Patients' perspectives of the role of care providers in amyotrophic lateral sclerosis.

ABSTRACT

Interviews with 41 patients with amyotrophic lateral sclerosis regarding their perspectives of the roles of doctor, nurse, and allied health personnel showed that emotional support, information, and access to assistive devices were the primary expectations that they held for each of these professional roles. In addition, physicians were expected to evaluate the progress of the disease, help with immediate problems, and continue research to find a cure. Patients wanted to see a physician at each clinic visit. In being given the diagnosis of amyotrophic lateral sclerosis, patients expected the physician to be straightforward, honest but not premature, sensitive to patients' readiness for information, and to convey some degree of hope. Patients were accurate in their knowledge of the disease, but came to the clinic expecting help in managing the illness.