quality of life in M.g. patients. In collaboration with the German Myasthenia Association, the self-help organization for patients, 2150 patients were asked to work on a mailed questionnaire on health care situation. The questions were related to demographical data, impairments, therapeutical course, use of complementary therapies, illness related costs and quality of life (SF-36). 1525 patients (average age: 57 years; m/f: 40/60) participated resulting in a response rate of 71%. More than 70% of the patients had problems in using their arms and moving around, about 40% reported difficulties in swallowing and ptosis. Nearly all had received acetycholinesterase inhibitors and about 50% experienced thymectomy. Approximately 18% were treated by neurologists and 11% received care primarily from general practitioners. Despite coverage of neurological therapy by state health insurance, over 50% spent 25 to 500 USD monthly to ease illness related problems, mainly help in housekeeping and transportation. Quality of life was reduced in all dimensions of the SF-36, especially in vitality and experienced health. Decreased quality of life correlated significantly with increased impairments and the amount of money spent. The results indicate, that despite prolonged life-expectancy, patients quality of life is still reduced. Health care system should provide more measures for improving living situation of M.g. patients.
Learning Objectives: N/A.
Keywords: Quality of Life, Chronic Illness
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.