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Our objective was to assess the value of transition preparation consultations (TPC) offered by the AD'venir unit (R. Debré hospital, Paris) as a new service of transitional care, from the perspective of adolescents with chronic conditions (CCs) and their referring healthcare providers (RHCPs). TPCs included a face-to-face interview with pediatricians trained in adolescent medicine, exploring the adolescent's past (CC history), present (daily life, Treatment Burden Questionnaire, family/peer relationships, school, hobbies, sexuality, drugs), and future (global life project, transition, Good2Go questionnaire). The mixed-methods design included the following: a qualitative analysis within a multidisciplinary group (clinicians/sociologists/psychologist/public health researchers) of audio-recordings of TPCs (n = 27/girls = 56%/median age = 17.7 years) and phone interviews with adolescents 2 years post-TPC (n = 26); and a quantitative analysis of the Treatment Burden and Good2Go questionnaires and the benefits perceived by RHCPs (questionnaire 6 months post-TPC). TPCs were a form of training for adult care, adolescents meeting a practitioner alone often for the first time. Naming their CC was difficult. All complained of limitations experienced in social life (diet, fatigue, laboratory/medical appointments), but not the treatment itself; most adolescents willingly talked about sexuality. Adolescents' feelings about transition were various, with poor representations of adult healthcare. Transfer was frequently unplanned. After TPCs, RHCPs modified their practices. Transition in the 2 years post-TPC was usually successful. Conclusion What is Known: • In adolescents with chronic conditions, it is advocated to personalize transition care according to the clinical and social context, pointed out as potentially impacting. • Little is known about the most effective ways to prepare patients according to their needs. What is New: • Based on a global approach to adolescent health, transition preparation consultations are delivered by specially trained physicians. • They are a feasible and valuable way to highlight facilitators and barriers to successful transition and initiate the adolescents' own vision of their future.

ImportanceSurveys based on hypothetical situations suggest that health-care providers agree that disclosure of errors and adverse events to patients and families is a professional obligation but do not always disclose them. Disclosure rates and reasons for the choice have not previously been studied.ObjectiveTo measure the proportion of errors disclosed by neonatal intensive care unit (NICU) professionals to parents and identify motives for and barriers to disclosure.DesignProspective, observational study nested in a randomised controlled trial (Study on Preventing Adverse Events in Neonates (SEPREVEN); ClinicalTrials.gov). Event disclosure was not intended to be related to the intervention tested.Setting10 NICUs in France with a 20-month follow-up, starting November 2015.Participantsn=1019 patients with NICU stay ≥2 days with ≥1 error.ExposureCharacteristics of errors (type, severity, timing of discovery), patients and professionals, self-reported motives for disclosure and non-disclosure.Main outcome and measuresRate of error disclosure reported anonymously and voluntarily by physicians and nurses; perceived parental reaction to disclosure.ResultsAmong 1822 errors concerning 1019 patients (mean gestational age: 30.8±4.5 weeks), 752 (41.3%) were disclosed. Independent risk factors for non-disclosure were nighttime discovery of error (OR 2.40; 95% CI 1.75 to 3.30), milder consequence (for moderate consequence: OR 1.85; 95% CI 0.89 to 3.86; no consequence: OR 6.49; 95% CI 2.99 to 14.11), a shorter interval between admission and error, error type and fewer beds. The most frequent reported reasons for non-disclosure were parental absence at its discovery and a perceived lack of serious consequence.Conclusion and relevanceIn the particular context of the SEPREVEN randomised controlled trial of NICUs, staff did not disclose the majority of errors to parents, especially in the absence of moderate consequence for the infant.Trial registration numberNCT02598609.

The objective of the study was to assess the clinically relevant features of the pre-transition consultation (PTC) offered in AD’venir transition unit (R.Debré hospital, Paris) to all adolescents with a chronic condition.PTCs include a face-to-face interview with pediatricians trained in adolescent medicine, exploring the past (disease history), present (daily life, Treatment Burden Questionnaire, family/peer relationships, school, hobbies, sexuality, drugs) and future (global life project, transition, Good2Go questionnaire). Twenty-seven PTC recordings were qualitatively analyzed (girls=56%/median age=17.7yrs) within a multidisciplinary group (clinicians/sociologists/psychologist/public health researchers). Respectively 6-months and 2-years after PTC, benefits of PTC were assessed in referent healthcare providers (questionnaire) and in adolescents (phone interview). PTCs were a form of training for adult care, adolescents meeting a practitioner alone often for the first time. Naming their chronic condition was frequently difficult. All complained of limitations experienced in their social life (notably diet, tiredness, laboratory/medical appointments), but not treatment itself. Most were willing to talk about sexuality. Feelings concerning transition were various, with poor representations of adult healthcare. Transfer was often unplanned, but this did not influence transition readiness. After PTC, healthcare providers often changed their practices. Two years later, transition was successful for most of adolescents. ConclusionThe PTC is a relevant, easily implemented tool to help empower adolescents and customize their transition preparation within a holistic approach. A dedicated and long consultation, with an external/non-prescriber practitioner, including a physical examination are key factors promoting the establishment of trust, sharing of intimate issues and the assessment of potential barriers to transition.

International audience; The prognostic value of IL7-receptor pathway (IL7Rp) mutations in T-cell acute lymphoblastic leukemia (T-ALL) remains unclear. We performed a comprehensive study of 200 adult patients with TALL included in the GRAALL2003/2005 protocols to address the clinical significance of IL7Rp mutations. Next-generation sequencing of the IL7Rp (IL7R/JAK1/ JAK3/STAT5B) revealed that IL7Rp mutations were frequent in adult TALL (28%) particularly in immature/early T-cell progenitor (ETP)-ALL. They were associated with mutations of NOTCH-pathway, PHF6, and PRC2 components but not with K/NRAS. IL7Rp mutated (IL7Rp mut) TALL were slow-responders, with a high rate of M2/M3 day-8 marrow compared with IL7Rp non-mutated (IL7Rp WT) TALL (p = 0.002) and minimal residual disease positivity at 6-weeks (MRD1) (p = 0.008) but no difference in MRD2 positivity at 12-weeks. Despite this, no adverse prognosis was evidenced when censored for allogeneic hematopoietic stem cell transplantation (HSCT). In time-dependent analysis, HSCT did not benefit IL7Rp mut patients whereas it was of marked benefit to IL7Rp WT cases. IL7Rp-mutations identify a subgroup of slow-responder T-ALLs which benefit from post-induction chemotherapy regimens but not from HSCT. Our data suggest that prior knowledge of the mutation status of IL7Rp may influence HSCT decision and help to guide therapy reduction.