DESTIN, FLA. – The pediatric-to-adult rheumatologic care transition is a process that should begin early in the course of care, according to Dr. Brian Feldman.
And the process should be presented as a normative event, he said at the Congress of Clinical Rheumatology.
Findings from a 2011 quantitative and qualitative meta-analysis showed that patients prefer an approach that treats transition as a "normal part of life" because that makes the process easier, Dr. Feldman said (J. Adolesc. Health 2011; 48:429-40).
Dr. Brian Feldman
Other basic conclusions from that meta-analysis were that transitioning should involve clarifying and discussing patient expectations about the process, joint planning with the patient regarding the specific steps of transition, and provision of an optimal environment and resources for transitioning, he said.
Another paper on the transition process from the cystic fibrosis literature includes similar advice and provides additional clarification with a list of "transition best practices," said Dr. Feldman, professor of pediatrics and medicine, and senior scientist and head of the division of rheumatology at the Hospital for Sick Children, Toronto.
These best practices include:
• Starting early. "In our clinic, we start transitioning patients when they are 13, when they’re just coming into the adolescent years," he said, noting that patients cannot be seen after the age of 18 years at his center.
• Evaluating the patient without the parent. For Dr. Feldman, this also starts when patients are age 13. Patients are seen without their parents, at least for part of the visit, to help prepare them for the adult care environment where they typically won’t have a parent present during visits.
• Providing transition planning for all patients at a defined age. It’s tempting to delay transition planning until patients are deemed "ready" or "mature enough," but all patients need this, and in the meta-analysis on patient needs, pediatric patients expressed a desire for this type of expectation setting, he noted.
• Arranging for the patient to meet the adult care team prior to the transition to reduce anxiety. In his practice, Dr. Feldman arranges a visit or two with the adult care provider when a patient is 17 and preparing for transition, but still in his care. This provides a chance for the patient to make sure he or she likes the new physician, and provides a sense of familiarity once the transition occurs, he said.
• Keeping the lines of communication open. This pertains to communication between the pediatric and adult care offices to ensure a smooth transition.
• Ensuring that the patient has an ally throughout the process. "In our clinic, that’s either the nurse or the social worker who works with them as they move through this process," he said.
A 2011 systematic review shows that starting the transition early and adhering to best practices really does provide benefits for the patient. In six of the studies included in the review, the programs and practices that were found to be of particular benefit included disease-specific education programs, generic education and skills training, availability of a transition coordinator, joint pediatric and adult clinic services, and separate young adult clinic services that can serve as an intermediate step toward adult care, he said.
Among other factors that Dr. Feldman said he has found useful in his practice are the use of a self-assessment questionnaire at every visit starting at age 13. This encourages patients to know and understand their diagnosis and health status (they are asked about their last eye examination, for example) and to be able to discuss their symptoms and medications. Patients also are asked at the end of each visit to write down what was discussed and what the plan is going forward, and Dr. Feldman completes a transition readiness assessment.
Adolescent patients complete a health screen to identify areas that may need attention in the adolescent medicine clinic or from a social worker, and at age 17, patients are asked to fill out another questionnaire about their transition process to ensure they understand the process, know the name of their new physician, and know what is needed and expected of them during the process.
Considering the transition as a process that begins early will help ensure that patients arrive at the adult care setting armed with the knowledge they need to successfully participate in the management of their care, he said.
Dr. Feldman is a member of the data safety monitoring board for Novartis and Bristol-Myers Squibb. He said he has received research grant support from Baxter and Bayer.