Checklist for follow-up of adolescents with chronic illness. A monitoring tool to help prepare the transition from pediatric to adult care.

Adolescence can be a particularly challenging period for individuals with a chronic illness. To help the specialized healthcare teams, an expert panel drafted a checklist of topics to be addressed throughout adolescence that are often not covered in subspecialty clinic visits such as peers, coping, adherence, understanding of illness, sexuality, etc., since these topics apply to youth with special healthcare needs. Each member of the specialized team can discuss one of the themes according to their role with the adolescent as a doctor, educator, nurse, dietician, etc. The coherence of the team enables a comprehensive approach and will facilitate the transition to adult medical care.

Patients' association programs for adolescents and young adults: The JAP study.

INTRODUCTION: A dozen innovative care clinics have recently opened in France to support the transition of adolescents with chronic conditions between pediatric and adult healthcare units through various interventions. Some patients' associations have set up specific programs for adolescents and young adults (AYAs) in order to facilitate the transition process, but they are not well-known among healthcare professionals. Our aim was to describe these programs and to evaluate the quality of their implementation and transferability into transition clinics. MATERIEL AND METHODS: We conducted semistructured interviews with representatives of associations that proposed interventions dedicated to AYAs with chronic conditions. We collected quantitative and qualitative data to describe these interventions. Descriptive statistics were run on quantitative data and a thematic analysis of the qualitative data was made. RESULTS: A questionnaire was sent to 55 associations, 19 (36%) of them had established programs and were contacted; interviews were conducted with 16 of them. Thirteen were national associations, 11 focused on a specific chronic disease, three supported multiple chronic conditions, and two were available to any AYA with chronic disease. Programs were mainly camps (n=5; from 2days to 3weeks) and workshops (n=5). Educational considerations and hobbies were more frequently discussed when peers were directly involved in the program. Stakeholders were mainly other patients and peers (9/16). Fourteen out of 16 were perceived as successful (perceived improvement in AYA quality of life and/or positive feedback). Twelve out of 16 associations thought that their program could be transferable to transition clinics and all were interested in collaboration. DISCUSSION: This work highlights five key points to be considered in the clinical care setting before building programs: unique tailoring and customization, complementarity with existing programs in patients' associations, viability based on peer involvement and evaluation, a common main goal, and using transition clinics' assets to direct AYAs towards the most suitable program.

Transition from pediatric to adult care in adolescents with hereditary metabolic diseases: Specific guidelines from the French network for rare inherited metabolic diseases (G2M).

Inherited metabolic diseases (IMD) form a heterogeneous group of genetic disorders that surface primarily during childhood and result in significant morbidity and mortality. A prevalence of 1 in 2500-5000 live births is often reported. The transfer of adolescents from pediatric care to adult health facilities is often difficult for patients and their families and can lead to a breakdown in medical follow-up and therefore serious complications. Existing recommendations for the successful transition of patients with chronic disorders do not specifically address patients with IMDs associated with dietary treatment. Here, the French network for rare inherited metabolic diseases (G2M) presents its reflections and recommendations for a successful transition. Preparations for the transfer must be made well in advance. The transfer must aim for adolescents gaining autonomy by making them responsible and providing them with the knowledge that will enable them to manage their care themselves, know how to react appropriately if there is any change in their condition, and move comfortably within the adult healthcare system. This requires the active participation of the patient, his or her family, and pediatric and adult care teams. It involves multidisciplinary management plus the production and maintenance of an educational therapy program. Finally, the identification of physicians and dietitians trained in IMDs, relevant subspecialists, and even expert patients could improve the continuum of complete and appropriate care for these patients within adult medicine.

Methodology used in comparative studies assessing programmes of transition from paediatrics to adult care programmes: a systematic review.

OBJECTIVE: To explore the methodologies employed in studies assessing transition of care interventions, with the aim of defining goals for the improvement of future studies. DESIGN: Systematic review of comparative studies assessing transition to adult care interventions for young people with chronic conditions. DATA SOURCES: MEDLINE, EMBASE, ClinicalTrial.gov. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: 2 reviewers screened comparative studies with experimental and quasi-experimental designs, published or registered before July 2015. Eligible studies evaluate transition interventions at least in part after transfer to adult care of young people with chronic conditions with at least one outcome assessed quantitatively. RESULTS: 39 studies were reviewed, 26/39 (67%) published their final results and 13/39 (33%) were in progress. In 9 studies (9/39, 23%) comparisons were made between preintervention and postintervention in a single group. Randomised control groups were used in 9/39 (23%) studies. 2 (2/39, 5%) reported blinding strategies. Use of validated questionnaires was reported in 28% (11/39) of studies. In terms of reporting in published studies 15/26 (58%) did not report age at transfer, and 6/26 (23%) did not report the time of collection of each outcome. CONCLUSIONS: Few evaluative studies exist and their level of methodological quality is variable. The complexity of interventions, multiplicity of outcomes, difficulty of blinding and the small groups of patients have consequences on concluding on the effectiveness of interventions. The evaluation of the transition interventions requires an appropriate and common methodology which will provide access to a better level of evidence. We identified areas for improvement in terms of randomisation, recruitment and external validity, blinding, measurement validity, standardised assessment and reporting. Improvements will increase our capacity to determine effective interventions for transition care.

