Poster
165
(#165) A Conceptual Model to Describe the Patient Experience of Parkinson's Disease Tremor
Psych Congress 2025
Abstract: Introduction: A conceptual disease model (CDM) was developed using qualitative research methodology to provide a comprehensive understanding of the patient experience with Parkinson's Disease-related tremor (PDT).
Methods: Adult participants (N=20) each completed a 60-minute web-based concept elicitation (CE) interview describing their experience with PDT. A semi-structured interview guide was used, which included open-ended and probing questions informed by a targeted conceptual literature review and interviews with five expert clinicians. Participants rated symptom severity and bothersomeness using numerical rating scales (0=not at all to 10=extremely) and described worst symptoms and impacts.
Results: Participants reported 39 signs/symptoms, 23 functional impacts, and 17 emotional difficulties of PDT. While most participants (70%) reported some variation in their daily tremor experience, hand tremor was reported by all with high severity (7.1/10) and bothersome (6.9/10) ratings. Tremors in the hands (100%), lack of body control (25%), rigidity (25%), balance problems (20%), and arm tremor (20%) were some of the most frequently-reported worst symptoms. The most reported impacts were related to hand mobility (100%) and emotional difficulties (95%). The most reported hand mobility impact was difficulty writing (n=15/20, 75%) and the most frequently reported emotional difficulties included feeling anxious (70%), nervous in social settings (70%), annoyed (70%), and embarrassed (70%). Difficulty with mobility (47%) was most reported as one of the worst impacts.
Conclusion: A new CDM describes the humanistic burden of PDT by identifying symptoms and impacts that are most relevant from the patient perspective, and identifies unmet treatment needs that are most important to patients.
Short Description: Results from concept-focused qualitative research (literature review, clinician interviews, and patient interviews) describe signs, symptoms, and impacts that are important and relevant to patients with Parkinson's Disease Tremor (PDT) and yield a comprehensive conceptual disease model for PDT.
Name of Sponsoring Organization(s): Jazz Pharmaceuticals
Methods: Adult participants (N=20) each completed a 60-minute web-based concept elicitation (CE) interview describing their experience with PDT. A semi-structured interview guide was used, which included open-ended and probing questions informed by a targeted conceptual literature review and interviews with five expert clinicians. Participants rated symptom severity and bothersomeness using numerical rating scales (0=not at all to 10=extremely) and described worst symptoms and impacts.
Results: Participants reported 39 signs/symptoms, 23 functional impacts, and 17 emotional difficulties of PDT. While most participants (70%) reported some variation in their daily tremor experience, hand tremor was reported by all with high severity (7.1/10) and bothersome (6.9/10) ratings. Tremors in the hands (100%), lack of body control (25%), rigidity (25%), balance problems (20%), and arm tremor (20%) were some of the most frequently-reported worst symptoms. The most reported impacts were related to hand mobility (100%) and emotional difficulties (95%). The most reported hand mobility impact was difficulty writing (n=15/20, 75%) and the most frequently reported emotional difficulties included feeling anxious (70%), nervous in social settings (70%), annoyed (70%), and embarrassed (70%). Difficulty with mobility (47%) was most reported as one of the worst impacts.
Conclusion: A new CDM describes the humanistic burden of PDT by identifying symptoms and impacts that are most relevant from the patient perspective, and identifies unmet treatment needs that are most important to patients.
Short Description: Results from concept-focused qualitative research (literature review, clinician interviews, and patient interviews) describe signs, symptoms, and impacts that are important and relevant to patients with Parkinson's Disease Tremor (PDT) and yield a comprehensive conceptual disease model for PDT.
Name of Sponsoring Organization(s): Jazz Pharmaceuticals
