Commentary: Determining Economic Factors That Matter to People With Intellectual and Developmental Disabilities and...

Area of Science:

• Health Services Research
• Health Economics
• Disability Studies

Background:

• The Patient-Centered Outcomes Research Trust Fund (PCORTF) strategic plan highlights critical data infrastructure gaps in studying intellectual and developmental disabilities (I/DD).
• Data collection is needed on economic factors influencing healthcare decision-making for individuals with I/DD and their caregivers, including care costs, lost income, and foregone opportunities.
• These economic factors significantly impact person-centered approaches to healthcare for people with I/DD.

Purpose of the Study:

• To propose a framework for identifying and operationalizing economic factors relevant to people with I/DD and their caregivers.
• To support responsiveness to PCORTF calls for research on economic outcomes in I/DD.
• To enhance data capacity for studying economic factors in I/DD research.

Main Methods:

• Conceptualizing a framework for eliciting preferences on economic factors.
• Addressing barriers to data collection and measure development in I/DD research.
• Leveraging recent methodological advances for preference elicitation.

Main Results:

• The proposed framework aims to overcome data collection challenges in I/DD research.
• It facilitates the development of measures for economic outcomes relevant to I/DD.
• The framework is designed to be practical for researchers initiating projects in this area.

Conclusions:

• This work provides a timely framework for building data capacity in the study of economic outcomes for individuals with I/DD.
• The commentary is valuable for researchers planning and developing projects on economic factors affecting people with I/DD.
• Implementing this framework supports the integration and community maintenance of individuals with I/DD.