New guidelines for psychology’s role in pediatric-to-adult health care transitions

Four in 10 children and adolescents in the United States have a chronic health condition, according to data from the 2023 National Survey of Children’s Health. These range from common conditions like asthma to rarer illnesses such as childhood cancer and congenital heart disease. Most of these children will manage these conditions into adulthood and throughout their lives. The transition from pediatric to adult health care, however, can be a tricky time for adolescents and young adults.

As adolescents with chronic diseases become adults, they must develop the skills to manage their own health needs and navigate a complex health care system. The transition can be difficult logistically and emotionally, both for young adult patients and family members who have, until that point, been largely responsible for their child’s health and safety. “It is a significant cultural shift that involves changing relationships, beliefs, expectations, knowledge, and skills,” said Siddika Mulchan, PsyD, a pediatric psychologist at the University of Connecticut School of Medicine and Connecticut Children’s who works with children with cancer and blood disorders, including sickle cell anemia.

As a cochair of the APA Division 54 (Society of Pediatric Psychology) Adolescent and Young Adult Transition Taskforce, Mulchan and her colleagues developed APA’s new Guidelines for Psychology’s Role in Pediatric to Adult Health Care Transition. The guidelines detail how psychologists can make those shifts safer and more successful for patients, families, and providers.

Young people with chronic illnesses often receive multidisciplinary care, with professionals including nurses, social workers, and various medical specialists, each playing a part in facilitating the shift to adult care. Often, there are opportunities for psychologists to play larger roles in supporting patients, caregivers, and other providers through the transition process, said Lisa Schwartz, PhD, a clinical psychologist at Children’s Hospital of Philadelphia and the Perelman School of Medicine at the University of Pennsylvania, and one of the three cochairs of the Adolescent and Young Adult Transition Taskforce. Indeed, psychologists’ unique skill sets make them a natural fit for that role. “Successful health care transition is not just about making sure patients have the skills and knowledge [to manage their medical conditions]. It is also building intrinsic motivation, aligning priorities and expectations, and improving communication between patients, parents, caregivers, and providers,” she said. “There is a huge role for behavioral science in these transitions.”

After years of having their health needs managed by parents or other caregivers, young adults with chronic conditions are tasked with a host of new responsibilities, from finding new doctors and acquiring health insurance to behaviors like monitoring blood sugar and maintaining medication regimens. That presents a sharp increase in responsibility in an already challenging time, Mulchan said. “The period of adolescence and young adulthood is so stressful and fraught, with a lot of change,” she said. “It is a difficult time to also be undergoing a change in your health care team.”

Pediatric care also has its own culture that is vastly different from adult care, Mulchan added. Pediatric providers tend to be more flexible with appointments and spend more time with patients. A warm, ­patient-centered approach is usually the norm; indeed, for many patients and their families, pediatric care providers come to feel like family. Against that backdrop, engaging with unfamiliar providers can be emotionally draining. And while they are leaving that trusted care team behind, young adults are also gaining more independence and taking more responsibility for their own health decisions. In a best-case scenario, young adult patients maintain continuity of care through that shift and settle into a new routine. “When transition is a success, patients are showing up to adult care appointments, asking questions of their providers, following medical regimens autonomously, and are engaged in their care,” Mulchan said. “They have a sense that they have transitioned into a new medical home.”

When the transition does not go so smoothly, however, the consequences can be dire. The transitional period has been linked to increased complications from conditions such as spina bifida and lupus, for instance. Among people with sickle cell disease, mortality rates are highest between the ages of 19 and 24 (Cassidy, M., et al., BMJ Open, Vol. 12, No. 12, 2022opens in new window). Similar difficulties can occur across health conditions, from Type 1 diabetes to cystic fibrosis to congenital heart disease. “Without the hand-holding of the pediatric support system, without care being driven by parents, it is a cliff that people often fall off,” Schwartz said.

A structured planning process can reduce the risks of transition and improve health outcomes for young adults with medical conditions. However, research suggests that most youth and young adults with special health care needs do not receive the support they need to transition successfully (White, P. H., et al., Pediatrics, Vol. 142, No. 5, 2018opens in new window). “Youth with chronic medical conditions often have brief conversations, or sometimes no conversations, with any provider about the transition process,” said Frances Cooke, a clinical psychology graduate student at Catholic University in Washington, D.C., who is training to work with youth with chronic medical conditions and also a cochair of the guidelines task force.

Organizations such as the American Academy of Pediatrics and the American Academy of Family Physicians have also developed professional practice standards to improve health care transitions and health outcomes for young adult patients. “However, those guidelines don’t always emphasize the need for psychologists to play a role,” said Paul Kettlewell, PhD, a retired pediatric psychologist and a member of the APA Committee on Professional Practice and Standards, which reviewed the new guidelines. “Psychologists should be central to this process,” he added.

To address that need, the Adolescent and Young Adult Transition Taskforce and Division 54 developed APA’s new guidelines in consultation with Got Transition, a federally funded national resource center on transitioning from pediatric to adult health care. The center had previously created an ­evidence-based framework to help physicians facilitate the shift to adult care (White, P., et al., Six Core Elements of Health Care Transition™ 3.0, Got Transition, 2020opens in new window). APA’s new guidelines were designed to complement such resources by providing best practices for psychologists, particularly those working in hospital settings who may encounter youth with health conditions.

“The fact is, psychologists have been engaging in this work for a long time, spearheading a lot of the research and clinical work in health care transition,” Mulchan said. Having professional practice guidelines in hand offers best practices to enable them to do that work even more effectively.

