University of Rhode Island, College of Nursing, Providence, RI, USA.
Critical Path Institute, Tucson, AZ, USA.
J Parkinsons Dis. 2023;13(4):589-607. doi: 10.3233/JPD-225122.
Adoption of new digital measures for clinical trials and practice has been hindered by lack of actionable qualitative data demonstrating relevance of these metrics to people with Parkinson's disease.
This study evaluated of relevance of WATCH-PD digital measures to monitoring meaningful symptoms and impacts of early Parkinson's disease from the patient perspective.
Participants with early Parkinson's disease (N = 40) completed surveys and 1:1 online-interviews. Interviews combined: 1) symptom mapping to delineate meaningful symptoms/impacts of disease, 2) cognitive interviewing to assess content validity of digital measures, and 3) mapping of digital measures back to personal symptoms to assess relevance from the patient perspective. Content analysis and descriptive techniques were used to analyze data.
Participants perceived mapping as deeply engaging, with 39/40 reporting improved ability to communicate important symptoms and relevance of measures. Most measures (9/10) were rated relevant by both cognitive interviewing (70-92.5%) and mapping (80-100%). Two measures related to actively bothersome symptoms for more than 80% of participants (Tremor, Shape rotation). Tasks were generally deemed relevant if they met three participant context criteria: 1) understanding what the task measured, 2) believing it targeted an important symptom of PD (past, present, or future), and 3) believing the task was a good test of that important symptom. Participants did not require that a task relate to active symptoms or "real" life to be relevant.
Digital measures of tremor and hand dexterity were rated most relevant in early PD. Use of mapping enabled precise quantification of qualitative data for more rigorous evaluation of new measures.
新的数字措施在临床试验和实践中的采用受到阻碍，因为缺乏可操作的定性数据来证明这些指标与帕金森病患者的相关性。
本研究从患者的角度评估了 WATCH-PD 数字措施对监测早期帕金森病的有意义症状和影响的相关性。
40 名早期帕金森病患者（N=40）完成了问卷调查和 1:1 的在线访谈。访谈结合了：1）症状映射，以描绘疾病的有意义症状/影响；2）认知访谈，以评估数字措施的内容有效性；3）将数字措施映射回个人症状，以评估从患者角度的相关性。使用内容分析和描述性技术来分析数据。
参与者认为映射非常投入，有 39/40 名参与者报告说能够更好地沟通重要症状和措施的相关性。大多数措施（9/10）在认知访谈（70-92.5%）和映射（80-100%）中都被评为相关。与超过 80%的参与者的主动困扰症状相关的两项措施（震颤、形状旋转）。如果任务符合三个参与者情境标准，则通常被认为是相关的：1）理解任务测量的内容；2）相信它针对 PD 的重要症状（过去、现在或将来）；3）相信该任务是对该重要症状的良好测试。参与者不需要任务与主动症状或“真实”生活相关才能相关。
震颤和手部灵巧性的数字措施在早期 PD 中被评为最相关。使用映射可以对定性数据进行精确量化，以便更严格地评估新措施。
