SAN DIEGO – A dedicated care coordination intervention had a positive impact on facilitating the transition from pediatric to adult care among youth with special health care needs, a single-center randomized trial showed.
In an interview in advance of the annual meeting of the Pediatric Academic Societies, Dr. Lisa K. Tuchman said that coordination interventions in the existing literature have had mixed results. The current study is unique, she said, because it focuses on urban-based, publicly insured youth aged 16-22 years with special health care needs. “Other studies focus primarily on either pediatric or adult patients, not this in-between age group who is very vulnerable to dropping out of care,” explained Dr. Tuchman of the division of adolescent and young adult medicine at Children’s National Health System, Washington.
Dr. Lisa Tuchman
“Young adulthood is a time of many transitions; in this study we are focusing on transition between the pediatric and adult health care system – or when youth ‘age out’ of pediatric primary care and need to establish a new adult-oriented medical home – often in a different health system. This gap in care is known as a high-risk time for all youth, but especially for those youth with complex chronic conditions who may have adherence challenges, are navigating taking on more responsibility for their medical care, and often have a high rate of emergency department usage without a stable medical home.”
The current study also serves as a proof-of-effectiveness study. The health care transition recommendations published in Pediatrics in July 2011 are based on expert consensus, as evidence and data have been slow to evolve in this area (Pediatrics 2011;128:182-200). According to Dr. Tuchman, the current study is the first to demonstrate that these recommended guidelines improve quality and perception of care coordination, compared with a control group.
She and her colleagues recruited 210 patients aged 16-22 years from Children’s National Health System and randomly assigned them to a health care transition care coordination intervention (n = 105) or to a control group (n = 105).
The transition care coordination intervention consisted of implementing the Six Core Elements of Health Care Transition 2.0: transition policy, tracking and monitoring, transition readiness, planning, transfer of care, and completion. The last steps include communicating with the adult practice prior to planned transfer, confirming completion of transfer, and offering consultation assistance as needed.
The control group underwent usual care.
At baseline, and at 6 and 12 months, patients in both groups completed the Patient Assessment of Care for Chronic Conditions (PACIC), which assesses five domains (patient activation, delivery system design, goal setting, problem solving, and coordination/follow-up), as well as the Client Perceptions of Coordination Questionnaire (CPCQ), which assesses perception of patient-centered care and care coordination.
The study participants also completed a self-rating Likert scale (ranging from 1 to 10), a measurement of how ready they feel to transfer to adult care.
Dr. Tuchman reported that there were no statistically significant differences in PACIC, CPCQ, or readiness scores between the two groups at baseline. At 6 months, however, patients in the care coordination intervention group, compared with their counterparts in the control group, rated the quality of their chronic illness higher (P = .065) and reported receiving less conflicting advice from care providers (P = .018).
At 12 months, patients in the care coordination intervention group rated the following PACIC domains higher, compared with those in the control group: patient activation (P = .015), goal setting (P = .034), problem solving (P = .009), and coordination/follow-up (P = .016). Patients in the care coordination intervention group also reported more often receiving services they thought they needed (P = .03), were less confused about the role of providers (P = .012), and reported having more frequent discussions with providers about future care (P = .05).
The researchers observed no differences between the two groups in self-rating of transition readiness throughout the study period.
“[It was] surprising that this perceived higher quality care coordination and quality of care did not change perception of readiness to transfer from pediatrics to adult care,” Dr. Tuchman said. “This likely means that readiness is difficult to measure, and not related to care quality.”
She acknowledged certain limitations of the analysis, including the fact it “was a predominately African American, urban, publicly insured population of adolescents with special health care needs, and therefore may not be generalizable to other populations. But [it’s] still very important as Washington, D.C., has the fourth highest rate of unmet transition needs nationally.”
Maternal and Child Health, a bureau of the Department of Health and Human Services’ Health Resources and Services Administration, funded the study. Dr. Tuchman reported having no relevant financial disclosures.