Curable or treatable? The implications of different definitions of illness when treating patients suffering from amyotrophic lateral sclerosis

Abstract

People suffering from amyotrophic lateral sclerosis (ALS) have complex health and care needs. The purpose of this study was to gain insight into the gaps in the health and community service care provided to ALS patients. In order to ensure continuity of care, specialist centres have to build effective relationships with local primary health care services and community services, health managers, physicians, patients, families and the surrounding support networks. We undertook a qualitative study that examined the specialist centres in hospitals, communities and primary care services. In 2010 we carried out 47 semi-structured interviews and one group interview in Italy, targeting all those involved in ALS care, on all levels. We used purposive sampling to obtain maximum variation across professions, sectors and services. Participants reported gaps arising when local health managers have to assess patient eligibility for certain services. The need to set priorities when allocating resources means that professionals ‘categorize’ patients without considering the multidimensional nature of their needs. For instance, rehabilitation is generally guaranteed for people with temporary or non-progressive functional limitations, yet it is not granted to degenerative patients.Patients with similar physical conditions, with perceived differences of other kinds (i.e. curable vs. treatable), may experience differential access to care.