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.

Exploring the relationship between North Star Ambulatory Assessment and Health Utilities Index scores in Duchenne muscular dystrophy.

Background: The North Star Ambulatory Assessment (NSAA) documents motor performance in ambulatory individuals with Duchenne muscular dystrophy (DMD). Health Utilities Index (HUI) scores, reflecting preferences for health-related quality-of-life (HRQoL) implications of health states, are commonly estimated within trials. This study sought to characterize the relationship between the NSAA score and utility in DMD.

Health Utilities Index Mark 3 scores for children and youth: Population norms for Canada based on cycles 5 (2016 and 2017) and 6 (2018 and 2019) of the Canadian Health Measures Survey.

Background: Utility scores are an important tool for evaluating health-related quality of life. Utility score norms have been published for Canadian adults, but no nationally representative utility score norms are available for children and youth.

Data And Methods: Health Utilities Index Mark 3 (HUI3) data from two recent cycles of the Canadian Health Measures Survey (i.

Improving the Hearing Status Discrimination of the Health Utilities Index, Mark 3: Design of the Hearing Status Classification System.

Objective: Redesign the health status classification system of the Health Utilities Index, Mark 3 (HUI-3) "hearing" attribute to improve its discrimination of hearing-impaired health states.

Study Design: Domain and item selection from a previously generated item set guided by a domain and item importance survey, structural independence, and cognitive interviews with patients.

Setting: Tertiary referral center.

Generic Health-Related Quality of Life Utility Measure for Preschool Children (Health Utilities Preschool): Design, Development, and Properties.

Objectives: Health Utilities Preschool (HuPS) was developed to fill the need for a generic preference-based measure (GPM) applicable in early childhood. A GPM has all the properties for higher-order summary measures, such as quality-adjusted life-years, required to inform important policy decisions regarding health and healthcare services.

Methods: Development was in accordance with published standards for a GPM, statistical procedures, and modeling.

Factors associated with the health-related quality of life among people with Duchenne muscular dystrophy: a study using the Health Utilities Index (HUI).

Background: Data on health state utility in Duchenne muscular dystrophy (DMD) are few. This study estimated mean utility values by age, ambulatory status and over time, and investigated which aspects of health-related quality-of-life (HRQoL) are most strongly associated with utility in DMD.

Methods: Data from placebo-treated ambulant boys with DMD with exon 51 skip amenable mutations, (NCT01254019), were included.

Societal perspectives on disease and treatment attributes characterizing rare diseases: a qualitative study from the United States.

Purpose: Under a societal perspective, disease and treatment attributes that the general public deem important should be considered within value frameworks. The objective was to investigate how members of the general public value attributes beyond health gains and healthcare system expenditures; and better understand their perspectives regarding the importance of attributes typically characterizing rare genetic diseases like Duchenne muscular dystrophy (DMD).

Methods: Qualitative interviews were conducted to elicit feedback on the importance of disease and treatment attributes from general public participants from three US cities.

Correction: Associations between continuity of primary and specialty physician care and use of hospital-based care among community-dwelling older adults with complex care needs.

[This corrects the article DOI: 10.1371/journal.pone.

Construct Validity of the Health Utilities Index Mark 2 and Mark 3 to Measure Health-Related Quality of Life of Residents in Long-Term Care Facilities.

Background And Purpose: The purpose is to evaluate the construct validity of two generic health measures, the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) in residents of long-term care (LTC) facilities, using a convergent/divergent validity approach, with the Functional Independence Measure (FIM), Quality of Life-Alzheimer's Disease (QOL-AD) and Resident Assessment Instrument (RAI) 2.0 as comparators.

Methods: Health status of 130 residents with dementia residing in one of seven LTC facilities was evaluated by their Healthcare Aides who were their primary care assistants.

Parent-reported health status of preterm survivors in a Canadian cohort.

Objectives: Health status (HS)/ health-related quality of life measures, completed by self or proxy, are important outcome indicators. Most HS literature on children born preterm includes adolescents and adults with limited data at preschool age. This study aimed to describe parent-reported HS in a large national cohort of extreme preterm children at preschool age and to identify clinical and sociodemographic variables associated with HS.

