Results Summary

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Understanding what matters to patients, family members, healthcare professionals, and other stakeholders helps researchers know what topics to focus on.

Two ways to ask patients and stakeholders about research needs are direct prioritization and best-worst scaling. In direct prioritization, participants put a list of research needs in order from most to least important. In best-worse scaling, researchers ask participants to decide between sets of research needs from a list. For each set, people choose the most important and least important research need. This method allows researchers to see whether the importance of each item changes depending on what other choices are available.

Project Purpose

This study compared direct prioritization to best-worst scaling to find out the research needs of people who are affected by autism or who do work related to autism.

Methods

The research team looked at publications by autism advocacy organizations and the federal government. The team also talked to 17 patients with autism, caregivers of patients with autism, healthcare professionals, and researchers. The research team used what they learned to make a list of topics for future autism research.

Two hundred nineteen patients with autism, caregivers, healthcare professionals, and researchers took an online survey about the research topics. The participants used either direct prioritization or best-worst scaling to choose the research topics that were most important to them. For the best-worst scaling surveys, participants were given different research scenarios and asked to select their most and least favorite part. For the direct prioritization surveys, respondents were given the list of research topics and asked to select a limited number as most important.

Researchers looked at whether there were differences in priorities depending on which method was used. The researchers also looked at what participants valued, and whether people with different characteristics gave different answers.

Findings

Both methods identified the same top priority for future autism research: learning what characteristics of children, families, and therapies lead to better or worse outcomes. The two methods produced different answers about lower research priorities.

Participants in the study had similar values when it came to deciding why a research topic was important. They cared about how many children with autism the research could help, how much a treatment cost, whether a treatment helped with multiple aspects of autism, and whether research focused on both the child and the child’s support system.

Study participants found the best-worst scaling method easier to understand than direct prioritization. People who used best-worst scaling were less likely to skip parts of the process. Different stakeholders came up with similar results more often using best-worst scaling than using direct prioritization.

Limitations

The research team found the study participants by asking people they knew at autism advocacy organizations or universities to participate. For this reason, the people in the study may have known more about autism research than the average patient or caregiver. The results might be different if people with more varied backgrounds were included.

Results might also be different if the research options included more information about the time and cost of doing research.

Importance of Findings

In the past, patients have not always been part of discussions about what to study, particularly in mental health. The best-worst scaling used in this study worked with people with autism and could be useful in other areas of mental health research.

Sharing the Results

The research team presented the study results at conferences. The researchers also wrote materials for patients, caregivers, advocates, other researchers, people who fund research, and people who work on policy about autism.

More to Explore...

Dissemination Activities

Through limited competition, PCORI awarded 25 of the 50 Pilot Projects up to $50,000 to support dissemination and implementation of their activities and findings through the PCORI Pilot Project Learning Network (PPPLN) funding. The deliverables listed below are a result of convenings and conferences supported by this funding, whose efforts align with the PCORI strategic goal of disseminating information and encouraging adoption of PCORI-funded research results.

Period: September 2015 to December 2015
Budget: $49,999

Presentations

"Stakeholder Priorities for Future Research in the Treatment of Childhood Autism: Findings from a PCORI Pilot Project"
AcademyHealth 2015 Annual Conference

"Stakeholder Priorities for Future Research in the Treatment of Childhood Autism: Significant Consensus Among Diverse Stakeholders"
2015 14th Annual International Conference on Health Economics

Journal Citations

Project Information

Kathleen C. Thomas, PhD, MPH, BA
University of North Carolina Chapel Hill, Cecil G. Sheps Center for Health Services Research
$692,735
An Approach to Capture Divergent Stakeholder Views on Future Research Needs

Key Dates

June 2012
December 2014
2012
2014

Study Registration Information

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State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022