Cross‐sectional and longitudinal correlations between disease progression and different health‐related quality of life domains in persons with amyotrophic lateral sclerosis

Abstract

In ALS it would be expected that quality of life (QoL) would be decreased. However, studies to date show diverging results. Our study focuses on how ALS affects QoL on the different domains of the SF‐36 cross‐sectionally and during progression. The method used was a prospective cohort study, with assessments at baseline, at six months, and at one year. Patients were included with possible, probable or definite ALS according to the revised El Escorial criteria and were between 30 and 70 years of age. ALS functional rating scale was used to establish disease status, SF‐36 as QoL scale. At baseline 73 completed ALSFRS forms were available and 62 completed SF‐36 forms.The ALSFRS showed disease progression. SF‐36 scores showed lower QoL scores of persons with ALS compared to the general population both in cross‐sectional and longitudinal aspects in the domains of Physical Functioning, Role Physical, and Social Functioning, but similar compared with the general population in the Mental Health and Role Emotional domains. This study shows deteriorating physical health but stable mental health, thereby illustrating the diverging correlations between ALS severity and HRQoL. The diverging pattern of physical and mental health suggests a frame‐shift in the experience of HRQoL.

• ALS
• motor neuron disease
• quality of life
• disease progression