Methods for Prioritizing Surrogate Desired Health Outcomes for Patients [Methods Study], Washington, DC and Maryland, 2013-2018 (ICPSR 39516)

Version Date: Oct 20, 2025

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Principal Investigator(s):
Susan dosReis, University of Maryland, Baltimore

https://doi.org/10.3886/ICPSR39516.v1

Version V1

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Summary

Children with intellectual and cognitive disabilities often have problems with reasoning, learning, and problem solving. With such challenges, caregivers may have to make choices for their children about their health care and treatments. These children may need such help into young adulthood.

In this study, the research team wanted to find out what matters most to caregivers about their children's care. Caregivers had children with an intellectual or cognitive disability plus a mental health condition, such as depression or anxiety. The team interviewed caregivers about their preferences. Then the team used this information to design a survey. A larger group of caregivers filled out the survey.

Citation

dosReis, Susan. Methods for Prioritizing Surrogate Desired Health Outcomes for Patients [Methods Study], Washington, DC and Maryland, 2013-2018. Inter-university Consortium for Political and Social Research [distributor], 2025-10-20. https://doi.org/10.3886/ICPSR39516.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1306-01511)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2013 -- 2018
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Study Purpose

The objectives were to (1) elicit surrogate-defined meaningful outcomes for their child with developmental impairment and a coexisting psychiatric disorder, (2) identify the priorities for outcomes for English- and Spanish-speaking surrogates, and (3) apply valid and reliable approaches for generating meaningful evidence to inform surrogate decision-making.

Study Design

The research team used a mixed-methods approach to identify patient-centered outcomes of greatest importance to caregivers when making decisions about medication treatment and care management for their children with intellectual and cognitive disabilities and a mental illness.

In the first part of the study, the research team held interviews and focus groups with 58 caregivers of children age 26 or younger to identify meaningful treatment outcomes.

The research team used the results of the interviews and focus groups to develop a survey. The team designed the survey as a discrete choice experiment and a conjoint analysis. Caregivers selected a preferred care management profile from three shown. The 18 questions displayed different profile options by varying the combination of management options. The team used a best-worst scaling experiment to elicit from caregivers the most important outcomes from their child's medication treatment.

The research team gave the online survey to 413 caregivers. Of these, 71% were a child's mother, 22% were a child's father, and 6% were another relation. In addition, 56% were white, 24% were Hispanic, 13% were black, 4% were Asian, and 3% were another race. Also, 32% made more than $75,000 per year, 75% had at least a college degree, and 80% were married.

Eight staff members from advocacy groups and support groups helped the research team with outreach and participant recruitment. Four caregivers of children with intellectual or cognitive disabilities and a mental health condition helped with research activities, such as data collection. Two state administrators provided advice during the study.

Universe

Hispanic participants from communities in Maryland and Washington DC

Data Source

Interviews, focus groups, and pilot and field tests of a survey with caregivers of children with intellectual and cognitive disabilities and a mental illness diagnosis

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Original Release Date

2025-10-20

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Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

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This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).