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

Abstract

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.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Emerging adults with chronic conditions face vulnerability during their transition to adulthood and transfer to adult care, but few studies exist on aspects related to transition and transfer, and how these associate with other relevant variables. The selection of person-centered instruments measuring emerging adults’ experiences of care prior to, during, and after transfer is also scarce.

WHAT THIS STUDY ADDS

• During transition and transfer preparation, emerging adults with type 1 diabetes regarded the healthcare-provider communication as satisfactory while fewer felt sufficiently prepared for the transition and transfer processes. Men reported better perceived preparation compared with women. Positive experiences from transitional care were associated with a higher level of empowerment, diabetes self-efficacy, and satisfaction with the healthcare climate in adult care.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• Gathering information about perceptions of existing transition and transfer healthcare practices among emerging adults with chronic conditions may play a role in better meeting their needs when planning for future adaptation of care during transition and transfer.

Introduction

Type 1 diabetes mellitus (T1D) is one of the most common chronic conditions among children and adolescents.¹ Achieving satisfactory glycemic stability is crucial to prevent short- and long-term complications, making self-management the foundation of diabetes care and mastery. Emerging adults with T1D face vulnerability during their transition to adulthood and transfer to adult care. This is reflected in adverse glycemic stability, lapses in care, and diabetes-related hospitalizations, potentially leading to long-term complications in adult life.2,4 Furthermore, this stage of life, encompassing adolescence (10–18 years), emerging adulthood (18–25 years) and young adulthood (25 years-early 30s), poses physical, psychological, and social challenges related to normative life transitions.⁵ Emerging adults with a chronic condition also face added concerns, such as medical treatment, self-management and physical or treatment-related restrictions.^{3 4}

In healthcare, transition of care denotes the continuous, complex process during which adolescents and emerging adults take over the responsibility of their own health and care, while transfer of care stands for the plain, physical movement from pediatric to adult care settings.⁶ Regardless of chronic condition, investigating and improving emerging adults’ transition readiness and experiences of the transition and transfer is crucial.^{7 8} Facilitating transition preparation, disease-related knowledge acquisition, self-management, and follow-up has proved to have a positive impact on both transition readiness and experiences.⁹ In addition, there has been a growing voice among adolescents and emerging adults highlighting the shortcomings of healthcare services in meeting their needs. Particularly those with chronic conditions stress the significance of a healthcare environment that is youth-friendly and prioritizes availability, confidentiality, acceptability, and personalized treatment. Moreover, adequate preparation for both transition and transfer is emphasized.^{8 10} Even though research in the area is incoherent and consensus on best practice is still lacking, studies repeatedly indicate that transitional care interventions such as structured transition programs, transition coordinators, telemedicine or other types of multidisciplinary efforts all seem to have positive impact on outcomes such as healthcare satisfaction, transition readiness, self-reported well-being, and care utilization in comparison with usual care.11,13 In summary, efforts to assess and improve transitional care are urgent.

Closely connected to the appeal for holistic healthcare services attuned to individual requirements and abilities is the concept of person-centered care (PCC), which has gained ground since the 1950s. PCC emphasizes partnership between patients and professionals, thus involving patients in the planning and implementation of their care. This leads to improved patient satisfaction, symptom relief, self-efficacy and quality of life, as well as reduced healthcare costs and rehospitalizations.^{14 15} Measuring patients’ self-reported experiences (PREM) and outcomes has become increasingly requested in healthcare.^{16 17} When evaluating transitional care, it is particularly important to explore emerging adults’ experiences of the healthcare services provided during transition to adulthood and transfer to adult care. The level of person-centeredness in transitional care has proved to be highly correlated to both positive transfer experiences and higher transfer satisfaction.⁸ Still, studies repeatedly reveal unsatisfactory person-centeredness during transition and transfer in terms of insufficient attention given to non-medical topics and emerging adults’ individual priorities with regard to disease management.^{18 19} Moreover, the selection of person-centered instruments measuring emerging adults’ experiences prior to, during, and after transfer is scarce.^{7 8}

All in all, there are important knowledge gaps regarding emerging adults’ reception and experiences of existing transition and transfer healthcare practices, as well as regarding requested modifications of care to better meet their needs and requirements. The aims of this study therefore were to (1) describe the experiences of emerging adults with T1D regarding transitional care before transfer to adult diabetes care and (2) explore potential correlates of these experiences.

