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QOL most important objective during health care transition
The most important outcome for transitioning from pediatric to adolescent care reported by both health care transition experts and adolescents with special health care needs was quality of life, according to recent research in JAMA Pediatrics.
“Our study was designed to be inclusive of diverse input with a transparent selection process and clearly defined acceptable levels of consensus,” Cynthia Fair, LCSW, DrPH, of the department of human service studies at Elon University, and colleagues wrote. “The results highlight the importance of identifying meaningful elements that go beyond an individual’s readiness for [health care transition (HCT)].”
Cynthia Fair
The researchers conducted a three-stage study that included literature review, expert interviews and surveys from experts and adolescents with special health care needs, from January 2013 to July 2014. During stage one, the researchers reviewed expert-authored literature on HCT and interviewed 14 individuals, including two parents and one adolescent with special health care needs. The second stage consisted of surveying 117 experts at an HCT conference on what they believed made an HCT successful. During the final stage of the study, researchers surveyed 93 health care experts using a refined list of health care outcomes based on previous study data.
Study results showed that quality of life (QOL) was the highest rated outcome across all stages of the study, with broad agreement among experts.
The researchers refined study findings to a list of the 10 final outcomes; including individual outcomes, health care service outcomes and social outcomes:
- quality of life;
- understanding the characteristics of conditions and complications;
- knowledge of medication;
- self-management of condition;
- adherence to medication;
- understanding health insurance;
- attending medical appointments;
- having a medical home;
- avoidance of unnecessary hospitalization, and;
- having a social network of friends.
Fair and colleagues also noted that different individual outcomes were probably needed for teenagers with cognitive disabilities.
“Next, it will be necessary to define (both for research and clinical practice) and identify valid measures associated with each outcome,” Fair and colleagues wrote. “We hope that, by identifying and developing interventions targeting such proximate outcomes, we can improve the more distal patient-centered outcomes and ensure success broadly defined for adolescents and young adults with special health care needs.”
In an accompanying editorial, Peter Scal, MD, MPH, adjunct assistant professor of the division of general pediatrics and adolescent health at the University of Minnesota Medical School and School of Public Health, wrote that Fair and colleagues findings are remarkable for highlighting the importance of adolescent HCT in relation to other services.
“The article by Fair [and colleagues] provides pediatric health care professionals, researchers, and policymakers opportunity to reflect on the link between health care and the QOL of our adolescent patients,” Scal wrote. “Thirty years since the topic of health care transition was declared a pediatric and public health issue, considerable work remains to assure all youth, especially those with chronic conditions, receive the care they need to succeed as they enter adulthood. Pediatrics’ strong tradition of attending to children’s developmental needs can and should be leveraged to extend the same quality of care to our adolescent patients.” – by David Costill
Disclosure: The researchers report no relevant financial disclosures.
