Experience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care. The case for a better understanding of patient experiences

Abstract

People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS is not always measured and service user perspectives are not usually included when evaluating outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, healthcare professionals? conceptualisation of outcomes in ALS care has excluded measures of patient satisfaction with services. Exploring the context of the ALS service user experience of care will identify a conceptual framework that will include the domains of satisfaction with care for patients with ALS. An instrument that draws on the ALS patient perspective of services, developed on the basis of qualitative investigation, should be used to measure satisfaction with services.