Research design and methods

Study design, participants and procedure

A cross-sectional study including emerging adults with T1D was performed at eight public Swedish adult diabetes outpatient clinics. Since data was gathered post-transfer, with a focus on the transition and transfer preparation during the last years of care in the pediatric care setting, participants were required to have had the diagnosis for long enough time to have experiences of this preparation phase and gained some experience from the adult clinic. Therefore, inclusion criteria were written and spoken Swedish literacy, at least 4 years diabetes duration, and at least two completed visits at the adult diabetes clinic. According to the financial allocation of the Swedish healthcare budget, transfer to adult care occurs at 18 years, with few exceptions in unique situations. There is no other formal national transfer and transition policy. However, a referral from pediatric to adult care provider is part of clinical practice. Up to the age of 18, healthcare is free of charge, and in adult healthcare, there is a fixed fee paid by the patient.

Eligible participants identified through patient lists were contacted by the first author via postal letter followed by SMS/phone call (n=357). The letters included study information and a consent form, which responders were asked to fill out with their mail addresses for subsequent distribution of the web-based questionnaire. For participants responding via phone call or SMS, email adresses were collected orally or by SMS and consent for participation could be confirmed at the beginning of the questionnaire. Data was collected between December 2021 and August 2022 using REDCap (Research Electronic Data Capture), a web-based application for data gathering and storage.²⁰ Two SMS reminders were sent to all initial non-responders, while those who had consented to participation but never completed the questionnaire received six automatic email reminders before being classified as “non-responders” on absence of response. In the final sample, 162 emerging adults were included, corresponding to a response rate of 45%. No information about reasons for not participating was collected.

Variables

Outcome measure

The primary outcome was transition and transfer experiences before transfer measured by TEXP-Q (Transitional care EXPeriences Questionnaire), a newly developed, 16-item questionnaire whose development and psychometric evaluation is described elsewhere.²¹ TEXP-Q measures patient-reported experiences of transition and transfer preparation before transfer to adult care and the extent to which transitional care reflects a person-centered approach. The questionnaire consists of 13 questions answered on a five-point Likert scale (“strongly disagree” to “strongly agree”), and three open-ended questions answered in free text. During psychometric evaluation, the 13 closed questions appeared to arrange into three latent factors: healthcare provider communication (questions 1–3), autonomy and participation (questions 4–9), and transition and transfer preparation (questions 10–13) (box 1). Initial Cronbach’s alpha for the complete instrument was 0.866, while it approximated to 0.8 for all factors respectively. The factor structure has not yet been confirmed by confirmatory factor analyses in other studies.

Box 1. TEXP-Q*.

Healthcare provider communication

1. My previous healthcare provider talked to me in a way that was easy to understand.

2. My previous healthcare provider listened to me carefully.

3. My previous healthcare provider respected how my customs and beliefs might affect my diabetes.

Autonomy and participation

• 4 1My previous healthcare provider and I discussed the realities of being a young person (ie, thoughts and challenges during this life phase).
• 4 2My previous healthcare provider offered me visits to the clinic without my parents/legal guardians.
• 4 3I could talk to my previous healthcare provider about sensitive or difficult issues (even when they had nothing to do with my diabetes).
• 4 4My previous healthcare provider and I worked together to develop my ability to autonomously take care of my health and well-being.
• 4 5My previous healthcare provider and I worked together to prepare for and plan my future (ie, education, employment, and relations).
• 4 6My previous healthcare provider and I discussed legal changes in privacy, decision-making, and consent that take place at age 18.

Transition and transfer preparation

• 10 1My previous healthcare provider and I worked together to prepare a written transition plan, with health-related goals that arose from my abilities and needs.
• 10 2I was involved in the planning of follow-up in adult care by identifying a new adult provider to transfer to.
• 10 3My previous healthcare provider involved me in summarizing my time in pediatric care before transfer.
• 10 4When it was time for transfer, I felt prepared to change to an adult healthcare provider.

Open-ended questions**

• 14 1What could your previous healthcare provider have done to facilitate your transfer to adult care?
• 14 2Some people need information about what type of societal support is available if you have diabetes. If this has been the case for you: What type of information did you get from your previous healthcare provider?
• 14 3How could the reception in adult care have been improved?

