On a recent clinic day my first patient was Maria, a 25-year-old woman who was born with a serious heart condition. She had surgery as a baby and has been doing quite well as far as her heart is concerned. However, her cardiologist recently realized that Maria has not had a primary care doctor in years. Today I want Maria to have her first Pap smear and her first cholesterol check. But Maria also wants to talk about whether it is safe for her to get pregnant. She also wants help finding a new cardiologist, because her pediatric cardiologist said that she is getting too old for the children’s hospital.
The second patient on my schedule is Christian, a 17-year-old boy with autism and non-verbal intellectual disability. Christian’s mother works very hard to keep him healthy. However, she does not speak English, which makes it challenging for her to communicate with Christian’s school and his medical team. Today his mother and I need to talk about Christian’s educational plan at school, applying for guardianship before he turns 18, and transferring Christian’s care to adult specialists over the coming years.
I see patients like Maria and Christian every day. As a primary care physician who is dual-trained in both internal medicine and pediatrics, I have a special interest in helping young adults navigate the transition from pediatric-oriented to adult-oriented health services. Some patients, like Maria, need additional education about self-care and what to expect of their health as they age. Other patients and families, like Christian and his mother, need help understanding the community resources available to adults with disabilities.
Unfortunately, the health care system does not do a good job of supporting young adults with chronic conditions. National data demonstrate that only 40 percent of youth with special needs get all of the support they need to transition to adult life. The figures are even lower for youth whose families live in poverty or who do not speak English at home.
We know that there are many barriers to successful transitions. For example, pediatric providers often do not understand how adult health services work, nor do they have any personal connections to adult providers. The adult providers may not know much about conditions that used to be considered purely “pediatric,” like autism or congenital heart disease. Patients and families feel safe with their pediatric team and may not want to forge new relationships with an adult health team. There are systems-level barriers too, such as lack of affordable health insurance.
Recently the Lucille Packard Foundation called for wide-ranging improvements in young adult transition care, using the Triple Aim as a framework. The Triple Aim, developed by the Institute for Healthcare Improvement, encourages design of health care systems that improve care quality & patient satisfaction, reduce care costs, and improve the health of populations.
We know that youth in transition experience an increased number of health problems, even an increased risk of death, as was found in a study of youth with sickle cell disease. So we can say that better transition care might improve the health of populations. Study after study describes patients’ and families’ overall dissatisfaction with the current state of transition care; therefore better transition care might improve patient experience.
There are also studies showing that health care costs are higher for young adults with complex medical issues; for example these youth are more likely to be re-admitted to the hospital than are young children. Perhaps, then, better transition care will lead to lower costs.
The Triple Aim for Young Adult Transitions is a goal that is far from being realized. We need more outcomes-based research, and a better appreciation of costs, in order to understand what improvements will lead to better transition care.
At Boston Children’s Hospital we are trying fill in these knowledge gaps, through the work of the Weitzman Family BRIDGES Adult Transition Program. In our primary care clinics, we are developing a team-based approach to transition care that we hope will enhance population management of complex young adults. We are also developing Help Steps, a web-based tool to link families to important resources, like home care and accessible housing. We hope that this tool will improve patients’ experience of transition. Improving cost remains elusive but is the next step in the complicated arena of young adult health transitions. Maria, Christian, and the millions of youth like them deserve smoother pathways to adulthood.
This post originally appeared on the Harvard Medical School Center for Primary Care’s Prime Time blog.