FormalPara Key Summary Points

Why carry out this study?

In type 1 diabetes treatment management, transition of children from paediatric clinic to adult diabetes care presents unique challenges and barriers.

Studies focused on diabetes monitoring and patient satisfaction during the transition from paediatric to adult diabetes care are limited in France.

The current survey was conducted to describe the transition process from paediatric to adult diabetes care from a participant’s perspective and to further measure and understand participants’ experiences, such as personal issues, satisfaction and their apprehension during the transition.

What was learned from the study?

The current study identified that for most participants, the transition was triggered by a joint decision with the paediatrician and participant before the final move from the paediatric clinic. Personal concerns during the transition were significantly associated with new or unexpected issues following the transition.

Meeting the adult diabetology medical team and initiating the transition process by having diabetes under control were the most important aspects for a successful transition.

Introduction

Type 1 diabetes (T1D) remains a global public health concern and is the most common metabolic disorder in children and adolescents. A recent modelling analysis estimated that there were 8.4 million people living with T1D at the global level in 2021 and this number is predicted to increase between 13.5 and 17.4 million by 2040 [1]. In addition, 1.5 million (18%) of individuals were less than 20 years of age, highlighting that T1D is one of the most common chronic diseases in children and adolescents, affecting more than 1 out of every 500 youths in the USA and other countries [1, 2]. Hence, for effective management of T1D, children require cooperation and regular support from parents and healthcare professionals (HCPs) [3].

In children and adolescents with T1D, transition from paediatric to adult diabetes care (TPA) can represent a major challenge to optimal care. Transition healthcare is defined as the ‘planned purposeful movement of the adolescent from child-centred to adult-orientated care’ [4]. The optimal TPA process should be uninterrupted, well-coordinated and comprehensive, yet sufficiently flexible to consider the psychological and social development of the adolescent, the complexity of the health problems for the family and their readiness for transition [5]. Although TPA among people with T1D is a day-to-day activity in clinical context, data are scarce on this topic. Recent studies showed that glycaemic control declines significantly among people with T1D in the age range of 18–25 years, i.e. during transition to adult care, with only 14% of participants meeting glycated haemoglobin (HbA1c) targets [6]. Further, in comparison with younger and older cohorts, late adolescents and early emerging adults also exhibit poorer diabetes management habits, which include declining clinic attendance and early signs of long-term problems [7]. It is important to highlight that adolescents and young adults face a high proportion of acute and chronic medical conditions and concerns, which makes the ongoing access to high-quality medical care necessary for this age group. In addition to potential treatment adherence challenges among adolescents related to decreased parental involvement in diabetes management, the achievement of optimal metabolic control is hampered by hormonal changes in this age group, which further causes transient increase in insulin resistance and corresponding insulin requirements to maintain euglycaemia [8].

Research have indicated the need for a more formal, structured transition process for adolescents with diabetes, as a helpful way to support participants’ TPA [6]. According to the existing literature, planned transition care programmes could enhance patient satisfaction, visit attendance rates and glycaemic control in young adults with T1D [9]. However, findings suggest that clinical care may be disrupted by the shift from paediatric to adult-focused healthcare, which could also result in inadequate glycaemic control [10]. Maintaining a consistent relationship with a diabetes care provider across adolescence and young adulthood is required to provide the frequent monitoring necessary to minimise diabetes-related complications. However, studies focusing on these aspects in people with T1D living in France are limited. Hence, the current survey aimed to understand the experience of people living with T1D during TPA through an online questionnaire.

Methods

Survey Design and Participants

This was an observational, cross-sectional online survey. An online questionnaire was presented to people with T1D in France on a global online participant community platform. The questionnaire was developed by the survey sponsor and a scientific advisory board including paediatric and adult diabetologists. Three patients meeting inclusion criteria contributed to the development and validation of the questionnaire using a cognitive debriefing approach. People registered on the online T1D community in France were invited to participate in the survey via email or direct messages through the platform.

The survey was conducted online from 1 July 2022 to 26 August 2022. Participants were included in the survey if they were aged between 18 and 30 years, living in France, self-reported as T1D diagnosed by an HCP and had experienced TPA for more than 6 months. All participants provided electronic informed consent prior to their participation in the survey and had given their informed consent to the collection, processing and storage of their personal and health data. The survey was conducted online, and no HCPs were involved in participant recruitment. The survey identified and complied with the national regulations relating to ‘patients satisfaction surveys’ and no ethics committee evaluation was required. The questionnaire used in this survey is provided in Appendix I – Supplementary Document S1.

