Clinician Perceptions of Transition of Patients with Pediatric-Onset Chronic Disease to Adult Medical Care: Comparing a Pediatric Facility Integrated within an Adult Institution with a Free-Standing Pediatric Hospital

IntroductionMedical and surgical innovation for the treatment of complex pediatric diseases has increased survival into adulthood for diverse patient populations, including those with cystic fibrosis, congenital heart disease, diabetes, sickle cell disease, inflammatory bowel disease, childhood cancers and organ transplantation (1-7). As these patients enter adolescence and young adulthood they will require skills to become independent adults capable of managing their own healthcare needs. Despite this, transitioning programs have not become universally accepted, with the majority of such existing programs being conditionspecific and informal (5, 7-11). In the United States many adults with pediatric origin chronic disease continue to receive care at pediatric facilities (12). The lack of a standard approach to transitioning education/assessment may inhibit the successful transfer of these patients to an adult-oriented health care system. In a recent study, we found that at one of the largest free-standing children's hospitals, patients are not routinely provided with this transition related education and assessment. Attachment of the patient and parent to the pediatric provider and facility emerged as significant barriers to adult-oriented care (13). The objective of this study was to determine if the delivery of transitioning education/assessment and barriers to transfer to adult-centered care differ at a pediatric facility that is integrated within an adult institution compared to a free-standing children's hospital. We hypothesized that many of the barriers to adult-centered care in free-standing children's hospitals would not exist in a pediatric facility intimately aligned with an adult healthcare institution.MethodsWe conducted a cross-sectional web-based survey of health care clinicians at a pediatric facility that is integrated within an adult institution (IPF) and a freestanding children's hospital (FSCH), as previously reported (13). In the IPF, we identified 195 clinicians, including physicians, nurses and social workers who were likely to provide care to patients over the age of 11 years in outpatient settings. Clinicians not actively seeing patients over the age of 11 in outpatient settings were excluded from further questioning. The survey was approved by the local institutional review board and administered in July of 2010.Survey designThe survey tool has been previously described in detail (13). It was developed over a 12-month time frame, through a working group of 10 clinicians and researchers with an interest in health care transition. The working group included physician, nursing, physician assistant and social worker representation. The clinicians had a wide range of outpatient clinical expertise including cardiology, pulmonology, gastroenterology, adolescent medicine, general surgery and hematology/oncology. Questions were developed based on a review of the health care transition literature and guided by a survey methodologist. The final survey included a total of 25 questions within the following six categories: 1) inclusion criteria; 2) transitioning education/assessment; 3) transfer to an adult-oriented health care system; 4) demographics; 5) age appropriate care; and 6) resources.Transitioning was defined as the "tools required by patients to become independent adults capable of managing and self-directing their healthcare" and encompassed disease knowledge, understanding of medication use and side effects, symptoms requiring urgent care, congenital/genetic anomalies in offspring, impact of high risk behaviors and disease impact on education and insurability. Transfer was defined as the "movement of adolescents and young adults with chronic physical and medical conditions from childcentered to adult-oriented health-care systems" (14). Statistical analysisDescriptive analyses of provider demographics were summarized using means and standard deviations for continuous variables and proportions for categorical variables. …