Devenir à l’âge adulte des enfants porteurs de pathologie chronique: Exemples de la transplantation rénale pour insuffisance rénale terminale et du diabète de type 1

Although chronic diseases affect social life at any age, the long-term social outcome of children with chronic disease is uncertain. Our objective was to describe social life, quality of life (QOL;SF36), sexuality and experience of transition from pediatric to adult care of pediatric renal transplant recipients (Transdevenir study) or children with type 1 diabetes (T1D)(Diabdevenir study) at adult age. Data of these two GEDEPAC French multicenter studies were collected by self-administered questionnaire (199 items) and compared with the general population (GP) by Standardized Incidence Ratios (SIR) matched for age-sex-period. In Transdevenir (n=374;median age (years) at survey=27.1;at 1st transplant=12.3;functioning graft=81%), difficulties of social integration were identified: less frequent marital life(SIR=0.60), lower educational level, higher unemployment (SIR=1.77) and fixed-term contracts (SIR=1.79) rates. The social participation was negatively correlated to: disease severity (early diagnosis, hereditary disease, comorbidity), lower personal or parental educational level, and young age. The global QOL was reduced.In Diabdevenir (n=388; mean age=28.5±3.1yrs;mean DT1 duration=17±2.7yrs), social participation was satisfying (educational level, unemployment and familial life similar to GP). However, the daily alcohol consumption was more frequent (SIR=men:3.1;women:6.1), as well as dissatisfaction withsexuality, and mental QOL was significantly decreased. To develop research on long-term well-being of children with other chronic diseases, the GEDEPAC-2 questionnaire was constructed (validation in progress).Bien que les maladies chroniques affectent à tout âge la vie sociale, le devenir social à long terme des enfants malades est mal connu. Notre objectif était d’évaluer l’insertion sociale, la qualité de vie (QDV;SF36), la sexualité et le vécu de la transition pédiatrie-médecine adulte d’adultes transplantés rénaux (étude Transdevenir) et diabétiques de type 1 (DT1)(étude Diabdevenir) dans l’enfance. Les données de ces 2 études GEDEPAC multicentriques françaises étaient recueillies par auto-questionnaire (199 items) et comparées à la population générale (PG) par Ratios Standardisés d’Incidence (RSI) appariés sur âge-sexe-période. Dans Transdevenir (n=374;âge médian à l’enquête=27,1 ans;à 1ère greffe=12,3 ans; greffon fonctionnel=81%), des difficultés d’intégration sociale étaient identifiées : vie en couple moins fréquente (RSI=0,60), niveau de diplôme inférieur, chômage (RSI=1,77) et contrats à durée déterminée (RSI=1,79) plus fréquents. L’insertion était négativement corrélée à: sévérité de la maladie (diagnostic précoce, maladie héréditaire, comorbidité), faible niveau éducatif personnel ou parental, et âge jeune. La QDV globale était diminuée. Dans Diabdevenir (n=388;âge moy=28,5±3,1 ans;durée moy du DT1=17±2,7 ans), l’insertionsociale était satisfaisante (niveau d'études, chômage et vie de famille similaires à PG). Cependant, la consommation quotidienne d'alcool était plus fréquente (RSI=hommes:3,1;femmes:6,1), de même que l’insatisfaction sexuelle, et la QDV mentale était significativement altérée. Pour développer la recherche sur le bien-être à long terme dans d’autres maladies chroniques, le questionnaire GEDEPAC-2 a été construit (validation en cours)

Prise en charge du syndrome de Klinefelter dans deux centres hospitalo-universitaires pédiatriques en 2008

LYON1-BU Santé (693882101) / SudocPARIS-BIUM (751062103) / SudocSudocFranceF

Accompagner la transition des jeunes avec une maladie chronique

La transition entre la pédiatrie et la médecine pour adultes est une période charnière pour les adolescents et jeunes adultes porteurs d’une maladie chronique : elle comporte un fort risque de rupture du parcours de soins et de dégradation de l’état de santé à court et long termes. Pour accompagner ce passage, plusieurs plateformes de transition ont été créées ces dernières années en France, dans des hôpitaux pédiatriques ou dans les hôpitaux pour adultes. Leur objectif commun est d’être un lieu ressource offrant un accueil physique des jeunes et de leurs parents autour des questions liées à cette transition, ainsi qu’un accès aux informations utiles à leurs besoins de santé globale. Elles travaillent en partenariat étroit avec les services de soins et les associations de patients. Une forte hétérogénéité de fonctionnement et d’offre de soins est observée dans ces structures encore récentes, qu’il convient de multiplier et de pérenniser. Le principal défi à relever dans les prochaines années est de renforcer les partenariats entre pédiatrie et hôpitaux pour adultes afin de baliser au mieux le parcours de soin des jeunes porteurs d’une maladie chronique

Are transition preparation consultations for adolescents with chronic conditions valuable? A mixed-methods study.

peer reviewedOur 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

Pre-Transition Consultations for Adolescents With Chronic Conditions in a General Pediatric Hospital: Lessons Learned

Abstract 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. Conclusion The 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

Long-term health-related quality of life outcomes of adults with pediatric onset of frequently relapsing or steroid-dependent nephrotic syndrome

International audienceBackground: Long-term psychosocial outcomes and health-related quality of life (HRQOL) in adults with pediatric onset of frequently relapsing or steroid-dependent idiopathic nephrotic syndrome (FRNS or SDNS) remain to be determined.Methods: In this prospective cohort study, 59 adults with pediatric onset of FRNS/SDNS and persistent active glomerular disease in adulthood completed the GEDEPAC-2 questionnaire exploring 11 well-being domains. Data were compared to the French general population (FGP) with standardized incidence ratio ([SIR]; adjusted for period, age, gender). Regression models were performed to identify predictive factors of psychosocial well-being.Results: In 82% of cases, the questionnaire was completed while the participants (n = 59; 47 men; median age = 32 years; median number of relapses = 13) were in complete remission (under specific therapy in 76% of cases). Participants had higher educational degree than in the FGP (SIR = 6.3; p < 0.01) and more frequently a managerial occupation (SIR = 3.1; p < 0.01). Social integration was acceptable with regard to marital status and experience of sexual intercourse, but experiences of discrimination were far more frequent (SIR = 12.5; p < 0.01). The SF-12 mental component summary (MCS) score was altered (Z-score = - 0.6; p < 0.01) and mean multidimensional fatigue inventory (MFI-20) global fatigue score appeared high (12). Transfer from pediatric to adult healthcare was followed by a period of discontinued care for 33% of participants. Multivariate analysis revealed a close relationship between MFI-20, physical health, and MCS.Conclusions: This study shows that pediatric onset FRNS and SDNS may have a long-term negative impact on mental HRQOL and highlights the impact of fatigue, which is often not adequately considered in routine care