Introduction to HDQLIFE
HDQLIFE™ is a set of self-report measures within the Neuro-QoL™ measurement system that assesses the health-related quality of life (HRQOL) of adults with Huntington disease (HD). The HDQLIFE measures were developed through a collaborative, multi-site NIH-sponsored research project to construct a psychometrically-sound and clinically-relevant health-related quality of life measurement tool for individuals with HD. HDQLIFE is comprised of item banks and scales that evaluate symptoms and concerns important to those with HD. The HDQLIFE measures are intended for use in both clinical trials and clinical practice.
Why Use HDQLIFE?
- Designed to be brief, specific, and sensitive in individuals with Huntington disease (HD) from premanifest to late stage
- Developed to assess new domains not currently covered by existing measures for HD
- Created using input from individuals with HD, caregivers, researchers and clinicians
- Available in short forms or computer adaptive tests (CATs) and easily integrated into diverse data collection tools
Who uses HDQLIFE?
Anyone interested in measuring the self-reported health and well-being of adults with HD, including health care providers and researchers.
The HDQLIFE measurement system consists of measures that cover 5 HD-specific domains, as well as 12 generic domains through the Neuro-QoL and PROMIS systems.