By Rosalyn Stewart
In a previous post, Kathy DeRuggiero discussed how Johns Hopkins helps patients transition from pediatric to adult care by having a children’s hospital integrated within our flagship hospital. We see the best outcomes when we work in tandem with patients, when possible, and their families — though no transition is easy.
I had the opportunity to moderate a panel discussion titled “Healthcare Transitions: Building Bridges Between Pediatric and Adult Care,” held at The Johns Hopkins Hospital. The panelists were pediatric physicians and nurses, an adult care physician, mothers of current and former peds patients, and one brave 17-year-old who’s been a Johns Hopkins patient since 2009.
They offered their perspectives on what patients, parents and providers can each contribute and what they should expect during the transition to adult care.
It was an informative — and, at times, moving — discussion. Let me share some of the panelists’ first-hand advice on how to ease the transition:
Big changes are often scary. The transfer to adult providers typically occurs when patients are between ages 18 and 21, a time when young people may be leaving high school and heading off to college and jobs. This is already a stressful time in life, but patients with complex health care needs can experience extra anxiety. For adolescents, you should identify and process your fears with your parents and your physician to get the support you need to make the transition with confidence.
Let your babies go. Parents may also be anxious about their child’s transition. Many have spent their lives advocating for their child’s health and may have a hard time letting go of that role. As your child ages, his or her doctors may prefer to offer treatment without you in the exam room; you can’t always be there to give answers. Accept this as a way to nudge your teen toward independence, and find ways to educate your child to advocate for him- or herself. While you hand over the reins of medical decision-making, it’s also good to reassure your child that you’ll always be there to listen and help however you can.
Different patients, different transition experiences. For some patients, the transition to adult care could begin as early as age 15. The process depends on the patient and his or her knowledge base, personality, maturity and trust in adult providers. Other factors for consideration include the patient’s health status and insurance, legal issues, community resources, housing and access to transportation. Additionally, the transition time may depend on the protocol of the specialty or specialties treating the patient. However, it’s never too early to begin talking about moving from pediatric to adult care and milestones that patients will need to meet as part of that transition.
Choose the right next provider(s). As soon as possible prior to the transition, begin to research and interview adult clinicians. Try more than one out if necessary to find the right fit for you or your child. Make sure the patient has a chance to weigh in on a future provider’s gender, location, reputation and special-needs knowledge. Also discuss what the patient’s activities, goals, skills, and post-secondary educational or vocational training interests are to make sure you have a provider who will provide the appropriate care and resources as the patient assumes adult roles and activities. Have a plan in place so you don’t have to scramble in an emergency situation.
Provide CliffsNotes. Parents should develop a one-pager on their child’s health history, including medical insurance and history of hospitalizations, procedures and tests. New physicians will have your child’s medical records, but this could literally be hundreds of pages or screen scrolls. Help providers understand your child as a patient and as a person. Begin to prepare your child as early as possible about how to communicate clearly and honestly with physicians to maintain or improve their health.
Education + preparation = smoother switch. Patients need education and resources to understand their conditions, their course of treatment moving forward and any potential complications. As they assume greater independence, they may need reminders about taking medications, staying on top of insurance, keeping appointments and making healthy lifestyle choices (there are apps to help with this). Providers can also help by arranging for teens to speak with other young adults who have already gone through the transition.
Don’t avoid the tricky stuff. The transition to adult care brings up many complex and ethical and legal issues. Have the tough conversations with your child or parent about issues such as patient confidentiality or whether the patient may need decision-making support from a third-party proxy, such as through guardianship or power of attorney. Also bring all relevant stakeholders to the table to thoroughly understand how health insurance coverage changes in the transition to adult care; be aware that a patient’s age can affect what services and providers he or she can access.
Raise the bar on transition support. Providers need to think about the transition process in terms of all its moving pieces and figure out how to work together to make the transition process more straightforward for patients and families. This could involve growing capacity in adult care for complex conditions, automating medical forms and medical histories, improving tracking for patients in transition, hiring transition coordinators, creating more teen educational programming, and developing relationships with colleagues to ensure patients and families receive warm hand-offs as they transition to adult medical care.
Dr. Rosalyn W. Stewart is an associate professor of medicine and pediatrics at the Johns Hopkins University School of Medicine. She holds a joint appointment in population, family and reproductive health at the Johns Hopkins Bloomberg School of Public Health and community-public health at the Johns Hopkins School of Nursing. Her areas of clinical expertise include internal medicine, pediatrics and care coordination. Dr. Stewart serves as the medical director for care coordination and resource management at The Johns Hopkins Hospital. She is also director of the after-care clinic at the Johns Hopkins Outpatient Center and the associate director of the longitudinal clerkship.