To consider each question’s relative contribution to the instrument score, weighed total and subscale scores were calculated. A higher score on both total scale level and subscale levels corresponds to more positive experiences of transition to adulthood and transfer to adult healthcare. On the total scale level, maximal range is 13–65, while the subscale ranges vary between 3 and 15 for healthcare provider communication, 6–30 for autonomy and participation, and 4–20 for transition and transfer preparation. Since the number of questions varied for each subscale, average scores were calculated (range 1–5) in order to differentiate between them, as well as between the subscales and the total scale.

Sample characteristics and potential correlates

Self-reported sex, age, living situation, education, occupation, and country of birth were collected, as well as diabetes duration, insulin administration (insulin pump, continuous subcutaneous insulin infusion, or treatment with multiple daily injections), and glucose monitoring method (self-monitoring of blood glucose, real-time continuous glucose monitoring (CGM) or intermittent glucose monitoring). Glycated hemoglobin (HbA1c) and time to follow-up (days between last visit in pediatric care and first visit in adult care) were obtained from medical records. Sex, HbA1c, and time to follow-up were chosen as potential correlates of TEXP-Q according to recommendations within the research area, while the remaining variables served to mirror representativeness of the sample.⁹ Additional variables considered to be of relevance for young people living with T1D during transition in life and transfer between healthcare settings are empowerment, the healthcare climate in adult care, and self-efficacy in relation to living with T1D. Thus, the following questionnaires were applied and subsequently used in the Spearman correlation calculations:

GYPES: Gothenburg Young Person Empowerment Scale, a generic, 15-item questionnaire developed and psychometrically evaluated.²² It measures empowerment in terms of knowledge and understanding, personal control, identity, shared decision-making, and ability to enable others, and targets adolescents and young adults with chronic conditions. Response alternatives consist of a five-point Likert scale (Cronbach’s alpha=0.858 for the overall scale and 0.609–0.858 for the subscales).

HCCQ: Healthcare Climate Questionnaire, initially established by Williams et al (alpha=0.95)²³ and translated to Swedish.²⁴ In the scope of this study, it was customized for emerging adults with T1D directing the questions towards the healthcare provided at the adult diabetes outpatient clinic.

SWE-DES-SF10: The Swedish short version of the full-length Swedish Diabetes Empowerment Scale.²⁵ The short version consists of 10 questions measuring psychosocial self-efficacy in relation to diabetes management in terms of goal achievement and overcoming barriers for goal achievement: self-awareness, stress management, and readiness to change. Answers are given on a 5-point Likert scale (alpha=0.91 for the total score and 0.91–0.68 for the four subscales).

Data analysis

All analyses were performed using IBM SPSS Statistics (V.28), while the correlogram was generated using the psych package in R.²⁶ Descriptive statistics were expressed in absolute numbers, percentages, medians and ranges, or means and SD. To account for the relative contribution of the TEXP items to the total score, as well as to each subscale score, weighted scores were calculated by multiplying the scaled score for each item to the factor loading of each item.²⁷ As mentioned, average scores were then calculated for each subscale, as well as for the total scale, to enable comparison and facilitate interpretability. Potential correlates of patient experiences from transition and transfer were explored by performing Spearman correlation calculations between TEXP and the other instruments, as well as multivariate linear regression analyses (enter method) for sex, HbA1c, and time to follow-up. Durbin-Watson statistics, variance inflation factor and normal probability plots (P-P-plots) were inspected to assure normality, independence of observations, linearity, homoscedasticity, and absence of collinearity. The Cohen criteria were applied to assess the strengths of the Spearman correlations, with correlation coefficients of 0.10, 0.30 and 0.50 denoting correlation magnitudes “small”, “medium” and “large” respectively.²⁸ p<0.05 was established as the level of significance during multivariate analyses. All tests were two-sided. The amount of missing data was evaluated for each variable and exceeded 5% only for GYPES and SWE-DES, whereby single mean imputation was adopted. Data were proved to be completely missing at random.

Results

Transition and transfer experiences

In total, 162 participants completed the questionnaire (48% women), corresponding to a response rate of 45%, with a mean age of 20.3 years, a mean HbA1c of 57.3 mmol/mol (SD 15.3) (7.2%), and a median time to follow-up in adult care of 68 days. For further background characteristics of the study sample, see table 1.

Table 1. Sociodemographic and clinical characteristics in 162 emerging adults with type 1 diabetes.

