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.
“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 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.
While she acknowledged it may not be feasible for pediatric and adult rheumatologists to implement all Six Core Elements in their practice, Dr. White suggests providers might try implementing at least one or two and, for pediatric rheumatologists, start the discussion of the transition process when their patients reach the age of 13 years as recommended by the HCT clinical report. “Everybody says it’s hard, and I agree, changing practice processes to improve health care is hard work,” she said. “We know preparation for the youth and family needs to happen. We know transfer and communication has to occur, and that the accepting adult provider has to be informed and comfortable to make the transition process a success. It is about choosing one or two Six Core Element tools that can work for you, your practice, and your patients to help them through the transition process. If you’re an adult provider, you might choose to offer a welcome letter to my practice and a self-care assessment for the new young adult patients joining the practice so the adult health care provider can understand how proficient the young adults are with respect to their self-care skills and knowledge of the adult health care system.”
Disease-specific toolkits coming in 2016
Dr. White is also a consultant to the Pediatric to Adult Health Care Transitions Workgroup, an effort of the ACP Council of Subspecialty Societies to address gaps in care that exist with the transition of pediatric patients into adult health care. According to an ACP document describing the effort, the goal of workgroup is to identify “common tools/templates for a ‘general’ transition process, and subspecialty societies will utilize the templates to develop customized toolkits for specific diseases/conditions. The toolkits will then be collected and broadly disseminated,” with release targeted for May 2016 at the ACP national meeting. Dr. Stacy P. Ardoin, who is leading the rheumatology subspecialty group on behalf of the American College of Rheumatology, said the fact that this effort was initiated by the ACP “is great, because historically most of the interest in transition has bubbled up from the pediatric side. I think that adult providers are realizing more and more that patients who come to them with complex childhood onset conditions are challenging to manage, and that we really need to partner together to make things the best for our patients.”
Dr. Ardoin, a rheumatologist in the department of internal medicine at the Ohio State University Wexner Medical Center and in the department of pediatrics at Nationwide Children’s Hospital, characterized the final product as “not so much a definite protocol that everybody has to follow, but more just providing recommendations to the practitioner saying, ‘these are the things that we recommend and here are some tools to accomplish it.’ There’s such a lack of standardization for anything with transition despite the fact that we have consensus statements that have been put out in the past. Perhaps part of the problem is that they were too vague or not considered individually for each specialty. Hopefully, having each specialty take this on and look at their unique needs in the transition process will make people more willing to participate.”
Preparing patients to become health care self-advocates
Not all physicians are convinced that more recommendations will help clinicians navigate the intricacies of health care transition, however. “If children come to you as a physician at a young age (most of the kids with arthritis) or very ill (most of the children with systemic lupus erythematosus), good care over time represents a significant bonding experience,” said Dr. Thomas J. A. Lehman, chief of the division of pediatric rheumatology at the Hospital for Special Surgery in New York. “The children come to see you as a significant other in their life. If they then are suddenly ‘cast out’ because they reach a certain age it doesn’t go down any better than it would if a significant relative ‘cast them out.’ The doctors like to think they are transitioning the patients. The patients who have bonded feel they are being rejected. I don’t have an answer to this problem. However, none of the past HCT policy statements adequately recognize this aspect.”
For her part, Dr. White, who is also professor of medicine and pediatrics at George Washington University, Washington, said that in some published studies pediatric providers acknowledged that they are reluctant to transition patients to adult health care providers “and can overprotect their young patients as some parents do. This approach can result in the young adult being a poor self-advocate in the adult health care environment and not receiving developmentally appropriate health care. If a pediatric patient and family have not been informed of when they can no longer come to the pediatric rheumatology practice and have not discussed a transition to adult health care plan, they often assume they can stay with their pediatric rheumatologist forever.”
In addition, Dr. White continued, “some pediatric rheumatologists might say, ‘adult providers don’t know how to care for pediatric rheumatology [patients].’ Well, that may due to the adult providers not having received training in specific pediatric onset conditions. Communication between the pediatric and adult providers is key to a good transition experience for everyone. Trying to quickly build a new relationship with a new young adult patient to keep them engaged in their care and who has been used to the same pediatric provider for years is challenging, and the young adult and the adult provider need the pediatric provider’s support and availability to be a consultant to support the adult provider in the areas where they have little disease-specific experience.”
Dr. Jensen makes it a point to talk to his patients about health care transition in early adolescence, helps them set goals, and encourages them to “take more ownership in late adolescence for his or her own health: making their own appointments for follow-up visits, giving time to the patient in the room alone, and asking patients to maybe monitor medication adherence but not to lay the medications out for the patient in the morning,” he said. “When patients are given that opportunity, they may mature.”
Dr. Ronis, who is implementing a health care transition program at Children’s National Health System, thinks about health care transition as “a time where there’s risk for potentially worsening disease and negative outcomes due to perceived fragmentation of care. The more prepared we are and the more we prepare our patients to do this successfully, the better outcomes our patients will have.”
The Got Transition Center for Health Care Transition Improvement is funded by the Health Resources and Services Administration. The physicians interviewed for this story reported having no financial disclosures.
