Implications of study findings
TEXP-Q, a newly developed, person-centered PREM, was applied to gather information about the experiences of transition and transfer preparation in pediatric diabetes care among emerging adults with T1D. Diabetes-related data, as well as three other instruments, were used to explore factors with hypothetical impact on the experiences. Analyses indicated an overall neutral or positive experience of transition and transfer preparation, though differentiating between the subscales showed unequal fulfillment of the different transition-related and transfer-related components (figure 1). While most participants seemed to regard the healthcare provider communication as satisfying, fewer reported feeling sufficiently prepared for the transition and transfer processes. Looking closer at the separate items, an overweight of positive responses was observed for items handling personal and respectful treatment attuned to emerging adults. In contrast, participants seemed more dissatisfied regarding factors related to becoming an adult, for example, feeling supported in their planning for the future, as well as knowing about legal changes when turning 18.
In line with updated research on transitional care for adolescents and emerging adults with chronic conditions, the three subscales of TEXP-Q mirror the cornerstones in recommendations for successful transition and transfer.3 29 Particularly stressed is the importance of respectful, involving, and developmentally adequate communication, which should be both attuned to adolescents and emerging adults, and acknowledge not only medical topics but also psychosocial aspects, health-related behaviors, and self-management skills.3 19 29–31 Accordingly, mutual partnership between patients and professionals has been repeatedly underscored as central in research on both PCC and transitional care.29 32–36 In detail, ISPAD (International Society for Pediatric and Adolescent Diabetes) Clinical Practice Consensus Guidelines underscore that transitional care should strive to encompass “transition preparation, education (including counselling on diabetes self-management, diabetes control and complications, differences between pediatric and adult systems, and health-care navigation and readiness assessment”, as well as documentation in a written transition plan [3, p.864]. Accordingly, adequate information about where to attend for adult care has proved to be a strong predictor for feeling prepared for transfer.37 With this in mind, it is noteworthy that the participants in our study reported a comparatively low level of participation, as well as of proper transition and transfer preparation, for example, in terms of grasping the legal changes occurring at the age of 18 or taking part in documentation via a written transition plan. In contrast with previous research,3 19 the participants in our study reported positive experiences with regard to healthcare provider communication while still in pediatric care. In particular, questions in the corresponding subscale healthcare provider communication cover aspects of being uniquely approached in accordance with one’s own developmental and psychosocial state, which is completely in line with up-to-date research, as mentioned above.
Moderate but significant associations were found on both total and subscale levels between positive experiences and higher level of empowerment, diabetes self-efficacy, and satisfaction with the healthcare climate in adult care. These connections could of course be bidirectional, denoting that individuals who enter the transitional phase with a higher level of self-efficacy may need less structure and feel more satisfied with the healthcare given. Correspondingly, a well-structured, empowering transitional phase may lead to higher self-perceived self-efficacy and empowerment post-transfer. Returning to both updated transitional care guidelines and the qualitative findings of Olsson et al,31 these associations could nevertheless be considered to mirror different aspects of the gradual, person-centered support to achieve independence that is emphasized by researchers, healthcare professionals, and emerging adults themselves.
Analyses only found one association between TEXP-Q and potential correlates in relation to sex and the subscale transition and transfer preparation, with men feeling better prepared than women. This is in line with the findings of Hodnekvam et al,37 as well as of van Staa and Sattoe.8 However, while Hodnekvam et al found an association between lower HbA1c and higher perceived transition and transfer preparation, no such relationship was discovered in our study. Likewise, van Staa and Sattoe8 found men’s higher self-reported transition readiness to be correlated to their comparatively higher levels of transfer satisfaction and positive transfer experiences, a connection that we could not prove in our study. Absence of these, as well as of other, significant associations, implies that additional, hitherto unknown phenomena might impact emerging adults’ experiences of transition and transfer preparation, both regarding sex differences and transitional care experiences in general. Moreover, associations were only investigated regarding experiences of pediatric care since experiences of adult care reception are not included in TEXP-Q. Future studies might, therefore, strive to include both perspectives to broaden the supply of potential correlates and thus improve understanding of factors that might facilitate or impede successful transition and transfer during the whole process.
