Year: 2024
Type: conference-abstract
Abstract: Objectives To evaluate the psychometric properties of the 12-item, short-form health survey (SF-12) in Huntington’s disease (HD). Background Health-related, quality-of-life patient-reported outcome (HRQoL PRO) measures assess aspects of daily functioning and well-being and are often used to evaluate disease progression, and treatment response, and guide treatment decision-making. HRQOL PROs such as the SF-12 and EQ-5D have been widely used in neurodegenerative studies. These measures have been criticized for their lack of specificity and sensitivity to change in HD, but the psychometric properties of the SF-12 have not yet been evaluated in HD. Methods We analyzed data from the Enroll-HD, longitudinal observational study (N =18,102) using the HD Integrated Staging System (HD-ISS) for HD progression classification. Internal consistency, floor and ceiling effects, and concurrent validity of the SF-12 were assessed. Results Acceptability of the scale was good. Ceiling effects were apparent for HD-ISS Stages 0-2 for multiple items, but no ceiling effects were observed in HD-ISS Stage 3 for any items. Internal consistency was very good (α=0.91). Concurrent validity was good; the SF-12 PCS moderately correlated with Total Motor Score (TMS), Symbol Digit Modality Test (SDMT), and Total Functional Capacity (TFC), with Pearson’s values ranging between 0.50 and 0.59. SF-12 PCS correlations with apathy, anxiety, and depression scores, as assessed by the Problem Behaviors Assessment (PBA) and Hospital Anxiety and Depression Scale (HADS), were weaker with values ranging between 0.11 and 0.40, and indicative of good discriminant validity. Conclusion The SF-12v2 is a psychometrically sound measure for evaluating quality of life and well-being in HD.
Authors: Jamie Hamilton, James Mills, Glenn Stebbins, Rebecca Fuller, Jeffrey Long, Swati Sathe, Cristina Sampaio
Institutions: University of Iowa, Rush University Medical Center
Language: English
Subfield: Economics and Econometrics
Domain: Social Sciences
Open Access status: gold
OpenAlex ID: W4402374853