Objectives

The main objectives of the survey were to describe the transition process from paediatric to adult diabetes care from a participant’s perspective and to further measure and understand participants’ experiences, such as personal issues, satisfaction and their apprehension during the transition.

Survey Endpoints

The survey assessed participants’ perspectives on the impact of TPA process with respect to their relationship with HCPs, self-care, diabetes management, emotional and psychosocial concerns and the roles of supportive networks. The survey evaluated personal issues including fragilities of the family unit, first departure from family home, life challenge, denial of diabetes, eating disorders, psychological disorders, school or professional failure, stress related to schooling or work etc. and patients’ satisfaction with the transition process.

Data Analyses

The term transition used in the survey was defined as ‘an organised and coordinated process of moving a participant, usually living with a chronic disease, from paediatric care to an adult healthcare system’. The survey included qualitative and quantitative variables; crossovers were developed on the basis of sample size and considering their relevance to best describe the course of transition among the participants. Analysis was done by use of parametric (analysis of variance (ANOVA) and Student test) and non-parametric tests (Kruskal–Wallis, Mann–Whitney and chi-squared test) accordingly. Correlation analysis was done to measure the strength and direction of a linear relationship between two variables (− 1 [strong reverse relationship] to + 1 [strong positive relationship]; 0 [no linear relationship]). Continuous variables data were expressed as means (± standard deviations) and categorical variables data were expressed as numbers and percentages. The central limit theorem was used to calculate the mean sample size and standard deviation. Thematic qualitative analysis was performed on respondents’ answers to the questionnaire. In order to best describe the course of transition among the participants, the manuscript depicts the most relevant results. A P value less than 0.05 was considered statistically significant using a chi-squared test.

Results

Participant Disposition

A total of 104 responders were included in the survey; of these, 64 (61.5%) participants were female. The mean age was 24.4 years (95% CI 23.8–25.0), with 53 (51%) participants 18–24 years old and 51 (49%) 25–30 years old. The mean age at the time of T1D diagnosis was 11.9 years (95% CI 10.9–12.9) and the mean time elapsed since diagnosis was 12.5 years (95% CI 11.2–13.8). The mean age at the time of transition was 18.4 years (95% CI 17.8–18.9) with 61 (59%) participants ≤ 18 years and 43 (41%) participants > 18 years of age. The mean time elapsed since transition was 6.0 years (95% CI 5.3–6.8) and the time since transition ranged between 6 months and 5 years in 49 (47%) participants and was more than 5 years in 55 (53%) participants (Table 1).

Table 1 Baseline characteristics
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Regarding site for care, 77 (74%) participants were followed in public hospitals before transition. For 58 (56%) participants, the first adult diabetology department was in the same institution. Overall, 65% of participants had consulted a diabetologist after the transition; a general practitioner, dietitian, pharmacist, ophthalmologist, nurse, podiatrist and psychologist/psychiatrist were consulted by smaller proportions of participants.

Transition-Triggering Event

The main event that triggered the transition was a jointly made decision with the paediatrician in 36% of participants; the remaining participants initiated the transition because of reasons such as the decision was made by the paediatrician alone, wish of parents, own wish, relocation, and paediatrician relocation or retirement and miscellaneous. Moreover, the transition started naturally at the age of 18 years in 30% of participants and lasted mostly between 2 and 6 months (33%) or less than 2 months (28%). Overall, for 72% of transitions, the adult diabetologists were consulted within a short period before the final departure from the paediatric department. The participants declared that they had one or more consultations with the adult diabetologist (47%) and/or with the paramedical team (specialized nurse, dietitian, psychologist, etc.) (45%).

Insulin Treatment Regimen Before and After Transition

Among the responders, 49% changed their insulin treatment regimen after the transition. The insulin treatment regimen with use of classic injectable pens decreased with an increase in the use of the latest-generation devices.

Treatment and Glucose Monitoring

Six months after the transition, participants tended to change their insulin administration device from the classic pen (47 to 29%) and to one of the latest-generation devices (6 to 28%) and their glucose monitoring from self-monitoring of blood glucose (48 to 32%) to intermittently scanned continuous glucose monitoring (is-CGM) (14 to 30%). However, from national care insurance coverage of is-CGM in 2017, much more participants in paediatrics had used this monitoring mode prior to transition (9% transition before 2017 vs. 21% transition after 2017). Participants who changed treatment soon after transition were more likely to change their glucose monitoring device as well versus participants who had no change of treatment (78% vs. 34%; P < 0.001).

