Standing in the glass-lined hallway connecting Children’s Hospital Boston to Brigham and Women’s Hospital, Danielle Braun, 22, says she considers Children’s her second home. Braun had open heart surgery at Children’s when she was just a few weeks old and spent her first five months of life in the hospital’s Cardiac Intensive Care Unit. Over the next 20 years, she saw a myriad of Children’s specialists who treated her for complications from her original condition. But by the time Braun celebrated her 21st birthday, she felt it was time to ‘graduate’ to adult care, even though leaving the hospital she had known for most of her life was a scary prospect.
“I liked all my pediatric specialists, but it started to feel weird being the oldest patient in the waiting rooms,” she says. “I was thinking about college while sitting next to babies. Seeing doctors who knew me and my condition was important, but part of me wanted to move to the next phase.”
Braun’s desire to be treated by adult caregivers, without completely severing ties with trusted pediatric doctors, represents the often-tricky nature of transitioning, a complex problem that many clinicians at Children’s are actively trying to solve. How can the hospital create smooth pathways for young adult patients—especially those with complicated medical histories— so there’s a sense of consistency when they transition to adult care?
Each year, half a million American pediatric patients enter young adulthood, requiring a switch to adult doctors who better understand their bodies. For many patients it’s a smooth and natural process, but for those with complex medical needs, it can present a challenge. “From a medical point of view adult care doctors need to be trained in what to look for when treating younger patients with specific medical histories,” says Niraj Sharma, MD, MPH, of Children’s Hospital Inpatient Service (CHIPS) and program director of the Internal Medicine-Pediatrics Residency training program at both Children’s and Brigham and Women’s Hospital. “But from a social side, we also need to make sure they’re properly trained to interact with young adults who have lived with conditions for years. That’s not necessarily knowledge one gets in medical residency.”
To help care providers better serve young adult patients with a history of pediatric illness, Sharma founded the Transitioning from Pediatric to Adult-Centered Medial Care Conference, a monthly meeting between staff members at Children’s and Brigham and Women’s. At each meeting a guest speaker addresses how transitions are approached in their field, then the group of doctors, nurses and social workers engage in a round-table conversation on those strategies.
“Making the group multidisciplinary has been a huge advantage because diversity is where rich solutions to complicated problems tend to come from,” Sharma says. “I wanted clinicians from all backgrounds and both hospitals to be able to come together and talk about a problem that affects us all.”
A common topic at Conference discussions is devising ways to help adult-care providers treat conditions that have traditionally only been associated with pediatrics, and teach pediatricians to better prepare patients for transition. Advances in modern medicine have led to many patients with pediatric conditions once considered fatal living well into adulthood. The increased survival rates are cause for celebration, but also present challenges for adult care doctors who may be unfamiliar with their treatment.
“These days, many young adult patients have diseases that some doctors may have never encountered before, because until relatively recently, patients with them didn’t live to adulthood,” says Frances O’Hare, MD, co-facilitator of the conference and a pediatrician Children’s Martha Eliot Health Center. “It’s a knowledge issue that can be addressed by raising awareness of these conditions and their treatments.”
Separation anxiety is another transitioning obstacle, and it occurs on both sides of the examination table. Pediatricians, patients and their families spend a lot of time together; when it’s time for the relationship to end, it can be difficult for everyone. The consensus at most conferences is that pediatricians should introduce the concept of transition very early into treatment, and reinforce the idea throughout the years, so it’s less of a shock for everyone when it happens.
“Caregivers and the families of their patients often form close bonds; severing that tie can be tough if everyone isn’t prepared for it,” Sharma says.
Patients who transition well usually display a good deal of independence and play an active role in their treatment. Most conference members suggest that whenever possible, patients in their late teens should be booking their own appointments, administering their own medication and talking openly with doctors instead of through a parent. This way, when they transition, they’ll be more prepared to independently manage their medical needs as adults.
To achieve a healthy level of self-sufficiency, conference members recommend making young patients responsible for aspects of their care in incremental steps, gradually increasing their responsibilities as they grow, until they reach an independence level that’s appropriate for their age and condition.
It’s a method that worked for Braun, who by 21 was in complete charge of her care, making her transition that much smoother. “It’s not easy being a kid, and being one with health concerns can be even harder,” she says. “But the sooner you realize you can’t rely on your parents and doctors for everything, the better. It can be hard, but that’s a normal part of growing up for everyone, not just kids in the hospital.”