Talking to Those Who Have Been There: Identifying Barriers to Adult Health Care for Individuals with Phenylketonuria
Capstone Project Committee: Nancy Callanan, MS, CGC, Roland Deutsch, PhD (Statistical Consultant), Dianne Frazier, PhD, MPH, RD, Beth Hudson, MS, CGC, Betsy Swope, MS, CGC
Transitioning adolescents with chronic conditions into adult health care has received increased attention in recent years. A multidisciplinary collaboration at the University of North Carolina at Chapel Hill is working to establish an effective transition protocol aimed at addressing the unique adult needs of patients with phenylketonuria (PKU). There is a lack of published transition protocols and primary research into barriers to adult health care for this patient population. This study was designed to identify factors that may be limiting access to adult health care for adults with PKU. Eligible participants were patients with PKU followed by UNC Pediatric Genetics and Metabolism between the ages of 18 and 35. A telephone survey was developed to understand patients’ general knowledge of PKU, and the challenges they face with diet adherence, use of primary care physicians, use of the metabolic clinic, ability to access medical services, and their use of support systems. Twelve of the fifty-two eligible patients enrolled in the study. These participants were diagnosed through newborn screening, were generally well-educated, following a low-phenylalanine diet, and had good understanding of PKU. While almost all had health insurance, some did not have coverage for their PKU-related health needs or expressed anxiety about health insurance in general. Many participants currently lack a primary care physician and felt displaced in a pediatric metabolic clinic as adults. Online resources were the primary source of new information about PKU. Camps and other events for individuals with PKU were utilized for support. These data may be used to establish a pilot transition protocol for adolescents with PKU, which could include discussions focusing on the importance of the metabolic clinic for adults, change in clinic location for adults with PKU, and an attempt to give patients with PKU more information about health insurance. Modifying this protocol to address the needs of patients with other metabolic conditions seen at UNC may also be possible. Additionally, these findings may be further extended to other health care professionals looking to establish transition protocols for their patients with special health care needs.
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