Tremor Symptoms and Associated Activities of Daily Living Impacts in Essential Tremor: A Qualitative Concept Elicitation and Mapping Study
Author(s)
Elizabeth Exall, MSc1, Ginny Shand, MSc1, Margaret Gerbasi, PhD2, Sarah Acaster, MSc1;
1Acaster Lloyd Consulting, London, United Kingdom, 2Sage Therapeutics, Inc., Cambridge, MA, USA
1Acaster Lloyd Consulting, London, United Kingdom, 2Sage Therapeutics, Inc., Cambridge, MA, USA
Presentation Documents
OBJECTIVES: To explore tremor symptoms and related impacts on activities of daily living (ADL) experienced by individuals with essential tremor (ET) and evaluate the conceptual coverage of two novel patient-reported outcome measures in ET: the Patient Attainment Scale (PAS-ET) and Most Bothersome Symptom Questionnaire (MBS-ET).
METHODS: Semi-structured concept elicitation interviews were conducted with adult ET patients in the US. Recruitment targets were used to ensure a range of ages and severity levels (patient-reported severity of tremor-related ADL impacts) were reflected in the sample. Interviews were analysed using thematic and content analysis methods. Conceptual saturation was monitored and documented in a matrix. Identified concepts were mapped onto the PAS-ET and MBS-ET.
RESULTS: Sixteen participants completed an interview; conceptual saturation on ADL concepts and all recruitment targets were met within the sample. Participants (mean age 66.13 years, 63% male) all reported experiencing upper limb tremor. Other tremor symptoms included lower limb (n=7), head, (n=3) and voice tremor (n=1). External factors impacting tremor included stress, temperature and fatigue. Difficulty with fine-motor tasks was the most frequently reported tremor-related ADL impact (n=13), including difficulty with handwriting, using a touchscreen, painting/crafting, carrying objects, using tools, using a keyboard, picking up objects, pouring, and using keys. Other tremor-related ADL impacts included difficulty with self-care activities (n=7), eating (n=7), drinking (n=6), cooking (n=5) and work/housework (n=5). Participants also spontaneously reported tremor-related impacts on wider quality of life, including leisure activities (n=7) and emotional functioning (n=6). With the exception of three specific fine-motor and two ADL tasks that were reported by n≤3 participants, the PAS-ET and MBS-ET include items to assess all relevant concepts reported in interviews.
CONCLUSIONS: This study documents the tremor symptoms and related ADL impacts experienced by ET patients. The findings support the conceptual comprehensiveness of the PAS-ET and MBS-ET in adult ET patients.
METHODS: Semi-structured concept elicitation interviews were conducted with adult ET patients in the US. Recruitment targets were used to ensure a range of ages and severity levels (patient-reported severity of tremor-related ADL impacts) were reflected in the sample. Interviews were analysed using thematic and content analysis methods. Conceptual saturation was monitored and documented in a matrix. Identified concepts were mapped onto the PAS-ET and MBS-ET.
RESULTS: Sixteen participants completed an interview; conceptual saturation on ADL concepts and all recruitment targets were met within the sample. Participants (mean age 66.13 years, 63% male) all reported experiencing upper limb tremor. Other tremor symptoms included lower limb (n=7), head, (n=3) and voice tremor (n=1). External factors impacting tremor included stress, temperature and fatigue. Difficulty with fine-motor tasks was the most frequently reported tremor-related ADL impact (n=13), including difficulty with handwriting, using a touchscreen, painting/crafting, carrying objects, using tools, using a keyboard, picking up objects, pouring, and using keys. Other tremor-related ADL impacts included difficulty with self-care activities (n=7), eating (n=7), drinking (n=6), cooking (n=5) and work/housework (n=5). Participants also spontaneously reported tremor-related impacts on wider quality of life, including leisure activities (n=7) and emotional functioning (n=6). With the exception of three specific fine-motor and two ADL tasks that were reported by n≤3 participants, the PAS-ET and MBS-ET include items to assess all relevant concepts reported in interviews.
CONCLUSIONS: This study documents the tremor symptoms and related ADL impacts experienced by ET patients. The findings support the conceptual comprehensiveness of the PAS-ET and MBS-ET in adult ET patients.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR166
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Neurological Disorders