Careful planning is critical for a smooth transition from pediatric to adult health care, the guidelines emphasize. “If transition is an afterthought, it is very unlikely to be successful,” Mulchan noted. Accordingly, several items in the new guidelines emphasize this planning process. The first step is often helping families understand that transition is both necessary and beneficial. “Pediatric providers are not trained to care for adult bodies and adult needs. For patients to get the best quality care, they need adult providers,” she added. “It can be really helpful to frame this as a positive for patients and families.”

Beginning well in advance of the transition, psychologists can work with families and medical teams to develop a transition statement or guide. That guide can serve as a personalized road map from the planning stages through the completed transfer to adult care. In addition to discussions of medical interventions and goals of care, such guides can highlight specific skills and milestones to work toward during the transitional period, in areas such as social support, psychological functioning, family functioning, social drivers of health, beliefs about self-care, and a patient’s level of self-efficacy in disease management.

Transition guides differ from person to person, depending on a person’s medical needs and their personal goals, values, and cultural preferences. To help families create that road map, psychologists can engage patients and their families in conversation to understand how they define a “successful” transition, Cooke said. “There is no one behavior or benchmark that will look the same for every patient,” she added.

The guidelines also describe the role psychologists can play in facilitating communication between patients, families, and care teams—including both pediatric and adult providers—as they work together to develop a transition statement. Psychologists can act as a communication liaison to help everyone speak the same language and work toward the same goals.

Health care transition is a gradual process that can take several years, experts say. Ideally, adolescents have time to mature and practice the skills necessary to manage their health and medical care. Such abilities are wide ranging, including intellectual and executive functioning skills as well as disease-specific behaviors such as checking blood sugar levels or following medically tailored diet plans. The guidelines describe the role that psychologists can play to assess whether patients are ready and provide extra support when they need to work on their skills. “Two of the things our field does really well are assessment and intervention development,” Schwartz said. “As psychologists, we can be involved in setting up an infrastructure and standardized protocol to assess readiness for transition over time, then using that assessment to identify targets for intervention.”

Schwartz and her colleagues developed a framework to support this work, the Social-Ecological Model of Adolescent and Young Adult Readiness for Transition (SMART) framework, which they validated in a group of adolescent and young adult survivors of childhood cancer (JAMA Pediatrics, Vol. 167, No. 10, 2013opens in new window). The model considers preexisting factors, such as medical status, insurance access, and sociodemographic factors, as well as more modifiable elements such as self-efficacy, expectations, emotions, and knowledge. More recently, the researchers updated the model to include additional factors to improve health equity and validated the model in a population of adolescents and young adults with sickle cell disease (JAMA Pediatrics, Vol. 178, No. 3, 2024opens in new window). The model can be a guiding framework for assessing transition readiness, especially among youth who are experiencing health disparities.

While SMART offers one framework, there is no one right way to measure transition readiness, Schwartz said. Different health systems and even different departments within a single hospital may have their own protocols for measuring readiness and intervening where needed. What is important, she added, is having a clear system in place to pinpoint and modify factors that interfere with successful transitions.

One patient, for instance, might not have the know-how to manage their medical care yet. Another might know what they need to do but struggle with high anxiety about leaving their pediatric providers behind. For others, the problem might be that they are butting heads with their parents because of differing expectations around moving to adult medical care. In each case, psychologists can determine the sticking points in need of extra attention. “Once we identify those targets, we can facilitate the necessary interventions and also serve as a liaison between the family and the medical team to share concerns about any targets in need of intervention,” Schwartz said.

There’s no perfect age for transitioning to adult care, experts say. For some patients, the shift may come in the late teens. Others may not be ready until their early 20s. Psychologists can help families identify when the time is right to cross the bridge to adult care, then support them on their way. The guidelines describe ways that psychologists can aid in the transfer process—by addressing patient concerns, engaging families in shared health care decision-making, and facilitating coordination between pediatric and adult providers. “It can be really challenging to make the transition when a child has a strong relationship with their pediatric providers. And it can feel really challenging to communicate years of knowledge and complex medical information to someone new,” Cooke said.

Psychologists can help with a warm handoff, consulting with and educating adult providers to help them better understand the patient’s pediatric experience to improve the continuity of care. They can also work with patients to support their health and health care behaviors and address mental health challenges such as anxiety or depression that arise. When a patient’s self-management skills are still developing, a psychologist might even advocate for delaying transfer to adult care for a set period while they take active steps to improve those skills.

Throughout these activities, members of the transition team should pay careful attention to cultural and social contexts and barriers, Cooke said. The ideal degree to which parents are involved in the care of their young adult child, for instance, could vary significantly from culture to culture and family to family. And some patients may face health care barriers that make the transition process uniquely challenging. Factors such as health literacy, transportation access, insurance coverage, and access to quality health care can all affect transition outcomes (McKenzie, R. B., et al., Population Health Management, Vol. 22, No. 1, 2019opens in new window). “The new guidelines outline the ideal best practices—but a family will not be able to benefit from those best practices if they are experiencing barriers within the health care system,” Cooke noted.

Psychologists can help identify and address the risks and identify areas of resilience. For a patient facing challenges with health literacy, for instance, strong family support can help bridge any gaps in understanding. Psychology professionals can also help address health care inequities in their institutions, according to the task force members. “We can help to combat stigma and bias through things like the use of inclusive language—with families and in institutional communications—and addressing institutional policies that may contribute to health care inequities,” Cooke said.

The guidelines recommend psychologists gather feedback on the transition process from patients, families, and providers once young patients have moved into their adult “medical home” to ensure that any barriers are addressed and eventually aid other families going through this process, Mulchan said.

“We have done so much from the medical side of things to ensure these children survive to adulthood,” Mulchan added. “We shouldn’t neglect all the things we need to do from a psychosocial standpoint to help these patients have the skills, the knowledge, and the readiness to effectively continue managing their health.”