Commentary
Determining Economic Factors That Matter to People With Intellectual and Developmental Disabilities and Their Caregivers: A Process Framework
Bibliographic Data
BACKGROUND: The 2020-2029 strategic plan for the Patient-Centered Outcomes Research Trust Fund calls for addressing data infrastructure gaps that are critical for studying issues around intellectual and developmental disabilities (I/DD). Specifically, the plan calls for data collection on economic factors that affect person-centered approaches to health care decision-making. Among people with I/DD and their caregivers, such economic factors may include financial costs of care, decreased opportunities for leisure and recreation, income losses associated with caregiving, and foregone opportunities for skill acquisition or other human capital investments. OBJECTIVE: This commentary supports responsiveness to the Patient-Centered OutcomesResearch Trust Fund (PCORTF) calls by conceptualizing and operationalizing a framework for identifying preferences on economic factors that are relevant to people with I/DD and their caregivers. MAIN ARGUMENTS: The framework outlined in this commentary addresses barriers to data collection that hinder measure development in the study of I/DD. This work is significant and timely given the continued movement to integrate and maintain people with I/DD within communities and recent methodological advances for eliciting preferences among people with I/DD. RELEVANCE TO THE SPECIAL ISSUE: Readers will be introduced to a framework for building data capacity in the study of economic outcomes among a population that is a high research priority for federal funding agencies. This commentary aims to be useful to researchers in planning, developing, and initiating projects in this area
Business · Data collection · Economic growth · Economics · Health care · Operationalization · Plan (archaeology) · Political science · Population · Public economics · Public relations · Recreation · Relevance (law) · Sociology · Work (physics) · Down syndrome and intellectual disability research · Health Systems, Economic Evaluations, Quality of Life · Healthcare innovation and challenges · Psychology
An Overview of Intellectual Disability
Perspectives on quality of life of people with intellectual disabilities
Understanding the use of non-compensatory decision rules in discrete choice experiments
Persons With Disabilities as an Unrecognized Health Disparity Population
Research Synthesis
Successful interviews with people with intellectual disability
Dyadic interviewing
| Citations per year | 0.67 |
|---|---|
| Citation span | 2023 - 2026 (4) |
| Highly cited | No |