Open AccessAssessment of Day-to-Day Functioning in Prodromal and Early Huntington Disease
Author(s) -
Anthony L. Vaccarino,
Terrence Sills,
Karen E. Anderson,
Jean Endicott,
Joseph Giuliano,
Mark Guttman,
Aileen K Ho,
Peter Kupchak,
Jane S. Paulsen,
John Harley Warner,
Janet K. Williams,
Ken Evans
Publication year - 2011
Publication title -
plos currents
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.282
H-Index - 49
ISSN - 2157-3999
DOI - 10.1371/currents.rrn1262
Subject(s) - huntington's disease , rating scale , multidisciplinary approach , disease , medicine , scale (ratio) , clinical psychology , psychology , developmental psychology , pathology , social science , physics , quantum mechanics , sociology
The Functional Rating Scale Taskforce for pre-Huntington Disease (FuRST-pHD) is a multinational, multidisciplinary initiative with the goal of developing a data-driven, comprehensive, psychometrically sound, rating scale for assessing symptoms and functional ability in prodromal and early Huntington disease (HD) gene expansion carriers. The process involves input from numerous sources to identify relevant symptom domains, including HD individuals, caregivers, and experts from a variety of fields, as well as knowledge gained from the analysis of data from ongoing large-scale studies in HD using existing clinical scales. This is an iterative process in which an ongoing series of field tests in prodromal (prHD) and early HD individuals provides the team with data on which to make decisions regarding which questions should undergo further development or testing and which should be excluded. We report here the development and assessment of the first iteration of interview questions aimed to assess functional impact in day-to-day activities in prHD and early HD individuals.