Effect of Access to After-Hours Primary Care on the Association Between Home Nursing Visits and Same-Day Emergency Department Use.

Purpose: Previous work has demonstrated that home care patients have an increased risk of visiting the emergency department after a home nursing visit on the same day. We investigated whether this association is modified by greater access to after-hours primary care.

Methods: We conducted a population-based case-crossover study of home care patients in Ontario, Canada in 2014-2016.

Physician Home Visit Patterns and Hospital Use Among Older Adults with Functional Impairments.

Background: Home-based primary care has been associated with reductions in hospital use among homebound older adults, but population-based studies on the general home visit patterns of primary care physicians are lacking.

Objective: We examined the association between the provision of home visits by primary care physicians and subsequent use of hospital-based care among their older adult patients with extensive functional impairments.

Design: Population-based retrospective cohort study.

Associations between continuity of primary and specialty physician care and use of hospital-based care among community-dwelling older adults with complex care needs.

Objective: While research suggests that higher continuity of primary and specialty physician care can improve patient outcomes, their effects have rarely been examined and compared concurrently. We investigated associations between continuity of primary and specialty physician care and emergency department visits and hospital admissions among community-dwelling older adults with complex care needs.

Methods: We conducted a retrospective cohort study of home care patients in Ontario, Canada, from October 2014 to September 2016.

Health-Related Quality of Life Changes Associated With Hearing Loss.

Importance: Utility is a single-value, preference-based measure of health-related quality of life that represents the desirability of a health state relative to being dead or in perfect health. Clinical, funding, and policy decisions rely on measured changes in utility. The benefit of hearing loss treatments may be underestimated because existing utility measures fail to capture important changes in quality of life associated with hearing loss.

DIVERT-Collaboration Action Research and Evaluation (CARE) Trial Protocol: a multiprovincial pragmatic cluster randomised trial of cardiorespiratory management in home care.

Introduction: Home care clients are increasingly medically complex, have limited access to effective chronic disease management and have very high emergency department (ED) visitation rates. There is a need for more appropriate and targeted supportive chronic disease management for home care clients. We aim to evaluate the effectiveness and preliminary cost effectiveness of a targeted, person-centred cardiorespiratory management model.

Characterizing health state utilities associated with Duchenne muscular dystrophy: a systematic review.

Background: Preferences for health states for Duchenne muscular dystrophy (DMD) are necessary to assess costs and benefits of novel therapies. Because DMD progression begins in childhood, the impact of DMD on health-related quality-of-life (HRQoL) affects preferences of both DMD patients and their families. The objective of this review was to synthesize published evidence for health state utility from the DMD patient and caregiver perspectives.

Feasibility and implementation of a healthy lifestyles program in a community setting in Ontario, Canada: protocol for a pragmatic mixed methods pilot study.

Introduction: Rates of chronic conditions, such as diabetes, cardiovascular disease and obesity are increasing in Canada and internationally. There are effective lifestyle interventions that are known to improve chronic conditions. However, there is often a gap in 'how to' make lifestyle changes.

Commentary. In Praise of Studies That Use More Than One Generic Preference-Based Measure.

Objectives And Background: Generic preference-based (GPB) measures of health-related quality of life (HRQL) are widely used as outcome measures in cost-effectiveness and cost-utility analyses (CEA, CUA). Health technology assessment agencies favor GPB measures because they facilitate comparisons among conditions and because the scoring functions for these measures are based on community preferences. However, there is no gold standard HRQL measure, scores generated by GPB measures may differ importantly, and changes in scores may fail to detect important changes in HRQL.

Comparison of health state utility estimates from instrument-based and vignette-based methods: a case study in kidney disease.

Objective: We take advantage of a rare occurrence when two different studies report on the estimation of quality of life utilities for the same health states to assess convergence of the reported measures. Health state utilities are important inputs into health economic models that estimate the impact of new medical technologies using a common metric of health gain-the quality adjusted life-year.

Results: We find low concordance between the two measures which is concerning in that this could have important ramifications for health care decision making based on estimated cost-effectiveness.