PURPOSE: As the life expectancy for children with cystic fibrosis (CF) has steadily increased, so has the need to transition the care from pediatric to adult specialists. The Cystic Fibrosis Foundation (CFF) has mandated that CF centers provide age-appropriate CF care to maintain accreditation, with the goal that patients be transitioned by 21 years of age. In this study, we evaluated the experiences and opinions of patients in our adult CF center who went through a formal transition versus those who did not, in attempt to evaluate the overall process and to identify means for improvement.
METHODS: A questionnaire was given to adult CF patients at the University of Michigan Health System during a clinic visit or inpatient hospitalization to complete after consent was obtained. Inclusion criteria included diagnosis of CF in childhood, previous care in a pediatric center, and current participation in our adult CF clinic. Patients were questioned regarding their pediatric and adult CF care as well as the transition process.
RESULTS: A total of 91 patients completed the questionnaire. 44 out of 91 study patients went through a structured transition program. On average, patients participating in a structured transition process had higher satisfaction with both CF programs, perceived health status, and independence but no differences in their level of anxiety about transferring to the Adult program. These averages were statically significant for three groups: satisfaction before (p=0.01), perceived health status before (p= 0.01) and perceived health status after (p=0.04) transition. Patient opinions regarding when to transfer care were considered more often in patients who participated in a transition program (OR = 4.30, p = 0.02)
CONCLUSIONS: Although a structured transition program does not appear to decrease patient anxiety during this stressful period, it does appear to improve patient satisfaction, perceived health status, and independence.
CLINICAL IMPLICATIONS: These findings suggest that establishing a transition program could be important in optimizing patient health, continuity of care, improving adherence, and hopefully reducing rate of patients lost to follow-up.
DISCLOSURE: The following authors have nothing to disclose: Meghan Keaton, Sarah Chaudhry, Samya Nasr
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