2001 IETF awards a $20,000 grant to study quality of life in ET
The IETF funded this study, Quality of Life in Essential Tremor (QUEST), which quantifies and measures disabilities and quality of life issues associated with ET.
In the initial phase, more than 200 people with ET answered 65 questions in the QUEST assessment. Their responses led them to the next section of the assessment, which contained 35 questions about everyday life including physical activities, emotional issues, communication, hobbies, and work-related issues.
Findings of this research were presented at the Eighth International Congress of Parkinson's Disease and Movement Disorders, Rome, Italy, June 14-17, 2004.
Validation of the Quality of Life in Essential Tremor Questionnaire (QUEST)
A. Troster, R. Pawha, C. M. Tanner, K.E. Lyons
P1185 page S405
Essential tremor (ET), often thought benign, can diminish functioning and quality of life. Functioning may also be disrupted in ET due to fear of embarrassment in social situations, anxiety and depression. QUEST was developed as a “disease-specific” QOL measure for ET. This 30-item questionnaire yields scores in five specific domains (Physical, Psychosocial, Communication, Hobbies/Leisure, Work/Finances) and an overall Summary Index.
Sixty-five persons with ET and showing no other neurological and psychiatric illness were assessed using the Fahn-Tolosa-Marin Tremor Rating Scale (TRS), the Quality of Life in Essential Tremor Questionnaire (QUEST), Parkinson's Disease Questionnaire (PDQ-39) and Beck Depression Inventory (BDI).
The QUEST demonstrated good validity given its sensitivity to overall severity of both self-rated and physician-rated tremor. The expected relationships between specific quality of life domains and body part affected by tremor hold much more strongly for patient than physician-rated tremor severity. Work/Finance scores on the QUEST appear more strongly related to psychosocial factors such as stigma, social support, and depression than physical aspects of tremor. The QUEST generally demonstrates expected relationships with an independent QOL scale (PDQ), suggesting good convergent construct validity.
There is minimal if any relationship between duration of tremor and quality of life in ET. The QUEST appears to be a valid measure of quality of life in ET and correlates well with physician ratings of tremor.