Mapping Relevance of Digital Measures to Meaningful Symptoms and Impacts in Early Parkinson’s Disease

Abstract

Background: 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. Objective: This study evaluated of relevance of WATCH-PD digital measures to meaningful symptoms and impacts of early Parkinson’s disease from the patient perspective. Methods: 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. Results: 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. Conclusion: 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.

Digital Mobility Measures: A Window into Real‐World Severity and Progression of Parkinson's Disease

“…We did not assess patients off medication or compare naive patients to those on medications or assess treatment effects. These and other important questions should be addressed in ongoing 42,45,50 and future studies. Nonetheless, this is one of the largest studies investigating digital mobility technology in PD.…”

“…In recent work, patients with PD shared their perspective that slowness of movement was among their most bothersome and important symptoms 40 . Patients reported that PD symptoms had the greatest impact on sleep, job functioning, exercise, communication, relationships, and sense of being, 41 aspects of daily living that can be partially reflected in real‐world function collected via digital measures 42 . Indeed our findings show that the measures most strongly associated with disease severity were not related to quality but rather to function coming from domains of sleep (NB) and activity quantity and distribution.…”

Relative Meaningfulness and Impacts of Symptoms in People with Early-Stage Parkinson’s Disease

“…As shown in Supplement B, interview questions focused on understanding PD symptoms, experiences, characteristics and impacts of symptoms, and relative bothersomeness. Symptom mapping [20] was used to delineate all personal symptoms and impacts as shown in Fig. 2.…”

“…2. Symptom mapping is a hybrid mixed-method technique that enables the collection of qualitative data in a quantifiable manner by active categorization of experiences inside of a structured framework [20]. Interviews were conducted by a qualitative researcher experienced in these methods (JM; white, female, PhD-prepared advanced practice nurse, unacquainted with participants).…”

“…Symptom mapping [20] During the interview, a detailed concept map of the individual's PD symptom experience was developed by the interviewer, as observed and directed by the participant via Zoom screen sharing [21]. Individual symptom maps were created using Xmind TM software, with map levels organized hierarchically top to bottom from "Most bothersome" to "No current issues," with an additional category "Not [personally] relevant to early PD".…”