From the Department of Neurological Sciences, Rush University, Chicago, IL.
Neurology. 2024 Feb 13;102(3):e208028. doi: 10.1212/WNL.0000000000208028. Epub 2024 Jan 12.
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.
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.
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.
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.
为了有效地定制帕金森病（PD）方案，纳入“个体声音”并深入了解 PD 患者（PwP）和护理伙伴（CP）的症状优先级至关重要。在这项汇聚式综合混合方法系统评价中，我们旨在分析定性和定量证据，了解 PD 运动和非运动症状对 PwP 和 CP 的健康相关生活质量（HRQOL）的影响，并比较不同疾病严重程度下的优先级。
我们检索了 MEDLINE、PsycINFO、Web of Science、Embase 和 Scopus；ProQuest Dissertations and Theses Global；以及 Michael J. Fox 基金会数据资源，检索截至 2022 年 6 月 29 日发表的研究。我们纳入了研究 PwP 和 CP 中 PD 症状优先级的定性、定量和混合方法研究。我们使用混合方法评价工具对合格研究进行了方法学质量的批判性评价。衍生术语根据主题归属进行映射和编码。对定性和定量证据进行独立综合，并将定量数据转化为定性格式。
在确定的 7716 项研究中，我们纳入了提供定性（n=13）、定量（n=53）和混合（n=4）证据的 70 项研究。我们纳入了 604 个代表 11 个 PwP 确定和 CP 确定的运动和非运动症状类别的映射术语。在所有 PD 阶段，PwP 和 CP 都认为以下 5 个领域对他们的 HRQOL 影响更大，即“运动功能”、“情绪”、“认知”、“步态、平衡、姿势和跌倒”和“夜间睡眠障碍”。在疾病早期，PwP 和 CP 认为“情绪”是影响他们 HRQOL 的主要因素。在晚期 PD 中，PwP 认为“疼痛”是影响他们 HRQOL 的主要因素，而 CP 则认为“精神症状”。“步态、平衡、姿势和跌倒”是 PwP 和 CP 认为在 PD 晚期第二大影响他们 HRQOL 的领域。
PwP 和 CP 对症状优先级的排序大致相同，运动症状优先级主导整个疾病谱。然而，非运动症状的优先级根据疾病严重程度阶段而变化。量身定制的护理和研究需要提供者考虑这些不断变化的优先级，并将“个体声音”纳入治疗决策。
