Residency Training in Transition of Youth With Childhood-Onset Chronic Disease

DISCUSSION

A growing number of YSHCN are transitioning into adult care. The 2002 joint consensus statement¹⁰ recommended educating primary care providers about pediatric-onset chronic illnesses and effectively transitioning patients with these diseases from pediatric to adult care. Although most PEDRs and IMRs agreed that there should be an appropriate age for transition of care and that it should occur around the age of 18, most IMRs had received little or no formal training for how to transition these patients. We believe that most residents chose the 18-year age as a transition point because it corresponds with the classic definition of the end of childhood (ie, graduating high school), and it may also coincide with admission guidelines for adult versus pediatric facilities.

In addition, our survey of PEDRs and IMRs revealed striking inadequacies in training about various chronic childhood illnesses, which suggests that the trainees in the internal medicine program received little or no training about childhood-onset illness such as spina bifida. Discomfort with neurodevelopmental disorders such as autism spectrum disorders was particularly striking. Providers must, at a minimum, be educated in the disease process itself but should also be equipped with tools for facilitating the transition of care. They should be able to engage YSHCN in age-appropriate self–medical care.^10,–,12 The providers should also help YSHCN and their families anticipate developmental and psychosocial changes related to insurability, vocational readiness, and increasing medical management.¹³ A lack of training in the disease process and how to transition care may significantly impede a provider's ability to guide and counsel patients on long-term anticipated morbidity inherent to the disease and its impact on psychosocial development.

As YSHCN transition into adult care, IMRs must be comfortable in both outpatient and inpatient management. IMRs, in particular, expressed a striking lack of comfort about providing care for hospitalized young adults with a variety of chronic illnesses. By increasing comfort in providing care for this patient population, providers will be more aware of potential morbidity and mortality specific to each chronic disease process. This awareness will empower providers to create long-term medical plans and provide disease-specific preventive counseling. IMRs need mentors to role-model effective care of YSHCN. Perhaps with better training and mentoring, IMRs might be more likely to accept YSHCN into their clinic practice. Likewise, as providing care to YSHCN within adult facilities becomes more accepted, the impetus to train IMRs in childhood-onset chronic illnesses will continue to grow.

A clear need exists to mandate transition training for all IMRs and PEDRs. As exemplified by the American Academy of Pediatrics Community Pediatrics Initiative and the Adolescent Health Transition Project through the University of Washington, several models for resident-level transition training already exist.^14,15 These models should be used as the basis for developing a comprehensive national curriculum that training programs can implement. Committed faculty mentors are essential; residents should be instructed by providers with experience in transitioning YSHCN in all medical subspecialties and in general practice. Residency program directors should be cognizant of potential funding sources for resident advocacy projects related to transition. Also, because successful transitions are multidisciplinary, new physicians must be trained to work in health care teams to accomplish transition goals. Practitioners must be empowered from early residency through continuing medical education with the knowledge and tools for coordinating these transitions.

Recognizing the dearth of residency training regarding YSHCN, we created a transition curriculum and advocacy project known as WISHES. WISHES is a model for providing comprehensive transition education to providers in a multidisciplinary manner. The 3 goals of the WISHES curriculum are to create and administer a health care curriculum pertinent to YSHCN, to train IMRs and PEDRs as care providers for YSHCN and educate health care professionals about the importance of transitions to adult care, and facilitate the transition of YSHCN from pediatric to adult medical providers. The WISHES program delivers disease-specific transition presentations through an internal medicine and pediatrics conference series, a medical school advocacy seminar as part of the core IMR and PEDR curriculum, and a training program for ancillary health care professionals. In addition, residents work directly with patients in inpatient and outpatient settings. Future directions for WISHES include expanding and sustaining existing projects, evaluating the effectiveness of current initiatives, and working with national groups to improve transition services by improving provider education.