(241) Partnering with young adults with cystic fibrosis to collaborate on their transfer to adult care improves satisfaction with transition timing

Background: Limited data exists regarding preferred transition timing and no clinical guidelines have been established regarding the best time to transfer from pediatric to adult centered care. A single cystic fibrosis (CF) care center found that transition timing satisfaction was optimal for less than half of adolescents who transitioned to adult care based on age. [1] In response to this finding, the team began collaborating with young adults to choose a transition time based on their personal readiness and skill mastery instead of age. Skill mastery includes overall medication knowledge/self-management, completing solo visits during clinic visits, making/rescheduling appointments, and initiating medical communications. The aim of this study was to compare previous satisfaction levels with transition timing in young adults who moved to adult care when age determined transition timing vs. patient satisfaction with transition timing when determined by skill mastery and personal preference.

Methods: Survey data was collected from 3/1/2015 -3/1/2022. Participants met inclusion criteria if they had a diagnosis of CF, attended the CF care center, participated in the transition program, and had the ability to consent. Participants completed a transition survey with Likert-type and open-ended questions, which was used to gauge satisfaction with transition timing. Statistical analysis was performed using SPSS (version 28, IBM). Chi-squared and Mann Whitney test were used for analysis.

Results: The survey was completed by 129 people; 98 moved to adult care based on age and 31 based on collaboration with transition timing. Young adults who transferred to adult care after collaborating on transition timing were more likely to strongly agree that the age and timing they transitioned into adult care was just right for them when compared to those that transitioned based on age (4.52 ± 0.77 vs. 4.08 ± 1.03, p = .02). The age at transfer was 19.2 years on average when using age as the transfer vs. 20.1 years when collaboration was used. The number of young adults who endorsed that their transition timing to adult care was “just right” timing-wise rose from 50% to 77% (p< .05) once the team began collaborating on transition timing. Of note, after collaborating on transitioning timing, no young adult disagreed or strongly disagreed with the statement “The age and timing in which I transitioned to the adult program was just right for me”. Qualitative analysis of open ended responses also endorsed high satisfaction with collaboration as young adults prepared to transition as well as contentment with their’ chosen time for moving to adult care.

Conclusions: A single CF center chose to abandon age as the impetus to transition from pediatric to adult care in favor of active collaboration with young adults to partner on transition timing. This resulted in increased satisfaction with transition timing and fewer individuals who felt they would change their transition timing if they could do it all over again.

Acknowledgements:

References: [1] Middour-Oxler B, Bergman S, Blair S, Pendley S, Stecenko A, Hunt WR. Formal vs informal transition in adolescents with cystic fibrosis: A retrospective comparison of outcomes. J Ped Nurs. 2022; 62:177- 183. https://doi.org/10.1016/j.pedn.2021.06.004