Illness trajectories in patients suffering from ALS: a qualitative study

Abstract

Background: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with a progressive and rapid course. To date, there are few qualitative studies on ALS patients’ illness narratives and no research combining a comprehensive understanding of ALS patients’ psychological characteristics with illness progression. The aim of this study is to identify illness trajectories in amyotrophic lateral sclerosis by analysing personal, social and functional dimensions related to ALS progression. Methods: Eighteen patients in care at a Department of Neurology in Northern Italy participated in the study. We used ALSFRSr to measure physical impairment, CRIq for cognitive reserve, semi-structured interviews and dependency grids to assess personal experience and the distribution of dependency. To assess the progression of the disease, ALSFRS-R was re-administered after about eight months and mortality rate was considered. Data was analysed using the Grounded Theory approach. Findings: Illness progression changed according to the perception of the disease, the trust placed in medicine, self-construction, and the distribution of dependency. On the basis of these categories, cases that had similar experiences were grouped, and four illness trajectories were identified: acceptance, threat, denial and guilt. Discussion: The findings highlight that it is possible to identify different illness trajectories in ALS and subsequently construe personalized intervention strategies.