Comparison of the EQ-5D-5L and the patient-reported outcomes measurement information system preference score (PROPr) in the United States.

Background: In contrast to prior research, our study presents longitudinal comparisons of the EQ-5D-5L and Patient-Reported Outcomes Measurement Information System (PROMIS) preference (PROPr) scores. This fills a gap in the literature, providing a much-needed understanding of these preference-based measures and their applications in healthcare research. Furthermore, our study provides equations to estimate one measure from the other, a tool that can significantly facilitate comparisons across studies.

Derivation and Initial Validation of the Utility Function for the Hearing Utility Measure (HUM).

Objective: The Hearing Utility Measure (HUM) is a replacement hearing attribute for the Health Utilities Index, Mark 3 (HUI-3) designed to improve the responsiveness of utility estimates to changes in hearing-related quality of life. The final development step is to derive the instrument's utility scoring function.

Methods: Residents of Ontario, Canada, aged ≥18 years participated in standard gamble and visual analogue scale exercises.

"You Take This Day by Day, Come What May": A Qualitative Study of the Psychosocial Impacts of Living with Duchenne Muscular Dystrophy.

Introduction: Studies have reported health-related quality-of-life impacts of Duchenne muscular dystrophy (DMD); however, further research is needed to understand how those with DMD experience their condition and how psychosocial impacts evolve over time in response to disease progression. This qualitative study explores the social and emotional implications of key transitions, challenges and adaptations throughout the disease course from the perspective of patients and family caregivers.

Methods: Semi-structured interviews were conducted with men and boys with DMD, and/or their caregivers, in the USA.

Comparing Preferences for Disease Profiles: A Discrete Choice Experiment from a US Societal Perspective.

Objectives: There is increasing interest in expanding the elements of value to be considered when making health policy decisions. To help inform value frameworks, this study quantified preferences for disease attributes in a general public sample and examined which combination of attributes (disease profiles) are considered most important for research and treatment.

Methods: A discrete choice experiment (DCE) was conducted in a US general population sample, recruited through online consumer panels.

Estimating health state utilities in Duchenne muscular dystrophy using the health utilities index and EQ-5D-5L.

Background: The progression of Duchenne muscular dystrophy (DMD) is characterized by loss of ambulation, respiratory insufficiency, cardiomyopathy, and early mortality. DMD profoundly impacts health-related quality-of-life (HRQoL). However, few health state utility data exist; published utilities tend to be derived from small samples for a limited number of health states and are often based on caregiver-reported patient health status.