It’s been nearly 13 years since the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians released its Consensus Policy Statement on Health Care Transitions for Young Adults With Special Needs and 4 years since the AAP, AAFP, ACP Clinical Report: Supporting Health Care Transition (HCT) from Adolescence to Adulthood in the Medical Home was published, but formal adoption of suggested approaches has remained minimal.
A recent survey of 158 members of the Childhood Arthritis and Rheumatology Research Alliance in North America found that fewer than 10% of respondents were familiar with the consensus statement and the HCT clinical report, only 8% have a formal written transition policy, while 42% use an informal approach (J. Rheumatol. 2014;41:768-79). Respondents ranked fragmented adult health care and lack of time to provide sufficient services as the two major barriers to transition.
Dr. Tova Ronis
“Until recently, there hasn’t been a lot of focus on transition in fellowship training, and I don’t know how well the consensus policy statement and HCT clinical report are publicized in residency or fellowship training,” one of the study authors, Dr. Tova Ronis, said in an interview. “There’s definitely a role for more education about the policy statement and HCT clinical report.” As a result of inconsistent transition practices, some patients fall through the cracks in the transition from pediatric to adult rheumatology care. Transition can be difficult and even patients who receive transition care can have challenges, said Dr. Ronis of the pediatric rheumatology division at Children’s National Health System, Washington. She spoke of one young patient with severe systemic disease who was referred to ongoing adult care with an expert in the field. The patient “went to the adult office but didn’t like it there; she didn’t feel like she was being listened to and didn’t feel like the new doctor knew her well. She would come back to us, go back and forth, so her care became very fragmented. We communicated with the adult doctor but there wasn’t one person making the plan [of care].” In addition, other clinicians who had been providing subspecialty care and had not transitioned her to adult practice “were still at the children’s hospital, so when she experienced health problems or pain, she would come to the pediatric emergency department,” Dr. Ronis recalled. “She hadn’t identified the new institution as her medical home, so her care became very fragmented during that transition process. She actually missed some therapy because she didn’t like the new office, so wasn’t seen anywhere for a while.”
Dr. Paul T. Jensen
Dr. Paul T. Jensen said that most clinicians “have a gut feeling” that the current health care transition landscape has limitations, despite the availability of such tools as the Got Transition website, the Transition Readiness Assessment Questionnaire (TRAQ), as well as studies of novel approaches such as having a social worker serve as a transition coordinator(Pediatr. Rheumatol. 2015;13:17 [doi:10.1186/s12969-015-0013-0]) or having clinicians from adult practices see patients at a pediatric institution (Pediatr. Pulmonol. 2013;48:658-65). “I think that most, if not all, pediatric providers, including pediatric rheumatologists, worry about their patients as they get older, especially those who have a decreased maturity level,” said Dr. Jensen, who is a fellow in both adult and pediatric rheumatology at the Ohio State University Wexner Medical Center and Nationwide Children’s Hospital, Columbus. “But I think there’s a large lack of knowledge about what resources are available.”
Choosing transition practices that work for you
Dr. Patience White, a pediatric and adult rheumatologist who in 2011 coauthored the HCT Clinical Report, is familiar with such sentiment. She says that the topic of transition has “come to the forefront because the pediatric rheumatology field has grown. On top of that, many of our patients have grown up and moved on to other aspects of adulthood, so now pediatric providers will need to prepare to ‘let them go to adult health care.’ The perfect storm is happening.” Dr. White codirects the Got Transition Center for Health Care Transition Improvement, a federally funded program located at the National Alliance to Advance Adolescent Health. One of the center’s goals is to expand the use of the Six Core Elements of Health Care Transition that were developed to help make the 2011 Health Care Transitions Clinical Report actionable. These include practice quality improvement strategies such as establishing a transition policy, tracking progress, offering transition readiness assessments, creating a transition plan, transferring to an adult provider, and assessing the youth’s and family’s experience with the transition. The original Six Core Elements of Health Care Transition were tested in learning collaboratives across the United States and have been updated with input from the learning collaboratives and national transition experts into three separate packages of tools and evaluation approaches for transitioning youth to adult health care providers, transitioning to an adult approach to health care without changing providers, and integrating young adults into adult health care. For example, recommendations when transitioning youth to adult health care providers include developing a transition policy/statement “with input from youth and families that describes the practice’s approach to transition, including privacy and consent information,” as well as conducting regular transition readiness assessments, beginning at age 14 years, “to identify and discuss with youth and parent/caregiver their needs and goals in self-care.” Other tools available from the Got Transition website include a set of frequently asked transition questions developed by and for youth/young adults, as well as many transition resources.