The linking of amyotrophic lateral sclerosis disease-specific quality of life instruments to ICF with refined rules

Aim: Quality of life (QoL) has emerged as a significant concept in the domains of healthcare and medicine. Amyotrophic Lateral Sclerosis (ALS) reduces the QoL of individuals by affecting various systems. The aim of this study is to link ALS-specific QoL assessments to ICF components. Material and Methods: The ALS assessment questionnaire (ALSAQ-40) and short form (ALSAQ-5), and the ALS-specific quality of life revised (ALSQoL-R) and short form (ALSQoL-SF) were linked to ICF using refined rules by two independent researchers. Results: Statistical analysis results showed that the kappa value of 81.3% demonstrated almost perfect agreement between the researchers. A total of 115 concepts were defined in the study. Of the linked concepts, 54 were body functions, 54 were activity and participation, and 4 were environmental factors. All the instruments had items linked with items b152 "Emotional functions" and d330 "speaking" components. Discussion: The majority of the items of the ALSAQ-5, ALSAQ-40, ALSSQoL-SF, and ALSSQoL-R were linked to the activity and participation categories of ICF. The ALSQoL-R, ALSQoL-SF, and ALSAQ-40 were linked mostly to body functions. It was seen that ALSQoL-R had the most unique linked concepts in body functions, and ALSAQ-40 had the most comprehensive linked concepts in the context of activity and participation. It can be recommended that ALSspecific QoL instruments to be developed in the future include domains of ICF, products and technology, natural environment and human -made changes to the environment, services, systems and policies, recreation, and leisure.