The AD’venir platform of the Robert Debré hospital in Paris helps young patients with chronic diseases in their transition from pediatric services to those dedicated to adults. The goal? Prepare them for a different organization and communication, but also to gain confidence and autonomy, to maintain the best chances of controlling their disease.
For young people with chronic illnesses who are followed in a hospital setting, the transition from pediatric services to those caring for adults can be complicated. While the former are protective, extensively involving parents and organizing care, the latter are based on the patient’s autonomy and responsibility. When “failed”, this transition leads to an opportunity loss: ” This period is usually complicated. It induces a loss of orientation in the course of care, with changes in interlocutors, sometimes inappropriate language on the part of doctors accustomed to seeing adults, a change in lifestyle that impairs therapeutic follow-up… There is a real risk of treatment disruption associated with a worsening of health status -appearance of long-term complications or rejection of the transplant for the recipients- and excess mortality. “Sums up Hélène Mellerio*, pediatrician and adolescent doctor at the Robert Debré hospital in Paris. We are talking here about young patients who often suffer from serious illnesses, requiring daily treatments such as type 1 diabetes, cystic fibrosis, Crohn’s disease, sickle cell disease, HIV infection or malformations.
Anticipate risk situations
Various devices have been tested to ease this transition, including one implemented from the department of adolescent medicine at the Robert Debré hospital in Paris: the platform AD’come. A team of four people, including two specialist adolescent doctors, offer preparatory consultations, group workshops, psychological interviews or appointments with a counsellor. La consultation de préparation à la transition permet notamment à l’adolescent de rencontrer un médecin sans ses parents de ella, pendant environ une heure, pour aboarder tous les aspects de ce changement, et plus largement toutes les questions d’adolescents, sous le prisme of chronic disease. ” We discuss a wide variety of medical and personal issues: the young man’s history, his representation of his illness, its long-term risks, his fertility, fatigue, studies, fears and expectations for the future, his affective life and family… We try to anticipate situations of potential risk of abandonment to support them in a personalized way, in collaboration with the reference teams. There are always aspects that allow the adolescent to be mobilized and arouse her interest. “, believes Hélène Mellerio.
An evaluation still in progress
The team hopes to provide validated evidence of the benefit of this structure on the health of young adults,” but this requires forming a cohort of sufficient size, followed long-term, and comparing it with others who benefit from different devices “, she remembers. The AD’venir platform and the clinical epidemiology and economic evaluation research unit applied to vulnerable populations* have just obtained funding from the Public Health Research Institute to carry out this evaluation (Nomad project). At the same time, the AD’venir team, in collaboration with the sociologist Agnès Dumas, has just published a to study qualitative assessment of the contribution of transition readiness consultations. About thirty were registered and analyzed by an interdisciplinary team: doctors, sociology, public health researcher, psychologist. The received adolescents also responded to a telephone survey two years later. It seems that this consultation taught them to put words to their illness, while some did not even dare to name it. They confided in him their fatigue, their pain, their resignations, the physical consequences of their illness, and even their love relationships and their sexuality. They better understood the terms and timing of the transfer from pediatric services to adult services. Two years after the consultation, many express their satisfaction and none have been lost sight of. The very doctors who referred these patients to the consultation answered a questionnaire and attest to a gain in maturity and autonomy of the young people. ” These early assessments underscore the relevance of this unprecedented transition readiness consultation system. They could encourage other centers to implement it! We are also ready to help you in this process. “, encourages Hélène Mellerio.
Note :
* AD’come transition platformadolescent medicine unit, Robert Debré AP-HP Hospital and unit 1123 Inserm/Paris Cité University, Clinical epidemiology and economic evaluation applied to vulnerable populations (Eceve)Paris
Font :H Mellerio et al. Are Transition Preparedness Consultations for Adolescents with Chronic Illnesses Valuable? A mixed methods study. Eur J Pediatricianonline edition of May 10, 2022. DOI: 10.1007/s00431-022–04473‑0
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