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. 2025 Aug 28;272(9):598.
doi: 10.1007/s00415-025-13348-x.

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

Alberto de la Cuadra-Grande  1   2 , Javier Rejas  3 , Miguel Ángel Casado  4   5 , Manuel Monroy  6 , Miguel Ruiz  6
Affiliations

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

Alberto de la Cuadra-Grande et al. J Neurol. .

Abstract

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.

Keywords: PROMs; Parkinson’s disease; Patient-reported outcomes measures; Psychometric properties; Quality of life; Systematic literature review.

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Conflict of interest statement

Declarations. Conflicts of interest: The authors declare that they have no conflicts of interest. All authors have reviewed and validated the final version of this manuscript.

Figures

Fig. 1
Fig. 1
PRISMA flowchart of the screening and selection process. The list of abbreviations is provided in Online Resource 11. A Studies removed for this study’s purposes
See this image and copyright information in PMC

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