Participant Insights: Personal Issues Faced During Transition

Almost three quarters of participants declared having experienced personal issues at the time of transition (mean of the number of issues 1.6). Moreover, one out of four participants mentioned the stress was related to school. Overall, female participants experienced slightly more issues than male participants (2.3 vs. 2.0 average mean). For the majority of participants (93%), the transition did not delay or disrupt a life plan, while for the rest of the participants (7%), the main life projects impacted were studies and travels.

Diabetes Monitoring Issues After Transition

Of the 76 participants who experienced personal issues at the time of transition, 74% experienced at least one issue with their diabetes management in the months following the transition. Personal concerns during the transition were significantly associated with new or unexpected issues in the months following the transition (P < 0.001) as presented in Fig. 1.

Fig. 1
figure 1

Diabetes monitoring difficulties after transition (n = 104)

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Overall, 61% of participants experienced new or unexpected issues in monitoring their diabetes after the transition. Twenty percent of all respondents identified two or more issues, which commonly included feeling alone (29%) and loss of motivation (25%) (Fig. 2).

Fig. 2
figure 2

Diabetes monitoring difficulties after transition in overall population (n = 104)

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Among participants who transitioned to a different institution, the feeling of loneliness after the transition was reported more often (43%) than other issues. Also, respondents who had no issues in the months following their transition reported higher mean scores for diabetes team expertise (8.8 vs. 7.6; P < 0.001), diabetes team support (8.1 vs. 7.3; P = 0.001) and relatives’ support (8.7 vs. 7.9; P < 0.001) than respondents who had issues.

Diabetes Imbalance After Transition

Overall, 56 (54%) participants did not experience any unexpected diabetes imbalance after transition. Further analysis revealed that, out of 44% of participants who experienced unusual diabetes imbalance after the transition, 8 (8%) were hospitalised because of unusual hypoglycaemia and 9 (9%) as a result of unusual hyperglycaemia, as shown in Fig. 3.

Fig. 3
figure 3

Diabetes imbalance after the transition (n = 104)

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Amongst participants who had one or more consultations with the diabetologists (n = 35), 17 (49%) did not experience any unexpected diabetes imbalance, while among participants who did not have any consultations with the diabetologists (n = 69), 24 (35%) did not experience any unexpected diabetes imbalance.

Participants who experienced personal issues during the transition were likely to remember having an unusual diabetes imbalance compared to those who did not experience personal issues (54% vs. 20%) in the months following the transition.

Respondents who had an unexpected diabetes imbalance gave a significantly lower score (7.6 vs. 8.5; P < 0.05) to the expertise of the adult diabetes team than those who did not have any diabetes imbalance.

Unmet Needs and Satisfaction

Overall, half of the participants who received information about transition did so from their medical team and half through other means. Overall, 17% of respondents wished they had information about diabetes management at work or school.

On average, participants used mean number of services (1.8) or tools to help them in their transition. The most used were apps (32%) and specialised websites (31%) in diabetes care. In total, 70% of respondents had a smooth transition or had no suggestions how to improve the transition process. The remaining participants (30%) identified support, good listening (8.6%) and communication between the paediatric and adult diabetes teams (5.7%) as the primary causes to improve the transition.

Participants’ Experience, Benefits and Main Concerns with the Transition

A quarter (24%) of respondents expected more autonomy from their transition. Half of the respondents (52%) expected no benefits (Table 2). The risk of less involvement of the medical team was the biggest concern of the participants about transition (ranked in top three by 43% of the respondents). The second most reported concern was having a different organisation and 10% had no apprehension (Fig. 4).

Table 2 Benefits of transition (n = 104)
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Fig. 4
figure 4

Participants’ main concerns about transition (n = 104)

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Satisfaction with the Transition

Overall, 41% reported that they were very satisfied, although some participants (8%) were rather dissatisfied with the way their transition was prepared. Participants who had a prepared transition (< 2 months or between 2 and 6 months) seemed to be more satisfied with their transition. Importantly, total satisfaction was reported in only 26% of those who reported at least one personal issue.

Key Aspects of the Transition

Meeting the adult diabetology medical team and initiating the transition process by having their diabetes under control were ranked as the two most important aspects for a successful transition by 40% and 38% participants, respectively. The main concern related to the transition was losing the benefit from relatives’ support throughout the process (14.4% of participants) (Fig. 5). Compared to participants who transitioned to another institution (47%), significantly more participants (66%) who transitioned in the same hospital believed that staying in the same hospital through transition was important (P < 0.001).

