Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: a review.

Service providers and service users often have different perspectives on health and social care services. We have undertaken a systematic review of empirical data between 1988 and March 2011 relating to ALS service users' perspectives on health and social care services. Forty-seven texts were extracted and a narrative synthesis conducted. Few studies have explored ALS patients' experiences in relation to their satisfaction with services. Our review showed that ALS patients expect dignified care but they are often dissatisfied with health care services and have unmet expectations of their care. Most studies of decision-making and preferences for care have focused on end-of-life intervention. Various factors influence preferences for care from the service user perspective and people with ALS may adjust their use of services as they negotiate change. In conclusion, further research on the timeliness of services to meet changing needs of service users is required. The service user experience of allied health care services prior to end-of-life care also warrants investigation. Service providers need to support people with ALS as they negotiate feelings of acceptance and independence. Research to identify the key parameters of the ALS patient experience of services is required.