Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care

Abstract

People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS care is not always measured and service user perspectives are not usually included when evaluating the outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, health care professionals' conceptualization 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.

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

“…Studies of service users recruited from specialized ALS clinic settings have indicated high levels of satisfaction with dedicated multidisciplinary care 32,61. However, rigorous assessment of patient satisfaction with specialized multidisciplinary ALS care is yet to be conducted,42 and there is a need to explore the benefits to patients of specialized multidisciplinary ALS services in addition to survival times and health outcomes 57…”

“…However, well-timed decision-making remains a challenge for health professionals and patients 17,37,38. Specialized multidisciplinary clinical ALS services have emerged to provide a supportive environment for collaborative and patient-centered care,39,40 yet the impact of specialized multidisciplinary ALS services on decision-making is unknown 41,42. Additionally, there has been no evaluation of the benefits that specialized clinics provide in terms of patient satisfaction42 or patient-clinician relationships.…”

“…Specialized multidisciplinary clinical ALS services have emerged to provide a supportive environment for collaborative and patient-centered care,39,40 yet the impact of specialized multidisciplinary ALS services on decision-making is unknown 41,42. Additionally, there has been no evaluation of the benefits that specialized clinics provide in terms of patient satisfaction42 or patient-clinician relationships. Therefore, the aim of the present study was to investigate decision-making from the perspective of patients within specialized multidisciplinary clinical ALS services in an attempt to identify factors that influence decision-making for symptom management and quality of life.…”

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

“…The experiences of patients and carers in decision-making are distinct from those of health professionals,83 and require exploration to identify their distinct perspectives. More broadly, there has been no examination of the impact of specialized multidisciplinary ALS care on patient satisfaction,36 or health professional satisfaction and well-being. The emotional and professional difficulties faced by ALS and palliative care clinicians41 may be better supported within a dedicated model of ALS care.…”

“…Few studies have examined patient-centered care in specialized multidisciplinary ALS clinic settings,36 and we know very little of health professional experiences within multidisciplinary ALS care. A small number of studies of clinician perspectives have revealed the ethical, emotional, and professional difficulties encountered in managing patient deterioration 34,37–41.…”