Quality of life measures in Parkinson's disease: a systematic literature review of patient-reported outcomes measures (PROMs) and their psychometric properties.

BACKGROUND

Quality-of-life (QoL) measures are key for monitoring health of patients with Parkinson's disease (PD).

OBJECTIVE

This systematic review aimed to gather evidence on the psychometric properties of available patient-reported outcomes measures (PROMs) for assessing QoL in people with PD (PwPD).

METHODS

A search of PROMs was conducted in PubMed (MEDLINE), Embase, Scopus, Web of Science, PSICDOC, and 'gray literature' (April 2024, PROSPERO-ID: CRD42024526458). After screening and data extraction, in a two-phase procedure conducted by independent reviewers, a critical assessment of feasibility, validity (content, structural, known-group, and criterion) and reliability (internal consistency, test-retest, and measurement error) was conducted based on the COSMIN criteria for good psychometric properties.

RESULTS

The search identified 83 eligible studies from which 29 PROMs were gathered (15 PD-specific and 14 generic/unspecific PROMs validated for PD). All PROMs proved their feasibility and included common dimensions between them, suggesting adequate content validity. Among the 29 PROMs, 17 reported data on structural validity (58.6%), 20 on known-group validity (69.0%), 25 on criterion validity (86.2%), 23 on internal consistency (79.3%), 11 on test-retest validity (37.9%), and 4 on measurement error (13.8%). According to the COSMIN criteria, 6 PROMs have the potential to be the most suitable QoL measure for PwPD: PDQ-39, PDQ-8, PDQL, PDQUALIF, PIMS, and Neuro-QOL.

CONCLUSIONS

Several PROMs are feasible, valid, and reliable for measuring QoL in PwPD. However, further research ensuring their psychometric properties and cross-cultural adaptations are needed to recommend their use.