Ayse Kuspinar1, Kedar Mate2, Anne-Louise Lafontaine3, Nancy Mayo4. 1. School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada. Electronic address: kuspinaa@mcmaster.ca. 2. Center for Outcomes Research and Evaluation, McGill University Health Centre - Research Institute, Montreal, QC, Canada. 3. Neurology, McGill University Health Centre, Montreal, QC, Canada; Department of Neurology and Neurosurgery, McGill University, Montreal, QC, Canada. 4. Center for Outcomes Research and Evaluation, McGill University Health Centre - Research Institute, Montreal, QC, Canada; Department of Neurology and Neurosurgery, McGill University, Montreal, QC, Canada.
Abstract
BACKGROUND: Generic preference-based measures are used to assess the cost-utility of different interventions in Parkinson's disease (PD). However, the difficulty of using them in people with a particular health condition is that these measures may not encapsulate all of the domains that are impacted by the disease. OBJECTIVE: To contribute evidence towards the content validity of generic preference-based measures in people with PD. METHODS: Participants with PD were interviewed on a personalized measure of quality of life, the Patient Generated Index (PGI). The domains identified with the PGI were then categorized using the WHO's International Classification of Functioning, Disability and Health. The extent to which the generic measures (EQ-5D-5L, SF-6D, HUI II, and HUI III) included domains important to persons with PD was qualitatively evaluated. RESULTS: The study included seventy-six participants with PD (mean age 69 years). Dexterity, the top domain nominated by participants, was only included in 1 out of 4 of the generic measures. Fatigue, another commonly reported problem, was not included in 3 out of 4 measures. Sleep, dyskinesia and bowel/bladder problems were not included in any of the measures. CONCLUSION: Content validity is an essential step in the evaluation of whether a questionnaire truly measures the construct it purports to measure, in this case the construct being health related quality of life (HRQL). This study evaluated the content validity of the EQ-5D-5L, SF-6D, HUI II and HUI III in people with PD, and demonstrated that several important PD specific domains are missing from these measures.
BACKGROUND: Generic preference-based measures are used to assess the cost-utility of different interventions in Parkinson's disease (PD). However, the difficulty of using them in people with a particular health condition is that these measures may not encapsulate all of the domains that are impacted by the disease. OBJECTIVE: To contribute evidence towards the content validity of generic preference-based measures in people with PD. METHODS:Participants with PD were interviewed on a personalized measure of quality of life, the Patient Generated Index (PGI). The domains identified with the PGI were then categorized using the WHO's International Classification of Functioning, Disability and Health. The extent to which the generic measures (EQ-5D-5L, SF-6D, HUI II, and HUI III) included domains important to persons with PD was qualitatively evaluated. RESULTS: The study included seventy-six participants with PD (mean age 69 years). Dexterity, the top domain nominated by participants, was only included in 1 out of 4 of the generic measures. Fatigue, another commonly reported problem, was not included in 3 out of 4 measures. Sleep, dyskinesia and bowel/bladder problems were not included in any of the measures. CONCLUSION: Content validity is an essential step in the evaluation of whether a questionnaire truly measures the construct it purports to measure, in this case the construct being health related quality of life (HRQL). This study evaluated the content validity of the EQ-5D-5L, SF-6D, HUI II and HUI III in people with PD, and demonstrated that several important PD specific domains are missing from these measures.
Authors: Ava Mehdipour; Sachi O'Hoski; Marla K Beauchamp; Joshua Wald; Ayse Kuspinar Journal: Health Qual Life Outcomes Date: 2021-03-20 Impact factor: 3.186