Livskvalitet og tilfredshet blant pasienter med amyotrofisk lateral sklerose

Abstract

Abstract

Background: ALS (Amyotrophic lateral sclerosis) is the most prevalent motor neuron disease. The only causal treatment available is the glutamate inhibitor Riluzole, postponing death by 3-6 months on average. At Ullevål Universitetssykehus the ALS-patients are being treated by a multidisciplinary team consisting of neurologist, occupational therapist, physical therapist, nurse and social worker. In this study we wanted to evaluate if the patients are satisfied with the different aspects of the treatment and try to find correlations between level of satisfaction and the patients’ quality of life and their function. Method: 14 patients were interviewed using a questionnaire asking how pleased they were with different aspects of the treatment and the team overall. Their quality of life was measured using the short form 36 health survey and their neurological dysfunction was assessed based on information in their journals. Results: The patients were generally satisfied with the treatment given. On a scale from 1-7, 1 being best, mean was in the range of 1.7-3.6 on different aspects of the team. Overall score was 2.2 (95% conf. interval 1.3-3.1). Patients were most satisfied with the help given to organize their new home situation and how easy it was to get in touch with different members of the team. They were least satisfied with help coping with the psychological reactions to the disease and the information given to their relatives. The patients generally scored very low on physical quality of life and high on mental quality of life. We found no correlations between how pleased the patients were and their quality of life or function. Conclusion: The ALS-patients at Ullevål Universitetssykehus are generally pleased with the treatment given. No correlations can be found between how pleased the patients were and their quality of life or function.