SOP Researcher Receives Nearly $1 Million Funding Award from PCORI

Funding will support Dr. Susan dosReis’ research to examine methods of helping caregivers of children with developmental disabilities and a co-existing psychiatric illness make informed health care decisions.

By Malissa Carroll
January 15, 2014

Susan dosReis, BSPharm, PhD, associate professor in the Department of Pharmaceutical Health Services Research (PHSR) at the University of Maryland School of Pharmacy, has been approved for a research award of $937,812 by the Patient-Centered Outcomes Research Institute (PCORI) to support her study titled “Methods for Prioritizing Surrogate Desired Health Outcomes for Patients.” The study will investigate what outcomes are most important to caregivers when managing aggression in children with developmental disabilities and a co-existing psychiatric illness, helping them choose the best treatment option for their child’s unique circumstances.

“Research concerning the health outcomes that are most important to the caregivers who are responsible for a patient’s health care decisions is limited,” says dosReis. “One particular patient population about which we know very little is children with developmental disabilities and a co-existing psychiatric illness, including those with cognitive and social impairments and co-existing depression, attention-deficit/hyperactivity disorder, and autism spectrum disorders. It is my hope that the results of this study will transform future patient-centered outcomes research by establishing methods to surround caregivers with meaningful evidence that will help them make more informed health care decisions.”

The children included in this study’s patient population typically exhibit severe aggressive behavior. The medications used to manage this behavior are associated with a number of side effects that affect a child’s metabolism and increase his or her risk of becoming obese, as well as developing cardiovascular disease, later in life. Weighing the benefits and risks of these medications, caregivers are forced to make difficult decisions about how to best care for these children.

“The goal of this study is to use the information that we learn about caregivers’ preferred outcomes, such as helping their children establish skills for independent living, to advance methods that can assist them in deciding under what circumstances the level of risk associated with a particular treatment is acceptable, given the expected benefits also associated with that treatment,” says dosReis.

The study will include caregivers of children with developmental disabilities and a co-existing emotional or behavioral problem from across the United States. Researchers will collect caregivers’ feedback through small focus groups and innovative surveys designed to measure the value of benefit-risk trade-offs in treatment decisions. This information could provide improved evidence that supports which treatments work best to achieve the outcomes that matter most to caregivers and their patients.

“Dr. dosReis’ new research reinforces PHSR’s commitment to improving the health of diverse populations through health services and other drug-related research, education, service, and community outreach,” says C. Daniel Mullins, PhD, professor and interim chair of PHSR. “Her findings will help identify the needs of this particularly underserved population, and represent a pioneering effort in patient-centered outcomes research, which strives to provide patients and caregivers with the evidence they need to choose the best health care option for their unique circumstances.”

dosReis’ study was one of 82 proposals approved for PCORI funding on Dec. 17 to advance the field of patient-centered comparative effectiveness research and provide patients with information that will help them make better-informed decisions about their care. All proposed projects, including requested budgets, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.

“This project was selected for PCORI funding not only for its scientific merit and commitment to engaging patients and other stakeholders, but also for its potential to fill an important gap in our health knowledge and give people information to help them weigh the effectiveness of their care options,” says Joe Selby, MD, MPH, executive director of PCORI. “We look forward to following the study’s progress and working with the School of Pharmacy to share the results.”

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