The PTC relies on a holistic approach to care delivery for adolescents with CC and adopts most of the elements of the transition theoretical framework [24, 25], inspired by the Chronic Care Model [26]: youth-centered and strength-based focus, emphasis on self-determination and self-management, acknowledgment of individual differences and complexities, and recognition of vulnerabilities, cultural beliefs and socioeconomic disparities. This model of dedicated consultations, assessing transition readiness and identifying tailored and negotiated actions for transition preparation, irrespective of the adolescent’s CC, is a first in France and, to our knowledge, very innovative internationally. The PTC is implemented by experts in adolescent medicine occupying an independent but complementary position with regard to the RHCP. One experience in neurodevelopmental conditions bears some similarities [27], but our research underlines the invariable points shared by all CC and highlights the relevance of a disease-neutral intervention.
First, the PTC offers adolescents an appreciated opportunity to step back, review and speak freely about their history with CC, how they have arrived at their present point and how they see themselves in the future. This helps them analyze their strengths and barriers to transition success [7]: CC self-management skills, feeling of self-efficacy, trust in adult healthcare and perceived social support. The PTC report gives the RHCP a comprehensive transition planning tool to tailor the transition preparation with a deeper overview of the day-to-day challenges facing the adolescent, such as fatigue, rarely explored despite its impact on their social life [28–31].
Second, the PTC is a place of training, positioning the adolescent as a direct interlocutor of a new practitioner, without their parents, and RHCPs pointed out a beneficial change in the adolescent-RHCP dynamic. Thus, it develops their self-advocacy, making them express their point of view, sometimes for the first time, concerning all relevant life issues, from CC self-management to intimate issues. In this exercise, putting their CC into words was sometimes difficult because of an insufficient knowledge, a discrepancy between their own representation and medical physiopathology [32] or coping strategies such as avoiding words perceived as too crude. While this was not an obstacle to self-management skills acquisition, using the exact wording of the CC was encouraged to empower adolescents in an adult healthcare setting. Adolescents were also given crucial information about health needs and functioning in adult care, to help them to take responsibility for their health and enhance their level of confidence in their future health services, both of which facilitate access to healthcare [11].
Finally, the RHCPs’ high satisfaction rate of and changes introduced in their clinical practices following PTCs, as well as the favorable 2-years outcomes of participants show that implementing a dedicated consultation helped to develop a transition policy within the hospital and to enhance transition support of adolescents.
Our methodology enabled us to analyze the implementation and functioning of this new service, in particular in terms of participants’ responses to CPT, and to adapt the PTC modalities in real time [21]. Because adolescents often minimized the treatment burden, the TBQ was abandoned to only assess the most burdensome topics (tests, appointments, diet). Thus, to involve parents [4, 5, 15, 19] bearing in mind their organizational difficulties, we now offer them individual interviews with the AD’venir coordinator or a psychologist and specific information on-line (https://advenir-robertdebre.aphp.fr/). Raising adolescents’ awareness of their own situation, the Good2Go is now completed at the very end of the PTC to give a more accurate indication of what to work before transfer [2]. However, the failure of transfer for one adolescent reminds that the predictive value of transition readiness questionnaires remains unclear in terms of transition success [19, 33]. Thus, we found no correlation between Good2Go scores and level of information regarding the transition or social context, which are nevertheless both key-points of transition success. Therefore transition readiness questionnaires must be seen as a complement to a global interview. Inversely, not assessed by Good2Go, lack of autonomy in daily life tasks was not considered sufficient to defer the transfer. Indeed, most adolescents become truly independent years later and holistic life-skills are not associated with transition outcome [11]. This reinforces our choice of the Good2Go among others validated questionnaires [19, 33].
Although recording might be intrusive, this research offers TPs a unique opportunity for self-reflexive and collective work on clinical practice. The external and non-prescriber TP’s position facilitates a non-judgmental attitude and avoids focusing on compliance and inducing a feeling of ‘good’ or ‘bad’ patient. Our results also emphasize two arguments in favor of choosing physician rather than non-physician HCPs to deliver PTCs. First, PTCs require medical knowledge in multiple fields to understand the context of the CC. Second, the physical examination helps to build a bond of trust necessary to address intimate concerns [34]. However, as adults [35], adolescents feel embarrassed to talk with HCPs about sexuality or risky behaviors, which are nevertheless frequent in adolescents with CC [36, 37]. This emphasizes the need to develop adolescent medicine in pediatric settings [38].
The main strength is the multidisciplinary approach, crossing the viewpoints of both clinicians and researchers to allow a finer adjustment of the intervention. Well-accepted and less time- and cost-consuming than qualitative interviews, audio-recordings allowed a real-life analysis. Finally, including a panel of CC responded to a need to enlarge the recruitment in transition studies [10]. Concerning weaknesses, including the first adolescents attending a PTC may introduce a recruitment bias, leading to more positive results [39].