ArticleJournal of Parkinson's disease2026
The Parkinson's Disease-Health Index: A novel, disease-specific patient-reported outcome measure.
Article in Journal of Parkinson's disease, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
- Measuring what matters: Evaluating quality of life instruments through the eyes of people with Parkinson's disease.Journal of Parkinson's disease · 2026Article
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Authors and funding
11 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BackgroundIn anticipation of future clinical trials involving individuals with Parkinson's disease (PD), it is important to have fully validated, clinically-relevant, responsive, disease-specific patient-reported outcome measures that are capable of serially measuring how an individual with PD feels and functions.ObjectiveTo develop and validate a disease-specific patient-reported outcome measure for PD that is sensitive in detecting clinically meaningful changes in multifactorial disease burden during clinical trials.MethodsWe conducted qualitative interviews and a cross-sectional study to identify the most important symptoms to individuals with PD. Symptom questions with the highest frequency and relative importance to the cross-sectional study cohort were selected for potential inclusion in the Parkinson's Disease-Health Index (PD-HI). The PD-HI was evaluated and refined through: 1) Qualitative beta interviews; 2) Test-retest reliability assessments; 3) Internal consistency analysis; and 4) Cross-sectional subgroup analysis of PD-HI subscale scores.ResultsTwenty individuals with PD participated in initial qualitative interviews and 404 individuals with PD participated in the cross-sectional study. Symptom questions representing 13 symptomatic themes of PD health were selected for inclusion in the PD-HI. Beta interview participants found the PD-HI to be comprehensive, relevant, and easy to use. The PD-HI demonstrated high test-retest reliability (ICC = 0.90) and internal consistency (α= 0.99). PD-HI total and subscale scores successfully distinguished between subgroups of participants with varying disease severity.ConclusionsInitial evaluation of the PD-HI demonstrates its content validity, construct validity, usability, and test-retest reliability as a patient-reported outcome tool for potential use in PD clinical trials.
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