The impact of physical impairment on emotional well-being in ALS

Abstract

There has been evidence that subjective quality of life in patients with amyotrophic lateral sclerosis (ALS) is comparatively good, unrelated to the state of physical functioning, so called ‘disability paradox’. Other studies show weak to moderate correlations between disease severity and emotional well-being. Our aim was to analyse the impact of physical impairment on emotional well-being when assessed disease-specifically and seen through the patient's eyes with additional clinical evaluation. In 121 patients emotional functioning was evaluated by the ALS Assessment Questionnaire (ALSAQ-40). Physical status was assessed by the ALS Functional Rating Scale-Extension (ALSFRS-EX) and Borg dyspnoea scales and by clinical examination (muscle strength and pulmonary function). Multiple regression and correlation analyses were performed. Results showed that physical impairment and progression rate of physical deterioration had a significant impact and explained some variance in emotional well-being (adjusted R² = 0.22). Pulmonary function and the sense of dyspnoea correlated significantly on a weak to moderate level with emotional well-being. In conclusion, disease-specific patient- reported outcome measurement instruments revealed a moderate but distinct impact of physical impairment on emotional well-being. This study challenges the ‘disability paradox’ and has relevant findings that can support the timely delivery of care for ALS patients.

Key words::

• Amyotrophic lateral sclerosis
• emotional well-being
• functional rating scale
• ALSAQ-40
• patient-reported outcome measure

Acknowledgements

The authors wish to express gratitude to the patients and their caregivers who participated in this study.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

This work was supported by the Stiftung für Medizinische Wissenschaft, Frankfurt am Main (to SV) and by the excellence program of the state of Saxony-Anhalt (to HJH)