Endocrinology patients tend to have chronic illnesses that require lifelong care. Furthermore, many endocrine conditions evolve, so appropriate treatment approaches can change over time as well.
Coordinating the transition from pediatric to adult endocrine care is thus incredibly important, both for maintaining continuity and quality of care as well as reducing complications.
For example, a growing body of literature shows that pediatric type 1 diabetes patients who are lost to follow-up in adulthood tend to have more ER visits, more hospitalizations and worsening complications for their diabetes than those who make successful transitions.
A More Integrated Patient Care Experience
In April 2019, Courtney N. Sandler, MD, MPH, founded the Brigham and Women’s Endocrine Transition Care Clinic to provide care to young adults transitioning from pediatric care to adult care. Dr. Sandler described the clinic as a “care coordination network for doctors who are established in our system.” Participating Brigham endocrinologists see patients at the main hospital in Boston as well as three other locations.
The Boston Children’s Hospital’s endocrine program, one of the largest in the nation, is the primary referral source for the Endocrine Transition Care Clinic. The Brigham previously had no organized transition program serving young adults with endocrine disorders.
“Even though our two tertiary health care systems are close by, [the endocrine programs] haven’t traditionally been connected through patients or medical records,” said Dr. Sandler, who directs the Brigham’s clinic. “We’re creating an opportunity for the two institutions to come together to facilitate patient care.”
Dr. Sandler stressed that the clinic will also accept patients from other hospitals and private practices. “Our aim is to provide a seamless transition to adult endocrinology, no matter where patients are coming from,” she said.
Generating Insights for Quality Improvement
A long-term objective for Dr. Sandler is to establish a registry of transition patients to understand their health care usage patterns and clinical outcomes. She hopes this data will serve as a valuable source of research that informs quality-improvement efforts at the Brigham and in other transition programs.
A more immediate goal is to educate pediatric and adult providers on supporting an appropriate transition for young adults with complex illness. For example, Dr. Sandler has been involved in several review articles and will soon be speaking on transition of care at a conference for pediatric endocrinology providers.
“The literature on the transition of care shows that when it’s not planned and done thoughtfully, it isn’t successful. Patients either fall through the cracks or aren’t prepared when they come to adult care,” she said. “We want to educate providers on both sides of the transition so that the process is well-planned. When the time comes, we want patients to feel ready and know specifically where to go to continue receiving quality care.”
“If we don’t educate providers, they may not be equipped to care for patients and families. And that may prevent patients from continuing to seek care in the future,” added Dr. Sandler.