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. 2023 Dec 1;61(12 Suppl 2):S104-S108.
doi: 10.1097/MLR.0000000000001913. Epub 2023 Nov 9.

Commentary: Determining Economic Factors That Matter to People With Intellectual and Developmental Disabilities and Their Caregivers: A Process Framework

John S Palatucci  1   2 , Sujoy Chakravarty  1 , Amy L Kratchman  3 , Jill Harris  4 , Laura T Pizzi  5   6 , Caroline N Coffield  2   7 , Grace Ibitamuno  7 , Deborah M Spitalnik  2   7
Affiliations

Commentary: Determining Economic Factors That Matter to People With Intellectual and Developmental Disabilities and Their Caregivers: A Process Framework

John S Palatucci et al. Med Care. .

Abstract

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.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

FIGURE 1
FIGURE 1
Example of a Best-Worst Scaling “Choice Set” (Survey Item). Presents a set of economic outcomes for eliciting preferences on economic factors relevant to people with intellectual and developmental disabilities and caregivers.
FIGURE 2
FIGURE 2
Process framework for determining economic factors that matter. Presents 7 steps for incorporating knowledge about the gaps, problems, and potential solutions for determining relevant economic factors to health care decision-making among people with intellectual and developmental disabilities (I/DD) and caregivers. The figure also includes strategies for applying findings to health care and policy evaluative studies. BWS indicates Best-Worst Scaling.
See this image and copyright information in PMC

References

    1. US Department of Health and Human Services. Building Data Capacity for Patient-Centered Outcomes Research. Office of the Secretary Patient Centered Outcomes Research Trust Fund Strategic Plan: 2020–2029. Office of the Assistant Secretary for Planning and Evaluation; September 2022. Accessed July 31, 2023. https://aspe.hhs.gov/os-pcortf-strategic-plan-2020-2029 . - PubMed
    1. Larson SA van der Salm B Pettingell S, et al. Long-term supports and services for persons with intellectual or developmental disabilities: status and trends through 2018. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration; 2021. Accessed January 20, 2023. https://ici.umn.edu/products/cl18yk4BSoqLOobImp0U9A .
    1. Schalock RL Luckasson R, & Tassé MJ. Intellectual disability: definition, diagnosis, classification, and systems of supports. 12th ed. American Association on Intellectual and Developmental Disabilities; 2021. - PubMed
    1. Feldman MA, Bosett J, Collet C, et al. Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. J Intellect Disabil Res. 2014;58:800–809. - PubMed
    1. Santoro SL, Donelan K, Constantine M. Proxy‐report in individuals with intellectual disability: a scoping review. J Appl Res Intellect Disabil. 2022;35:1088–1108. - PMC - PubMed

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