Fig. 5
figure 5

Aspects of transition from paediatric to adult diabetes care (n = 104)

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Discussion

For adolescents and young adults, the transition from paediatric to adult diabetology is an important step in controlling the risk of a break in the diabetes continuum of care. This includes participants’ self-management of diabetes, working with new adult care HCPs and managing concomitant psychosocial issues. In the present survey conducted in France, participant/family request was one of the reason for TPA. However, lack of adult specialists in T1D care and long-lasting therapeutic relationship with participant/family were the main impediments to transition of care. For an effective TPA, development of structured guidelines for transition remains an important factor. Further, the most important aspects for a smooth transition, such as meeting with the adult diabetology medical team prior to the departure from paediatrics, and the aspects most related to apprehension of the transition, such as an organisation different from adult diabetology compared to paediatrics, should be anticipated.

Participants in this survey reported unanticipated disparities between the adult and paediatric teams such as differences in follow-up establishments, healthcare professionals, insulin treatment regimens, blood glucose monitoring devices etc., as well as issues connected to insufficient diabetes follow-up in adult care similar to findings reported by Garvey et al. highlighting the shortcomings in the T1D transition process and the importance of a planned transition by paediatric clinics to adult care [11]. The type of adult care provided should be considered when evaluating studies that look at how transition affects glycaemic control. Studies that evaluated HbA1c pre- and post-transition from paediatric and adult clinics have mentioned that the clinics were located within the same healthcare system, which was beneficial for the management of diabetes [9]. Findings from the studies conducted by Helgeson et al. and Lotstein et al. found that compared with late transition or longer time in paediatric care, early transition from paediatric to adult care was associated with deterioration in glycaemic control [12,13,14]. Further, a 2008 study by Van Walleghem et al. [15] reported clinical outcomes with the Maestro Project, a systems navigator service for patients transitioning from paediatric to adult care. The study showed that although there was a marginal decrease in the participants continuing at least one medical visit per year before and after transition (95.3–89.1%), assistance from the Maestro project during transition was associated with a lower rate of dropout from adult care (11%) compared with those who enrolled after transition (40%).

A 2007 study by Weissberg-Benchell et al. suggested that families, participants and healthcare professionals can together create written transition plans 2 years prior to the actual intended transition. A UK study showed that using a two-stage transition process, first year in a combined transition clinic followed by transfer to young adult evening clinic, reduced HbA1c over 8 months [16]. A study conducted in Norway using semi-structured interviews showed that in contrast to paediatric care, young adults felt that adult care was less individualized and that they were not treated like whole individuals [17]. According to this study, the current protocols for transferring young adults from paediatric to adult care were not optimal, and hence, the individuals with diabetes were not well prepared for the transition [7, 17]. Moreover, it has been reported that young adults having T1D who were satisfied with their access to health services were likely to have a satisfying clinical outcome which was unrelated to HbA1c levels or with the routine clinical plans [18]. Moreover, during the first stage of early adolescence, there exists a lack of openness to suggestions for diabetes therapy and management. Whereas the second stage of the young adulthood (25–30-year-old) is frequently marked by an increasing awareness of the significance of aiming for improved glycaemic control and an openness to enhancing self-care practices [19, 20]. It is important to note that the formation of some lifelong habits and conduct may present opportunities for medical interventions.

The main strength of this survey was the development of the questionnaire by top experts of paediatric endocrinology and diabetology. The questionnaire was additionally validated by individuals with T1D. Moreover, the survey data were obtained from a large proportion of individuals with T1D in France. One of the key limitations was the declarative type of survey and responses were based on an online survey, which might have introduced bias in the survey. There might be a recall bias associated with the survey, wherein participants were more or less likely to recall information on transition depending on the duration post transition. However, such bias commonly occurs in systematic participants surveys. The current survey highlights the importance of implementing an individualised transition process, considering the psychological aspects and fragility of the adolescent person so that the person can regain satisfaction. Thus, support in the adult diabetes transition is necessary for the autonomous management of diabetes, while considering the existing resources.

Conclusions

The survey highlights the well-being of participants and their satisfaction with the provided transition services, which is critical for young adults with diabetes and their clinicians. Further, the findings suggest that bridging paediatric and adult care settings for participants with T1D is a crucial aspect in the management of diabetes, and consistent engagement with diabetes care throughout young adulthood will promote health and welfare for youth and help them prevent diabetes-related complications. Thus, a focus on an effective approach with a structured transition programme towards the transition from paediatric centre to adult diabetes care is required. Providing an individualised transition process highlighting the common problems and solutions regarding transition would be beneficial. Glycaemic control to prevent long-term complications and to maximise lifelong functioning is essential. Also, there is a need for continued training and identification of adult providers (or advocates) versed not only in the medical care but also in the psychosocial needs of the young adult with diabetes.