Feinstein Institutes Awarded $5.6M to Study Future Planning, Pediatric Caregiver Well-Being

The Patient-Centered Outcomes Research Institute award will help researchers study future planning for caregivers of people with intellectual/developmental disabilities

MANHASSET, N.Y.--(BUSINESS WIRE)--There are more than 6.5 million people with an intellectual or developmental disability in the United States. Planning for the future and emergency preparedness for families caring for a loved one with a disability often contributes to caregivers' burden. In an effort to study new methods to ease that stress and increase pediatric caregiver well-being, researchers at Cohen Children’s Medical Center and The Feinstein Institutes for Medical Research, the home of the research institutes at Northwell Health, have been approved for a $5.6 million research funding award by the Patient-Centered Outcomes Research Institute (PCORI).

The research team, led by co-principal investigator Sophia Jan, MD, MSHP, chief of general pediatrics at Cohen Children’s and co-principal investigator Caren Steinway, LMSW, MPH, director of clinical research in the division of general pediatrics at Cohen Children’s, will work with co-principal investigator Charmaine Wright, MD, MSHP, director of the Center for Special Health Care Needs at ChristianaCare, DE, as well as the Children’s Hospital of Philadelphia, PA, Geisinger Health, PA, Cincinnati Children’s Hospital Medical Center, OH, and Baylor College of Medicine, TX. The group aims to enroll 1,050 family caregivers of people with intellectual or developmental disabilities.

“A caregiver for a person with an intellectual or developmental disability is faced with daily challenges, including planning for the future,” said Dr. Jan. “With this generous award from PCORI, we hope to ease that by identifying new methods of care planning that will give them peace of mind.”

Once enrolled, the family caregivers will be assigned to one of two groups. The first will have access to a novel online planning tool and regular care coordination with their state or county disability services provider. The other group will receive regular care coordination with their state or county disability services provider and will be asked to review online modules unrelated to future planning. The research team will compare changes in family caregiver burden and well-being for 18 months.

“It is important that researchers and clinicians continue to investigate new ways to better improve the quality of life and care for people with intellectual and developmental disabilities,” said Charles L. Schleien, MD, senior vice president and chair of pediatric services at Northwell Health and professor in the Institute of Molecular Medicine at the Feinstein Institutes. “This PCORI award and study led by Dr. Jan and Ms. Steinway will help inform caregivers and providers on how to help these families plan for the future.”

The study was selected for the PCORI award through a review process in which patients, caregivers and other stakeholders joined scientists to evaluate the proposals. The award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

Once complete, the research team will work in tandem with advocacy organizations, individuals with intellectual disability and their caregivers, organizations providing direct services to individuals with intellectual disability, professional organizations and other groups focused on policy change to help disseminate the findings and put them into practice.

About the Feinstein Institutes

The Feinstein Institutes for Medical Research is the home of the research institutes of Northwell Health, the largest health care provider and private employer in New York State. Encompassing 50 research labs, 3,000 clinical research studies and 5,000 researchers and staff, the Feinstein Institutes raises the standard of medical innovation through its five institutes of behavioral science, bioelectronic medicine, cancer, health system science, and molecular medicine. We make breakthroughs in genetics, oncology, brain research, mental health, autoimmunity, and are the global scientific leader in bioelectronic medicine – a new field of science that has the potential to revolutionize medicine. For more information about how we produce knowledge to cure disease, visit http://feinstein.northwell.edu and follow us on LinkedIn.