The terminal phase in Parkinson's disease: a mixed methods systematic review

Rogers, Alice; Trotter, Sophie; Richfield, Edward; Thomas, Sue; Wee, Bee

doi:10.12968/bjnn.2022.18.1.12

Cited by 1 publication

(1 citation statement)

References 24 publications

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“…In various diseases, including PD, there has been an increasing attempt to understand the best available evidence on target symptoms by combining self-reported outcome qualitative and quantitative data, 13 - 17 gathering valuable information on the effect of a given treatment or intervention on efficacy and HRQOL. A preliminary search of PROSPERO, MEDLINE, and Joanna Briggs (JBI) Evidence Synthesis confirmed no current or in-progress systematic review.…”

Section: Introductionmentioning

confidence: 99%

Patient With Parkinson Disease and Care Partner Perceptions of Key Domains Affecting Health-Related Quality of Life

Tosin,

Goetz,

Stebbins

2024

Neurology

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Background and Objectives To effectively customize Parkinson disease (PD) programs, it is important to incorporate the “individual's voice” and have a thorough understanding of the symptom priorities of people with PD (PwP) and care partners (CP). In this convergent integrated mixed-method systematic review, we aimed to analyze qualitative and quantitative evidence of PD motor and nonmotor symptoms affecting health-related quality of life (HRQOL) in PwP and CP, comparing priorities across different levels of disease severity. Methods We searched MEDLINE, PsycINFO, Web of Science, Embase, and Scopus; ProQuest Dissertations and Theses Global; and the Michael J. Fox Foundation Data Resources for studies published up to June 29, 2022. We included qualitative, quantitative, and mixed-method studies investigating PD symptom priorities among PwP and CP. We critically appraised eligible studies for methodological quality using the Mixed-Methods Appraisal Tool. Derived terms were mapped and coded according to thematic attribution. Independent syntheses of qualitative and quantitative evidence and transformation of quantitative data into qualitative formats were performed. Results Of the 7,716 identified studies, we included 70 that provided qualitative (n = 13), quantitative (n = 53), and mixed (n = 4) evidence. We included 604 mapped terms representing 11 PwP-identified and CP-identified motor and nonmotor symptom categories. Across all PD stages, both PwP and CP considered 5 domains more affecting their HRQOL, namely: “motor functionality,” “mood,” “cognition,” “gait, balance, posture, and falls,” and “nighttime sleep disorders.” In early disease, PwP and CP considered “mood” the domain that most affected their HRQOL. In advanced PD, PwP considered “pain” the domain that most affects their HRQOL, while CP considered “psychiatric symptoms.” The domain “gait, balance, posture, and falls” was equally considered by both PwP and CP as the second domain that most affects their HRQOL in the advanced stage of PD. Discussion The ranking of the priority of symptoms is largely shared by PwP and CP, and motor symptom priorities dominate the full disease spectrum. However, the nonmotor symptom priorities shift according to the disease severity stage. Tailored care and research require that providers consider these shifting priorities and incorporate the “individual's voice” into treatment decisions.

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Section: Introductionmentioning

confidence: 99%