Abstract
ObjectiveTo describe illness cognitions among patients with amyotrophic lateral sclerosis (ALS), to study cross-sectional associations between illness cognitions and health-related quality of life (HRQoL) and to study the predictive value of illness cognitions measured shortly after the diagnosis for HRQoL at follow-up. MethodsProspective longitudinal design. We administered Self-report questionnaires at study onset (n = 72) and follow-up (n = 48). Median follow-up period was 10.0 months. At baseline median ALS Functional Rating Scale-Revised was 43, median time since onset of symptoms was 13.6 months, 79% of patients presented with spinal onset. Illness cognitions Helplessness, Acceptance and Disease Benefits were measured with the Illness Cognitions Questionnaire (ICQ) and HRQoL with the ALS Assessment Questionnaire (ALSAQ-40). Correlational and regression analyses were used. ResultsPatients experienced more Helplessness at follow-up. We found no significant changes in Acceptance or Disease Benefits at follow-up. In cross-sectional analyses, Helplessness was independently related to worse HRQoL at baseline (β = 0.44; p = .001) and Acceptance and Disease Benefits were independently related to worse HRQoL at follow-up (β = −0.17, p = .045) and (β = −0.186, p = .03 respectively). Longitudinal analyses showed that, adjusted for disease severity at baseline, Helplessness at baseline was a predictor of worse HRQoL at follow-up (β = 0.43; p = .006). None of the illness cognitions were a significant predictor of HRQoL with adjustment for baseline HRQoL. ConclusionHelplessness was independently associated with HRQoL in the cross-sectional and longitudinal analyses. These results can help us identify patients shortly after diagnosis who might benefit from psychological interventions.
Highlights
Amyotrophic Lateral Sclerosis (ALS) is a fatal progressive neurode generative disorder
There is an increasing awareness that psychological factors are as sociated with health-related quality of life (HRQoL) among patients with amyotrophic lateral sclerosis (ALS)
At follow up Acceptance and Disease Benefits measured at follow up were independently related to HRQoL
Summary
Amyotrophic Lateral Sclerosis (ALS) is a fatal progressive neurode generative disorder. The concept of illness cognitions and related concepts such as ap praisals, illness beliefs, or illness perceptions refer to the way people think about and perceive their disease [3,4,5]. The importance of this is increasingly being recognised across a broad range of conditions, in cluding stroke [6], cancer [7,8,9,10], Huntington [11], Parkinson's disease [12], multiple sclerosis [13], spinal cord injury [14] and muscle disease [15].
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