Age M (SD)*	20.3 (0.9)
Sex n (%)
Women	78 (48.1)
Men	80 (49.4)
Other	4 (2.5)
Born in Sweden n (%)
Yes	156 (96.3)
No	5 (3.1)
Current occupation n (%)
Employee	80 (49.4)
Student	60 (37.0)
Jobseeker	10 (6.2)
Parental leave	3 (1.9)
Sick leave	2 (1.2)
Other	6 (3.7)
Diabetes duration, years, Mdn (min–max) *	11 (4–20)
Insulin administration n (%)
Insulin pump	93 (58.5)
MDI†	66 (41.5)
Blood glucose monitoring n (%)
SMBG‡	8 (5.0)
rtCGM§	83 (51.9)
isCGM¶	69 (43.1)
HbA1c, mmol/mol, M (SD)*/Mdn (min–max)	57.3 (15.3)/55 (34–130)
Time to follow-up**, days, Mdn (min–max)	68 (0–253)

^*M=mean, Mdn=median.

^†Multiple daily injections.

^‡Self-monitoring of blood glucose.

^§Real-time continuous glucose monitoring.

^¶Intermittently scanned continuous glucose monitoring.

^**Number of days between last visit at the pediatric diabetes clinic and first visit at the adult diabetes clinic.

Using average scores, the maximum score of TEXP-Q was 5.0 for all scales. In the total sample, the mean score on total scale level was 3.6±0.7. Looking at subscales, the mean score was 4.5±0.7 for Healthcare provider Communication, 3.5±0.9 for Autonomy and Participation, and 3.0±1.1 for Transition and Transfer Preparation, respectively. With reference to the separate questions’ allocation of answers, overweight of positive responses (“mostly agree” or “strongly agree”) was observed for questions 1–7, while negative responses (“mostly disagree” or “strongly disagree”) were seen for questions 8–10 (figure 1).

Figure 1. Violin plots for transitional care experiences, total score and subscales. TEXP, Transitional care EXPeriences.

Correlates

In the total group, positive experiences from transition and transfer, corresponding to higher scores on TEXP-Q, were associated with higher level of empowerment measured by GYPES (rho 0.34, p<0.001), diabetes self-efficacy measured by SWE-DES (rho 0.31, p<0.001) and satisfaction with the healthcare climate in adult care measured by HCCQ (rho 0.30, p<0.001). As for the subscales, all three showed the same association pattern as the total scale, with significant, positive relationships between experiences of each subscale and higher level of empowerment, diabetes self-efficacy, and satisfaction with the healthcare climate in adult care (figure 2(a–d)). Multiple regression analyses showed that HbA1c and time to follow-up neither reached the significance level for the total scale, nor for any of the subscales, while sex proved to be significant only for the subscale transition and transfer preparation, with men feeling better prepared than women (table 2). The subscale healthcare provider communication did not meet the assumption of normality and was therefore not included in the analyses. The models’ explained variances were 1.1% for the total scale, 0.6% for autonomy and participation, and 6% for transition and transfer preparation.

Figure 2. Correlogram showing the associations between transitional care experiences total score, its subscales, and other patient-reported outcomes. GYPES, Gothenburg Young Person Empowerment Scale; HCCQ, Healthcare Climate Questionnaire; SWE-DES, Swedish Diabetes Empowerment Scale; TEXP, Transitional care EXPeriences.

Table 2. Multivariate analyses of potential correlates of TEXP-Q and its subscales (average scores).

Correlates	TEXP total		Autonomy/part		Transition/transf
	B (SE)	β	B (SE)	β	B (SE)	β
Sex	0.12 (0.12)	0.09	−0.12 (0.15)	−0.07	0.50 (0.17)	0.23
Time to follow-up	−0.00 (0.00)	−0.01	−0.00 (0.00)	−0.05	−0.00 (0.00)	−0.05
HbA1c	0.00 (0.00)	−0.05	0.00 (0.01)	0.01	0.00 (0.01)	0.00
R square	0.011		0.006		0.060
Level of significance
NS	< 0.05		< 0.01		< 0.001

HbA1c, glycated hemoglobin; TEXP-Q, Transitional care EXPeriences Questionnaire.

Discussion

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.319 29,31 Accordingly, mutual partnership between patients and professionals has been repeatedly underscored as central in research on both PCC and transitional care.2932,36 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.

Conclusion

Emerging adults with chronic conditions, such as T1D, call for person-centered transitional care attuned to their specific needs and requirements. 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 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 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, and when planning for improvement of care offered to emerging adults in preparation for transition and transfer.

Data availability statement

Data are available upon reasonable request.