Illness perceptions, mood and health-related quality of life in patients with amyotrophic lateral sclerosis

Objectives: To divide amyotrophic lateral sclerosis (ALS)patients in two clusters according to their illness representation, and to identify, between the two clusters, the differences in functional state, mood, and quality of life. Methods: Seventy four patients with ALS were recruited at our ALS Centre from different Italian regions, having been for multidisciplinary consultations. The patients' functional impairment was evaluated by the ALS Functional Rating Scale as well as the Bulbar Score and Forced Vital Capacity. Psychological Characteristics and quality of life of ALS patients were evaluated by Profile of Mood State, Illness Perception Questionnaire, and 36-item Short Form Health Survey. Results: Only few of the ALS patients studied showed critical mood ratings. On the whole, the perceived quality of life, mood state, and the dimensions relating to their illness representation seem to be correlated to the functional state and respiratory capacity. The clustering of patients according to their illness representations allowed to highlight that ALS patients can be divided into two groups: adaptors and nonadaptors. The patients of the two groups, adaptors and nonadaptors, differed in respiratory capacity as well as in their mood and health-related quality of life. Conclusions: This study supports the Common Sense Model (CSM) of illness representation when considering ALS patients. Their psychological reactions to illness and quality of life depend not only on the severity of the illness but also on the way the illness is represented. Therefore, CSM could become the theoretical framework for psychological interventions in ALS patients.