Validation of an Individualized Measure of Quality of Life, Patient Generated Index, for Use with People with Parkinson's Disease.

Ayse Kuspinar,Anne-Louise Lafontaine,Nancy Mayo,Kedar K V Mate

doi:10.1155/2020/6916135

Abstract

Methods Patients with PD completed the PGI and various standard patient-reported outcome (PRO) measures. The PGI and standard PRO measures were compared at the total score, domain, and item levels. Pearson's correlations and independent t-tests were used, as well as positive and negative predictive values. Results The sample (n = 76) had a mean age of 69 (standard deviation 9) and were predominantly men (59%). The PGI was moderately correlated (r = −0.35) with the standardized disease-specific QOL measure Parkinson's Disease Questionnaire (PDQ-8). Within one severity rating, agreement between the PGI and different standard outcome measures ranged from 85 to 100% for walking, 69 to 100% for fatigue, 38 to 75% for depression, and 20 to 80% for memory/concentration. Conclusion This study demonstrates that nominated areas of QOL on the PGI provide comparable results to standard PRO measures, and provides evidence in support of the validity of this individualized measure in PD.

Highlights

Parkinson’s disease (PD) affects all aspects of an individual’s life and is heterogeneous across people and time. e Patient Generated Index (PGI) is an individualized measure of quality of life (QOL) that allows patients to identify the areas of life that are important to them
Standard patient-reported outcome (PRO) measures of QOL generally have predetermined domains and response options (e.g., PDQ-39, SF-36). e underlying assumption with these measures is that (i) the same domains of life are important to all people, and (ii) for each domain, all people have the same needs and goals [7]
Individualized measures of QOL allow patients to identify the domains that are important to Neurology Research International them and to assign a weight on the relative importance of each domain. e Patient Generated Index (PGI) is an individualized measure of QOL (IQOL) that allows patients to nominate, rate, and value areas that have the most impact on their quality of life. e validity of the PGI has been tested in other health conditions [9,10,11,12], but not yet in PD

Summary

Introduction

Parkinson’s disease (PD) affects all aspects of an individual’s life and is heterogeneous across people and time. e Patient Generated Index (PGI) is an individualized measure of quality of life (QOL) that allows patients to identify the areas of life that are important to them. Is study demonstrates that nominated areas of QOL on the PGI provide comparable results to standard PRO measures, and provides evidence in support of the validity of this individualized measure in PD. Standard patient-reported outcome (PRO) measures of QOL generally have predetermined domains and response options (e.g., PDQ-39, SF-36). E underlying assumption with these measures is that (i) the same domains of life are important to all people, and (ii) for each domain, all people have the same needs and goals [7] These measures assume that there is equal weighting between the domains, or if weights do exist, they are based on values obtained from the general population who have never experienced the disease [8]

Objectives

Methods

Results