[The transition preparation consultation: What for?] / La consultation de préparation à la transition : pour quoi faire ?

The transition from pediatrics to adult services represents one of the many changes experienced by adolescents with chronic illnesses between childhood and adulthood. It needs to be structured and personalized to support the young person's development and empowerment, as well as the construction of his or her overall life project. With this in mind, AD'venir offers transition preparation consultations, the details and benefits of which are described in this article.

Clinics dedicated to transition preparation for adolescents and young adults with chronic conditions: Factors influencing their use.

To pool resources and reduce inequalities in access to transition preparation for patients, transition clinics were created in France. They are places in hospitals, independent of the usual care departments, offering multiple resources and services for adolescents and their parents. Of the 24 physicians from care departments who were surveyed, half of them do not use transition clinics. The implementation of transition clinics in hospitals did not lead to their adoption by the care departments that needed the most support for transition preparation of their patients. A strategy improving adoption is needed to allow transition clinics to reduce inequalities.

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

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.

Evaluation of a new transition organization for young adults with endocrine or metabolic diseases.

OBJECTIVE: To evaluate the effect of a new care organization on multiple outcomes of transition success and its cost-effectiveness in patients with any endocrine or metabolic disease diagnosed during childhood and transferred to adult care. DESIGN: Non-randomized controlled trial in a French university hospital. METHODS: Patients transferred to adult care during the control period (04/2014-08/2016) and the intervention period (09/2016-06/2018) were included. The intervention is based on case management involving liaising with pediatric services, personalizing care pathways, and liaising with structures outside hospital (general practitioner, educational and social sector). The primary endpoint was the percentage of patients lost to follow-up at 24 months post transfer. Other outcomes were collected from medical files, consultation software, and questionnaires. A cost analysis was performed. RESULTS: Two hundred two patients were included (101 per period), the most represented pathologies were congenital and non-congenital hypopituitarism (respectively n = 34 (17%) and n = 45 (22%)) and thyroid diseases (n = 21, 10%). Patients were aged 22.5 in median at 24 months post transfer where 12 were lost to follow-up in the control group vs 9 with the intervention (P = 0.49). The percentage of honored consultation among those planned during 24 months was higher with intervention (P = 0.0065). Patient satisfaction, physician trust, and transfer delay did not differ between the groups. The incremental cost-effectiveness ratio was €179 per patient not lost to follow-up. CONCLUSIONS: At 24 months post transfer, the rate of lost to follow-up did not differ significantly, but indicators of a steadier follow-up were increased and the intervention appeared to be cost-effective.

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

BACKGROUND: 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.

[Supporting the adolescents with chronic condition during transition: Role of the transition units]. / Accompagner la transition des jeunes avec une maladie chronique - Rôle des plateformes.

The transition of care between pediatric and adult care is a key-period for adolescents with chronic disease, because of the high risk of follow-up loss and of short-term and long-term poorer health. To support transition, platforms of transition have been created in France since several years, implemented in pediatric or adult care structures. Their common objective is to provide a physical reception of adolescents and their parents to share about transition issues, and to inform them about resources to enhance the adolescent's global health. They tend to work closely with the referent health care providers and the patients' associations. A large heterogeneity of functioning and health care supply is still observed in these recent structures. Supporting these structures and reinforcing the partnerships between pediatric and adults care remain a challenge.

TITLE: Accompagner la transition des jeunes avec une maladie chronique - Rôle des plateformes. ABSTRACT: 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.

[Accompanying the pediatric/adult service transition in chronically ill patients]. / Accompagner la transition pédiatrie-service d'adultes dans la maladie chronique.

The transition is a key step for adolescents with chronic illnesses, as they are at risk of a disruption in care, complications and even mortality. Accompanying this process is based on two axes: autonomization of the young person (acquisition of knowledge and know-how in a perspective of empowerment) and structuring of the care pathway (transition measures, pediatric/adult service coordination).

Validation of the "Good2Go": the first French-language transition readiness questionnaire.

The use of transition readiness questionnaires is strongly recommended in adolescents with chronic conditions. The aim of our study was to validate "Good2Go," the first French-language transition readiness questionnaire. We analyzed the data from 2 multicentric studies (Canada and France) involving adolescents with chronic conditions (type 1 diabetes, inflammatory bowel disease, cystic fibrosis, epilepsy, juvenile idiopathic arthritis). Content and construct validity were examined using factorial and Rasch analysis (structural validity), Spearman's correlation, and Mann-Whitney test (external validity). Cronbach's α and intra-class correlation coefficients explored reliability. Cognitive interviews assessed wording comprehension and item appropriateness. Good2Go was completed by 321 participants (boys = 51%; mean age = 16.4 years (standard deviation = 1.5; min = 14.0; max = 18.0); Canada = 51.1%). Factor analysis identified 3 domains: "health self-advocacy," "knowledge about chronic conditions," and "self-management skills." The 3-domain structure showed a satisfying Rasch fit, internal consistency, and test-retest reliability. Good2Go domain scores were significantly higher in participants over 17 years of age, indicating satisfactory external validity.Conclusion: Good2Go is a valid 20-item questionnaire to assess transition readiness in adolescents with chronic conditions and may be useful in routine care to propose individually tailored preparation for their transfer to adult healthcare. Further research is now needed to analyze correlation between domain scores and success of transition.What is Known:• In adolescents with chronic conditions, the use of transition readiness questionnaires is recommended to propose individually tailored preparation for their transfer to adult healthcare.• However, no French-language questionnaire has been so far validated.What is New:• Based on a complete validation methodology, this study highlights that the French-language 20-items Good2Go questionnaire has good psychometric properties.• It explores all transition key points though 3 scored domains: "health self-advocacy", "knowledge about chronic disease" and "self-management skills".

