Bedürfnisse von Menschen, die an Multipler Sklerose leiden: Die Perspektiven von erkrankten Personen und ihren nächsten Angehörigen in der deutschsprachigen Schweiz

Abstract

Since there is no data available about the needs of people living with Multiple Sclerosis and significant others in Switzerland a questionnaire based cross sectional study was conducted with 878 patients and 615 family caregivers. This Swiss study used the addresses from the Swiss Multiple Sclerosis Society. The response rate was 35.2 % for patients and 70.1 % for significant others. Data analysis included descriptive and inferential statistics. Results showed that information needs are most important followed by consultation. 42.4 % of patients and 39.2 % of family caregivers need more information about alternative treatment options and 34.4 %, resp. 36.6 % about actual research results. For 39.5 % of patients, the possibility of using of their wheelchair in public is insufficient. Approximately a third of patients need more consultation in order to better manage cognitive impairment and fatigue. 30.9 % of family caregivers need more consultations in order to better manage their feelings of burden. Influencing factors of patients' need for consultation about fatigue are health status, quality of life, and anxiety. Patients' need for consultation about their management of cognitive impairment was influenced by health status, medication, and their ability of dealing with constraints and anxiety. The results showed that an enhancement of the quality of treatment and care based on patients' and family caregivers' needs are urgently needed.