Patient Related Outcome Measures (Jun 2021)
Do Generic Preference-Based Measures Accurately Capture Areas of Health-Related Quality of Life Important to Individuals with Amyotrophic Lateral Sclerosis: A Content Validation Study
Abstract
Nicole Peters,1 Vanina Dal Bello-Haas,1 Tara Packham,1 Marvin Chum,2 Colleen O’Connell,3 Wendy S Johnston,4 Joy C MacDermid,5 John Turnbull,2 Jill Van Damme,1 Ayse Kuspinar1 1School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada; 2Department of Medicine, McMaster University, Hamilton, ON, Canada; 3Stan Cassidy Centre for Rehabilitation, Fredericton, NB, Canada; 4Department of Medicine, University of Alberta, Edmonton, AB, Canada; 5School of Physical Therapy, Western University, London, ON, CanadaCorrespondence: Ayse KuspinarSchool of Rehabilitation Science, McMaster University, Hamilton, ON, CanadaTel +1 905-525-9140 Ext. 27823Email [email protected]: The objectives of this study were to 1) assess the content validity of generic preference-based measures (GPBMs), and (2) examine the convergent validity of the EuroQol 5 Dimension 5 Level (EQ-5D-5L), against the Patient Generated Index (PGI) in Amyotrophic Lateral Sclerosis (ALS).Methods: Participants were recruited from 3 clinical sites across Canada. The PGI, EQ-5D-5L and Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) were administered through an online or hardcopy survey and scores compared for convergent validation. Domains nominated by participants as important to their health-related quality of life were generated using the PGI, classified using the International Classification of Functioning, Disability and Health (ICF) and mapped onto GPBMs to determine content coverage.Results: Fifty-two participants (N=28 female; 61.3 ± 11.6 mean age ± standard deviation (SD); 3.5 ± 2.9 mean ± SD years since diagnosis) completed this study. The top three ICF domains identified by participants were recreation and leisure, lower limb mobility, and interpersonal relationships. The Quality of Well-Being Self-Administered (QWB-SA) scale had the highest content coverage (87%) and the Health Utilities Index 3 (HUI3) had the lowest (33%). Two domains were covered by all GPBMs and no GPBM included all domains identified as important by participants. A moderate correlation coefficient of 0.52 between the PGI and EQ-5D-5L was found.Conclusion: The majority of GPBMs covered only approximately half of the domains important to individuals with ALS suggesting the need for an ALS specific preference-based measure to better reflect the health-related quality of life of this population.Keywords: amyotrophic lateral sclerosis, health-related quality of life, patient reported outcome measures, psychometric properties, economic evaluation