Practical generic guidelines for paediatric-to-adult transition for adolescents with chronic disease.

BACKGROUND: The last 20 years have seen many attempts to improve transition to adult healthcare for adolescents with chronic disease, but there is currently no established consensus on generic practices. Our goal was to identify relevant and pragmatic guidelines for transition practice for each step of this process (before, during and after transfer), applicable to a wide range of chronic illnesses and health services, via a participatory approach involving all the key stakeholders. METHODS: We conducted interviews and a literature review to elaborate a questionnaire for use in an online 2-round Delphi survey. The survey panel included 36 French health and social professionals from different care settings, and young adults and parents with an experience of healthcare transition related to all types of chronic disease. RESULTS: The survey consensus identified 19 items on feasibility and relevance criteria, which form the guidelines. It is composed of five practices to be adopted during preparation in paediatrics, seven practices in the active phase of transition and seven in adult care. Two guidelines achieved complete consensus: having a longer consultation for the first appointment with the adult doctor, and keeping the same adult doctor throughout follow-up. A further 36 items met the criterion of relevance, but were deemed unfeasible. CONCLUSIONS: Taking into account all stakeholder views and the real-world applicability of care practices enabled us to elaborate consensual guidelines whose implementation requires no additional health service resources.

[Managing the transition from childhood to adulthood in people with chronic disease]. / Gestion de la transition enfance-âge adulte dans les maladies chroniques

Managing the transition from childhood to adulthood in people with chronic disease. In young people with chronic condition, the transition from childhood to adulthood is a double challenge: challenge of adolescent development, impaired by disease or disability, and challenge of transition from pediatric to adult healthcare. To avoid discontinuity of care, transition must begin early (12-13 years) around personalized objectives, and be supported until transfer in adult care, planed when the adolescent is ready and clinically stable. In a perspective of empowerment, education of the young patient includes the self-management of the disease but also of its impact on life in young adults (affective aspects, professional life, hobbies, general health…). Attention should be paid on coordination between pediatric and adult care.

Gestion de la transition enfance-âge adulte dans les maladies chroniques. Pour les jeunes atteints de maladie chronique, le passage de l'enfance à l'âge adulte représente un double défi : défi du développement adolescent, impacté par la maladie ou le handicap, et défi du passage des services de pédiatrie aux services d'adultes. Pour limiter les ruptures de suivi, la transition se prépare précocement (12-13 ans) autour d'objectifs personnalisés, et s'accompagne jusqu'au transfert en soins d'adultes, programmé quand le jeune est apte et cliniquement stable. Dans une démarche d'autonomisation, éduquer le jeune patient implique d'aborder avec lui l'autogestion de sa maladie mais aussi son impact sur sa vie de jeune adulte (vie affective et professionnelle, loisirs, santé générale…). Coordonner les soins avec l'équipe d'adultes est aussi un point-clé.

Adult social and professional outcomes of pediatric renal transplant recipients.

BACKGROUND: Little is known about the socioprofessional situation of adult-aged kidney-transplanted children. This nationwide French cohort study documented the socioprofessional outcomes of adults who underwent kidney transplantation before age 16 years between 1985 and 2002. METHODS: Of 890 patients, 624 were eligible for a questionnaire and 374 completed it (response rate=60%; men=193 and women=181). The data were compared with the French general population using an indirect standardization matched for gender, age, and period. RESULTS: The median ages were 27.1 years at survey time and 12.3 years at first transplantation. Of the participants, 31.1% lived with a partner (vs. 52.2%; P<0.01) and 35.7% lived with their parents (vs. 21.0%; P<0.01). When standardized for parental educational level, fewer participants had a high-level degree (≥3-year university level) and fewer women had a baccalaureate degree. Professional occupations were similar to the French general population, but unemployment was higher (18.5% vs. 10.4%; P<0.01). Independent predictive factors for poor socioprofessional outcome were primary disease severity (onset in infancy or hereditary disease), the presence of comorbidities or sensorial disabilities, low educational level of the patient or his parents, female gender, and being on dialysis after graft failure. CONCLUSIONS: Transplanted children, particularly girls and patients with low parental educational levels, require optimized educational, psychologic, and social support to reach the educational level of their peers. This support should be maintained during adulthood to help them integrate into the working population and build a family.

Novel modeling of reference values of cardiovascular risk factors in children aged 7 to 20 years.

BACKGROUND AND OBJECTIVE: Most of the cardiovascular risk factors strongly associated with obesity and overweight vary with age and gender. However, few reference values are available for healthy European children. Our objective was to establish pediatric reference ranges for waist circumference, systolic and diastolic blood pressures, fasting lipid levels (total cholesterol, high-density lipoprotein cholesterol, low-density lipoprotein cholesterol, and triglycerides), glucose, and insulin. METHODS: A representative sample of 1976 healthy French individuals (1004 female participants and 972 male participants) aged 7 to 20 years was used to obtain age- and gender-specific normal ranges for each of the above-listed cardiovascular risk factors, based on the Royston and Wright method. RESULTS: Mean waist circumference increased with age in both genders and was slightly higher in males than in females. Whereas systolic blood pressure increased gradually with age, with the increase being steeper in males than in females, no gender effect was found for diastolic blood pressure, which was therefore modeled after pooling males and females. Total cholesterol, high-density lipoprotein cholesterol, low-density lipoprotein cholesterol, and triglyceride values varied little with age and gender. Glucose and insulin levels revealed pubertal peaks, which were sharper in females than in males, reflecting the normal insulin resistance during puberty. CONCLUSIONS: These ranges can be used as references for European children to monitor cardiovascular risk factors and to plan interventions and education programs.