Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review

Abstract

Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co-morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co-morbidities and other adverse health issues at higher rates than those who entirely switch to an adult-care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decisionmaking capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.

Neurofibromatosis Type 1 (NF1): Addressing the Transition from Pediatric to Adult Care

“…Several barriers to effective HCT have been identified (Table 3) and include limited or lack of insurance coverage, income/financial concerns, lack of service coordination, lack of support from ancillary staff (eg nursing, social work, and case management), healthcare culture differences, work involved in transferring and accessing medical records, difficulty obtaining reimbursement for extended clinic appointments, lack of provider knowledge and comfort caring for individuals with special healthcare needs, poor communication between the healthcare provider and family, lack of communication and anticipatory guidance about the HCT process, and family stress and comfort with medical complexities. 2,3,26,63,64 Notably, Gray et al 65 found that a prominent barrier to HCT reported by patients and families is relationships. Patients are often reluctant to leave their pediatric care team and have difficulty accessing knowledgeable adult providers whom they trust with their concerns.…”

Unraveling Down Syndrome: From Genetic Anomaly to Artificial Intelligence-Enhanced Diagnosis

“…The neurodevelopmental and cognitive profiles observed in individuals with Down syndrome are characterized by significant diversity, presenting unique challenges and opportunities for diagnosis, management, and support [22]. Comorbidities associated with Down syndrome further contribute to the complexity of providing comprehensive care to this population [23][24][25]. Cognitive impairment in individuals with Down syndrome can range from mild (with an IQ between 50 and 70) to moderate (with an IQ between 35 and 50), and occasionally, it can be severe (with an IQ between 20 and 35) [26,27].…”

Healthy transition: Roadmap for young adults with Down syndrome to adulthood

“…The execution of transition is not an overnight event but rather a purposeful and planned process that equips young adults with the tools to navigate adult healthcare with confidence. For youth with Down syndrome, a comprehensive and longitudinal transition into adult oriented healthcare is especially important, as several gaps currently exist that compromise their access to and ease of mobility in adult healthcare contexts (Varshney et al, 2022).…”