(39) The Relationship Between Post-transfer Outcomes and Continuity of Recommended Care During Healthcare Transition in Cystic Fibrosis

Background: During healthcare transition adolescents and young adults (AYAs) with cystic fibrosis (CF) are at risk for discontinuity of recommended care (gaps in care). Despite efforts to improve transition, outcomes following transfer to adult care remain poorly understood. While biomedical (i.e., body mass index [BMI] and lung function) and behavioral outcomes (i.e., clinic attendance) are important indicators of successful transition for AYAs with CF, little research has explored the effect of gaps in care during transition on post-transfer outcomes. Therefore, the purpose of this study was to examine post-transfer biomedical and behavioral outcomes for AYAs at one academic medical center. We hypothesized that outcomes would be poorer for AYAs who experienced a gap in care >90 days (e.g., not maintaining recommended quarterly visits).

Methods: We analyzed 2008 to 2019 data from the CF Foundation Patient Registry. Patients who transferred from the pediatric to the adult CF clinic at one medical center were included; patients were excluded if a pediatric visit occurred after an adult visit or if patients transferred to a different adult CF clinic. Gap in care was measured as >90 days between the last pediatric outpatient visit and the first adult care outpatient visit. Variables of interest included demographic characteristics (sex, ethnicity), biomedical outcomes (lung function measured as Global Lung Initiative forced expiratory volume in 1 second % predicted [FEV1% pred], BMI) and behavioral outcomes (clinic attendance measured as number of annual visits). BMI and lung function measured at the annual review was used. AYAs with missing outcome data were excluded from analysis. Data were analyzed using descriptive statistics and paired T tests stratified by gap in care with SAS statistical software (Version 9.4).

Results: During 2008 to 2019, 49 AYAs transferred from pediatric to adult care (47% female, 25% Hispanic). The median days between pediatric and adult care was 194 days (IQR 156 days). Only a minority (14.3%; n=7) were seen for a first adult CF visit within 90 days with most AYAs (85.7%; n=42) experiencing a gap >90 days. Lung function was significantly lower in adult care compared to pediatric care for those with a gap >90 days compared to those without a gap in care. There were no changes in BMI or annual clinic visits for either group (Table 1).

Conclusions: In this sample, gaps in care >90 days during the transition period were associated with a decrease in lung function; maintenance of recommended quarterly visits may support preservation of lung function during transition. We recommend that future research develop and test interventions to decrease gaps in care. In addition, analysis of larger data sets followed over longer time periods may help determine if lost lung function is regained as well as the effect of recent CF modulator therapies on post-transfer outcomes. Limitations of this study include a small sample size with only 1 year of follow up data, exclusion of patients who transferred to a different adult center and missing outcome data.

Acknowledgements: The authors would like to thank the Cystic Fibrosis Foundation for the use of CF Foundation Patient Registry data to conduct this study. Additionally, we would like to thank the patients, care providers, and clinic coordinators at CF centers throughout the United States for their contributions to the CF Foundation Patient Registry. This work was supported by the National Institute of Nursing Research [1F31NR020141-01].

References: