Dr. Patience White
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. Stacy Ardoin
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.”