Because of their increased risk for late effects, the ability of childhood survivors to transition to and remain engaged in adult healthcare is of utmost importance.
In a significant addition to the limited body of research and evidence-based guidance for successful transition, a multidisciplinary team led by The Children’s Hospital of Philadelphia has created SMART — a social-ecological model of adolescent and young adult readiness to transition.
Psychologist Lisa Schwartz, PhD, along with a colleague in CHOP’s Division of Adolescent Medicine, first developed SMART. She has subsequently built a program of research with her adolescent medicine colleague, a survivorship oncologist, nurse practitioner, nurse researcher, and other psychologists to validate the model and develop a companion measure of transition readiness.
SMART provides a framework to assist clinicians in assessing and tracking the readiness of the adolescent or young adult (AYA) patient to transfer care. Parent and provider readiness are also acknowledged in SMART. “While most research on transition focuses on patient disease knowledge and skills, SMART considers indicators of transition readiness beyond the patient-centered variables of disease knowledge and skills, attends to multiple stakeholder perspectives, and distinguishes between variables more or less amenable to change,” Schwartz says.
The model identifies four objective components: socio-demographics/culture, access/insurance, medical status and risk, and neurocognition/IQ. It also identifies more modifiable subjective components to target to improve transition readiness and ensure successful transfer of care. For patient, parent, and provider, components include knowledge, skills/self-efficacy, beliefs/expectations, goals/motivation, relationships/communication and psychosocial/emotions. An additional variable, developmental maturity, applies only to the patient.
To confirm that it reflects factors influencing transition readiness, Schwartz’s team reviewed the model with 14 patients, 18 parents, and 10 providers in focus groups and interviews. Of interest, the factor most frequently identified as “most important” by patients was access/insurance; by parents, skills/self-efficacy; and by providers, relationships/communication.
By identifying variables for providers to target in assessment and planning, SMART is informing the development of a measure of transition readiness and can also inform interventions that target all aspects of transition readiness.
SMART is just one example of AYA-centered research efforts at CHOP. Completed or in progress are a 5-year retrospective of predictors of engagement in follow-up care after AYA patients move off active treatment for cancer; a study of cancer, treatment, and family predictors of quality of life of AYA survivors of childhood brain tumors; a study of improving treatment adherence by promoting family problem-solving skills; an effort to identify barriers keeping AYA patients from taking part in clinical trials; and a study of a texting intervention to promote continued engagement in care among AYA patients ending treatment.
"Adolescents and young adults are a unique population, and many of their care needs are different from those of younger cancer patients,” says Lamia Barakat, PhD, director of psychosocial services for the Division of Oncology and chief, Section of Behavioral Oncology, Center for Childhood Cancer Research. “We’re committed to improving our understanding and developing tools to help them during care and into survivorship.”