Center for Special Health Care Needs (Care of Young Adults with Chronic Conditions of Childhood Onset)
ChristianaCare is a leader in sickle cell research. Because the disease spans a lifetime, it requires a continuum of care. The Delaware Comprehensive Sickle Cell Research Center, one of the National Institutes of Health Centers of Biomedical Research Excellence (COBRE), was created to meet patients’ ongoing needs. ChristianaCare is a partner. In 2021 this Delaware Research Center received a $10.5 million COBRE grant for four projects, including research led by Stephanie Guarino, M.D., MSHP, clinical lead for the Sickle Cell Program at the Center for Special Health Care Needs. The current project is an extension of her 2019 pain-management survey of people with sickle cell anemia. The project aims to build a sickle-cell specific pain curriculum that is peer led, for and by patients with sickle cell. It will be a welcome and powerful addition to the non-pharmacologic ways we treat pain for our patients with sickle cell.
The Center for Special Health Care Needs is also a part of a national research group that studies caregiver stress. Many of our patients have families that are “perpetually parenting” their loved ones with special heath care needs. We were recently awarded a $7 million PCORI grant along with 5 other health systems across the country to enroll 1000 family caregivers of people with intellectual/developmental disability beginning January 2023. There are over 7 million people with an intellectual/developmental disability in the United States. People with intellectual/developmental disability are typically followed by many doctors, experience more frequent health problems, and earlier death than individuals without intellectual/developmental disability. This is especially true in times of emergency. The health and well-being of the family members caring for these individuals is very important, as it can impact the health of their family member with intellectual/developmental disability. However, family members caring for loved ones with intellectual/developmental disability frequently feel stressed and overwhelmed with their responsibilities. Planning for emergencies that may happen in the future can ease some of the stress caregivers feel and positively impact the health and well-being of people with intellectual/developmental disability and their family members. The PCORI grant will implement an RCT comparing use of an online planning tool to usual care. The team will compare changes in family caregiver burden and well-being, in addition to planning behaviors, communication about plans, and well-being of the person with intellectual/developmental disability. The Center for Special Health Care Needs will continue working with local and regional stakeholder groups including advocacy organizations, individuals with intellectual disability and their caregivers, organizations providing direct services to individuals with intellectual disability, professional organizations, and groups focused on actionable policy change and dissemination of findings on the project.
The Center for Special Health Care Needs at ChristianaCare is the only center in Delaware that focuses solely on adults with medically and socially complex conditions that originated in childhood. In addition to providing primary care (the largest group of patients and the largest need), there are specialized programs within the Center including programs specific to Cerebral Palsy, Cystic Fibrosis, Developmental Psychiatry, Down Syndrome, Gastroenterology, Hemophilia/Von Willebrand, Sickle Cell, Urology and Women’s Health. There are also clinics outside the Center but within ChristianaCare for patients with Congenital Heart Disease, HIV exposure or cochlear transplants. Every patient gets seen by a provider, social worker and care manager. We have four Med-Peds attendings that have a role in the Center.
Please hear about our program: Watch.
At Nemours Hospital for Children there is a consultative transition of care service and transition division to prepare patients and families to enter the adult health care system.
Our primary care transition program at ChristianaCare and transition of care service at Nemours has received national attention in the news media.
Our programs were featured in the Wall Street Journal (August 12, 2014).
The Challenges After Surviving a Childhood Disease – WSJ
Our Center for Special Healthcare Needs features med-peds physicians with medical director, Charmaine Wright, MD, MHSP (former University of Pennsylvania/Children’s Hospital of Philadelphia Med-Peds program director) and faculty Justin Eldridge, MD, FACP, FAAP (recipient of the 2024, 2023, and 2019 Outpatient Teacher of the Year from Internal Medicine Residency Program, the 2018 Outpatient Teacher of the Year from Family Medicine Residency and 2016 Outpatient Teacher of the Year from the Pediatric Residency program), Stephanie Guarino, MD, MSHP (ChristianaCare clinical lead Sickle Cell, Nemours lead adolescent oncology trials), Neal Emery, MD and Allen Friedland, MD, MACP, FAAP (founding director in 2009).
There is a Med-Peds inpatient service led by our med-peds hospitalist team for patients that are homebound and/or with special health care needs that residents and students can rotate.
Dr. Friedland was on the Got Transition Advisory Board and was on the writing group of the 2018 Clinical Report from the American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians: Guidance for Clinicians in Rendering Pediatric and Adult Care Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home.
Other Publications from the Team:
Down Syndrome and Dementia:: A Patient and Care-Giver Centered Approach – PubMed (nih.gov)
Sickle Cell