Illness acceptance and quality of life in amyotrophic lateral sclerosis: the role of health and environmental factors

Purpose To determine the extent to which illness acceptance accounts for variability in health-related quality of life (HRQoL) among adults with amyotrophic lateral sclerosis (ALS) attending a hospital-based outpatient clinic, after controlling for sociodemographic and health variables. Materials and methods We conducted a single-center, cross-sectional study in a hospital outpatient clinic. Adults with ALS completed the World Health Organization Quality of Life-BREF (WHOQOL-BREF) and the Acceptance of Illness Scale (AIS), plus a sociodemographic and health questionnaire. Results Forty-five patients were analyzed (mean age 52 ± 14 years; 58% women). WHOQOL-BREF domain means were: physical 46.9 ± 14.1, psychological 51.2 ± 16.9, social 53.0 ± 24.6, environment 58.4 ± 18.4. Mean AIS was 20.4 ± 8.1. AIS correlated positively with all domains (r = 0.40–0.52, all p ≤ 0.006). In age- and sex-adjusted models, AIS independently predicted higher scores: physical β = 0.96 ( p = 0.003), psychological β = 0.94 ( p = 0.013), social β = 1.47 ( p = 0.003), environment β = 1.10 ( p = 0.025). Percutaneous endoscopic gastrostomy (PEG) was associated with lower physical and environment scores than oral feeding. Respiratory status differentiated physical and psychological scores. Better living conditions related to higher psychological and environment scores. Time from first symptoms to diagnosis correlated with AIS ( ρ = 0.37, p = 0.014). Conclusion Illness acceptance is a robust, independent correlate of HRQoL across domains in ALS. Care should pair symptom control with brief acceptance-focused, educational, and family communication interventions, and address environmental needs. Decisions on PEG and non-invasive ventilation (NIV) should include routine dietetic, psychological, and speech–language input. Longitudinal studies should test AIS as a mediator of somatic and environmental interventions on HRQoL.