Transition and transfer experiences and their correlates in emerging adults with type 1 diabetes.

Introduction: Emerging adults with chronic conditions, such as type 1 diabetes (T1D), face vulnerability during transition to adulthood and transfer to adult care. Facilitating transition preparation, disease-related knowledge acquisition, self-management, and follow-up has proved to improve transition readiness and experiences. Few studies exist on conditions related to emerging adults' transition and transfer, and how these associate with other relevant variables. The purpose of this study was to describe experiences of emerging adults with T1D regarding transitional care before transfer, and to explore potential correlates of these experiences.

Research design and methods: A cross-sectional study including 162 emerging adults with T1D was performed at eight Swedish adult diabetes clinics. The primary outcome was transition and transfer experiences measured by TEXP-Q (Transitional care EXPeriences Questionnaire)-a novel PREM (patient-reported experience measure). Correlations between TEXP-Q and sex, glycated hemoglobin, time to follow-up, empowerment, the healthcare climate in adult care, and diabetes self-efficacy were investigated.

Results: The mean average score of TEXP-Q (range 1-5) was 3.6±0.7 for the total scale, and for subscales: Healthcare-provider communication 4.5±0.7, autonomy and participation 3.5±0.9, and transition and transfer preparation 3.0±1.1. Sex proved to be significant only for transition and transfer preparation (p=0.004), demonstrating better perceived preparation among men compared with women. Positive experiences from transition and transfer were associated with higher level of empowerment (rho 0.34, p<0.001), diabetes self-efficacy (rho 0.32, p<0.001) and satisfaction with the healthcare climate in adult care (rho 0.36, p<0.001).

Conclusion: In this study we used a novel measure, TEXP-Q, to explore experiences of transitional care preparation among emerging adults with T1D. While most participants reported high satisfaction with the healthcare-provider communication, fewer reported feeling sufficiently prepared for the transition and transfer processes. The potential correlates investigated could not with conviction be regarded as important for the transition and transfer experiences. Using TEXP-Q in clinical practice may provide vital information when evaluating existing healthcare practices for emerging adults with T1D, and when planning for improvement of care offered to emerging adults in preparation for transition and transfer.