In summary, our results support the hitherto frequently reported unfulfillment of multifaceted transition and transfer processes regarding emerging adults with T1D, and pinpoint specific aspects that are particularly ample or deficient. The potential correlates investigated could not with conviction be regarded as important facilitators or impeders of positive transition and transfer experiences. We suggest that using TEXP-Q in clinical practice may provide vital information when evaluating existing healthcare practices for emerging adults with T1D, for example when striving for increased patient involvement to promote mutual partnership. Looking at the separate questions gives information about which specific needs are better met, and which require improvement, according to the emerging adults themselves. TEXP-Q may also be useful when planning or evaluating interventions such as structured transition programs in preparing emerging adults for adult life and adult care.
Methodological considerations
Some limitations must be considered when interpreting the results of this study. As mentioned, TEXP-Q is a newly developed instrument, whose psychometric properties were examined in a recent study.21 Analyses proved good validity, reliability and responsiveness, while explorative factor analysis (EFA) suggested a three-factor solution applied in this study. Though still under debate, the factor structure from EFA is traditionally not considered confirmed until analyzed in a different sample.38 Since this is not the case with the present study, results should be interpreted as strong indicators of experience hierarchies and correlations rather than absolute numbers or proofs. Still, the information gathered provides important knowledge about definite understandings and opinions of this actual sample, as well as of potential associations both between different aspects of the transition and transfer experiences, and between these experiences and personal skills or external factors, such as sex and satisfaction with the healthcare climate in adult care. Another consideration is imputation, which, due to moderate but possibly complicating amounts of missing data, was applied to calculate the total scores of the questionnaires SWE-DES-10 and GYPES. Here, simple mean imputation instead of multiple imputation was adapted due to its comprehensiveness. Compared with multiple imputation, simple mean imputation is often considered sufficient but is always associated with an under-representation of uncertainty.39
Generality of the study results must also be considered in relation to representativeness of the study sample. Here, both our response rate and glucose control must be mentioned. A response rate of 45% might be considered too low to draw any general conclusions. However, this is completely in line with most studies on adolescents and emerging adults, who constitute a group that is particularly difficult to reach in research, thus making our study sample representative in that regard. In our sample, glucose control in terms of mean HbA1c was 57.3 mmol/mol (7.4 %), which is lower than 61.4 mmol/mol (7.8 %) in 2021 and 59.6 mmol/mol (7.6 %) in 2022 for the total young T1D population in Sweden.40 This indicates higher glycemic stability in the study group. Correspondingly, both the proportion of CGM and pump users were higher in our sample in comparison with national numbers for the same age ranges, with 95% using CGM in our sample to compare with 89% in Sweden in 2021 and 91% in 2022, and 58.5% being pump users in our sample to compare with 52% in 2021 and 57% in 2022 in Sweden, respectively. Another limitation is diversity, whereby only five participants in our study were born outside Sweden. We know from recent research that sociodemographic factors such as country of origin and parents’ educational status have an impact on glycemic variability on group level,41 which probably applies to transitional care experiences as well. Since Swedish literacy was chosen as an inclusion criterion, it excludes perspectives from outside the native Swedish and Swedish-speaking community. For such individuals, living with T1D and the reception of transition and transfer practices may or may not be substantially affected. Consequently, the transferability of this study’s findings to other settings and conditions is impeded. Moreover, this study only included emerging adults who, at the time of measurement, had made it to adult care, while those who still had not succeeded in transferring from the pediatric side were never heard, thus possibly leaving out the perspectives of those least prepared or most vulnerable. Future studies should focus on broader inclusion of emerging adults with different countries of origin, with different chronic conditions, and if possible, those who did not make it to adult care. To broaden the perspectives even more, key stakeholders during the transitional phase such as parents/caregivers, healthcare professionals, and policy makers must of course also be present. Last, there is a legitimate call for comprehensive reporting of sociodemographic, socioeconomic, and psychosocial background variables in research in this area to enable comparison and transferability of study results and intervention protocols.11 Even though we include a number of such variables, we still lack a full range of information to describe our study sample in better detail.
Even though some associations were observed, the correlations were moderate, and the models’ explained variances were only 6% at the very most. Likewise, the associations’ directions could not be determined due to the cross-sectional design. Investigating other potential correlates of transition and transfer experiences should consequently be the focus of future research, most favorably with study designs that reveal correlation directions.
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