Poster
164
(#164) A Conceptual Disease Model Characterizing the Patient Experience of Essential Tremor
Psych Congress 2025
Abstract: Introduction: A conceptual disease model (CDM) was developed using qualitative research methodology exploring the most relevant signs/symptoms and impacts from the perspective of patients living with essential tremor (ET).
Methods: Adult participants (n=20) each completed a 60-minute web-based concept elicitation (CE) interview describing their experience with ET. A semi-structured interview guide was used, which included open-ended and probing questions informed by a targeted conceptual literature review and interviews with expert clinicians (n=5). Participants rated symptom severity and bothersomeness using numerical rating scales (0=not at all - 10=extremely) and described worst symptoms and impacts.
Results: Participants reported 23 signs/symptoms, 28 impacts, and 24 emotional difficulties. Hand tremor was reported by all participants with high severity (8.6/10) and bothersomeness (9.0/10) ratings. Other reported symptoms (≥50%) with high bothersome ratings (≥5/10) included feeling jittery (80%, 5.1/10), muscle pain (65%, 7.0/10), feeling feeble (60%, 6.6/10), physical exhaustion (60%, 6.1/10), difficulty focusing (65%, 6.6/10), and memory difficulty (60%, 6.2/10). All reported at least one impact related to hand function and emotional difficulties. 95% reported impacts related to other mobility issues. The most frequently reported impact related to hand function issues was difficulty writing/drawing (95%). The most reported emotional impacts included feeling embarrassed (90%) and frustrated (90%). The most reported impact from other mobility issues was difficulty with job performance/work duties (60%).
Conclusion: A new CDM informed by a targeted literature review and direct input from clinicians and patients describes the humanistic burden of ET and identifies treatment needs that are important from the patient perspective.
Short Description: Results from concept-focused qualitative research (literature review, clinician interviews, and patient interviews) characterize the important and relevant signs, symptoms, and impacts of Essential Tremor (ET) from the patient perspective, yielding a comprehensive conceptual disease model for ET.
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 ET. A semi-structured interview guide was used, which included open-ended and probing questions informed by a targeted conceptual literature review and interviews with expert clinicians (n=5). Participants rated symptom severity and bothersomeness using numerical rating scales (0=not at all - 10=extremely) and described worst symptoms and impacts.
Results: Participants reported 23 signs/symptoms, 28 impacts, and 24 emotional difficulties. Hand tremor was reported by all participants with high severity (8.6/10) and bothersomeness (9.0/10) ratings. Other reported symptoms (≥50%) with high bothersome ratings (≥5/10) included feeling jittery (80%, 5.1/10), muscle pain (65%, 7.0/10), feeling feeble (60%, 6.6/10), physical exhaustion (60%, 6.1/10), difficulty focusing (65%, 6.6/10), and memory difficulty (60%, 6.2/10). All reported at least one impact related to hand function and emotional difficulties. 95% reported impacts related to other mobility issues. The most frequently reported impact related to hand function issues was difficulty writing/drawing (95%). The most reported emotional impacts included feeling embarrassed (90%) and frustrated (90%). The most reported impact from other mobility issues was difficulty with job performance/work duties (60%).
Conclusion: A new CDM informed by a targeted literature review and direct input from clinicians and patients describes the humanistic burden of ET and identifies treatment needs that are important from the patient perspective.
Short Description: Results from concept-focused qualitative research (literature review, clinician interviews, and patient interviews) characterize the important and relevant signs, symptoms, and impacts of Essential Tremor (ET) from the patient perspective, yielding a comprehensive conceptual disease model for ET.
Name of Sponsoring Organization(s): Jazz Pharmaceuticals
