#NACFC2016 – Structure Can Ease Stress of Moving from Youth to Adult CF Care

A transition from youth to adult cystic fibrosis (CF) care needs to be guided by formal programs to maximize patient satisfaction and health outcomes. For successful transitions, skills essential to managing independent adult care also need to be developed, and assessing such skills before attempting a transfer would be wise.

The “Transition: Trials, Tribulations & Triumphs” symposium at the 30th Annual North American Cystic Fibrosis Conference (NACFC), focused on the readiness of youth CF patients to move to adult care.

In the talk, “Progression of an Established CF Transition Program,” Samya Nasr, MD, with the University of Michigan Health System, pointed out that if a transfer is not done properly, a patient’s future health, continuity of care, and adherence to medications could be affected.

Nasr described a formal transition program at the University of Michigan and the quality improvement it has gone through. The transition process used in the clinic is usually introduced to patients and families at the first center visit, and then discussed again when a patient reaches the early teens.

When a patient is ready, often between 18 and 21 years of age, an adult pulmonologist meets the patient and family at the pediatric clinic, accompanied by the pediatric pulmonologist. The process can be repeated up to three times until the patient is ready to make the move. A tour of adult care facilities is also offered.

The program, established in 1980, has gone through two revisions to meet patient expectations and improve satisfaction — the latest one in 2010.

Evaluating the program, Nasr found that the transition is complicated by the fact that it coincides with a period of life that is often stressful for all teenagers and young adults.

Although the use of structured transitions programs did not appear to lower the patient anxiety, it did seem to improve satisfaction, perceived health status, and independence. The evaluation also found that it is important to consider patient’s opinions on a suitable time to transfer.

Particularly, patients thought it helpful to meet the adult pulmonologist at the pediatric clinic, and appreciated having a social worker help with the transition.

Valerie Lapp, PhD, from Orlando Health focused particularly on how perceptions of readiness to transition to adult CF care is related to age and certain self-care skills in her talk, “Perceived Readiness to Transition to Adult Health Care for Youth with CF & Congruence with Their Caregivers Views.”

As self-management of CF improves outcomes and quality of life for patients, such skills need to be developed for an adolescent to successfully transition to adult care.

Lapp focused on five self-care activities that are particularly crucial for transitions: managing medications, keeping appointments, tracking health issues, talking with healthcare providers, and managing daily activities.

The study recruited 58 adolescents with CF, ages 14-22, and 52 caregivers. Researchers used the Transition Readiness Assessment Questionnaire (TRAQ) or a version of the questionnaire adapted to caregivers.

The study showed that age is associated to all five skills. Young patients scored their perceived skills higher than their caregivers. Most young patients stated that they were contemplating or wanted to learn more about medication management, appointment keeping, and tracking health issues.

This shows that, at an age where adolescents are perceived to be close to a transfer, they are still only thinking of learning skills needed for a successful transition. The analysis also showed that these skills were only being mastered among patients nearing adulthood.

When it came to talking with care providers and managing daily activities, most patients felt they already mastered such skills.

Lapp also mentioned that anecdotal comments from caregivers suggested that many had not considered their role in fostering the skills needed for a successful transition.

These findings highlight the importance of beginning transition discussions and skills evaluation in young CF patients at an early age, and incorporating caregivers’ perception into the process.