[Perception of adolescent medicine among French pediatric residents]. / Représentations de la médecine de l'adolescent chez les futurs pédiatres.

PURPOSE: The perception of adolescent medicine (AM) among future pediatricians in France has scarcely been explored although adolescent health care is an integral part of the pediatrician's job. Moreover, pediatric residents seem to have a lack of enthusiasm for this field. The aim of this study was to assess the beliefs and perceptions of fourth-year French pediatric residents regarding adolescents and AM. METHODOLOGY: We conducted a national electronic survey among French pediatric residents in their last year of residency. An original 51-item, open-ended declarative questionnaire was sent out including questions on demographics, career expectations, AM block rotation experiences, and perceptions and beliefs regarding adolescents and AM. Difficulties and barriers experienced in this field were investigated. Queries about residents' specific AM courses and about their educational needs were also explored. RESULTS: The survey was conducted online between January and March 2015. There were 121 respondents, achieving a 43% response rate. The majority of respondents perceived teens as interesting (75%), vulnerable (83%), and time-consuming (84%). Up to four fifths of respondents (81%) considered AM to be a skill that all pediatricians should acquire. A subgroup analysis showed that the residents who had not experienced an AM block rotation did not seem to be convinced of the need for training in this field (P=0.09). The following issues were reported as major difficulties by residents: providing care for teens reluctant to seek health care (65%), managing violent behavior among adolescents in the emergency ward (98%), and managing adolescents who attempt suicide (80%). Less than half (45%) of the residents reported their residency program had a specific AM course. Among them, 73% attended the lectures and 57% found them useful. One third (32%) of the respondents had experienced a 2-month block rotation in the field of AM during their residency. DISCUSSION: This is the first nationwide study in France in this field. Although the response rate is below 50%, it exceeded our expectations. Our results are in line with previous studies showing that pediatric residents report a high interest in working with adolescents and yet their educational needs in AM are unmet. The limitations of this study include the self-selection bias and implicit limitations carried by the phrasing of the survey questions. CONCLUSIONS: There is a need to devise a better educational approach combining a broader proposal of AM block rotations together with a specific competency framework in adolescent health, since we know it improves the quality of health care delivered to adolescents. Moreover, training pediatricians in AM is a public health priority so as to comply with medical schools' principles of social accountability and address the priority health needs for an efficient, equitable, and sustainable health system. At a time when postgraduate reform is being made, the inclusion of an AM curriculum in the general pediatrician course is necessary.

Long-term impact of childhood-onset type 1 diabetes on social life, quality of life and sexuality.

AIM: This study describes the socio-professional outcomes, health-related quality of life (HRQOL) and sexuality of adults with childhood-onset type 1 diabetes (T1D). METHODS: The study participants (n=388), recruited from a nationwide registry (age: 28.5 ± 3.1 years; T1D duration: 17.0 ± 2.7 years), completed a questionnaire (198 items); the results were compared with the French general population using standardized incidence ratios (SIRs) and Z scores matched for age, gender and period with/without education levels and patterns of family life. Linear regression models also investigated correlates of SF-36 Physical (PCS) and Mental Composite Scores (MCS). RESULTS: Compared with the French general population, education levels of people with T1D were similar, with 68.6% having at least a high-school diploma or higher (SIR: 1.06, 95% CI: 0.93; 1.20), as were also their patterns of family life. Unemployment was higher in T1D women (15.3%, SIR: 1.50, 1.00; 2.05), but not in T1D men (8.6%, SIR: 0.96, 0.51; 1.57). Social discrimination was more common (SIR: 5.64, 4.64; 6.62), and frequency of daily alcohol consumption was higher (SIR: men, 3.34, 2.38; 4.54; women, 6.53, 4.57; 12.99). PCS and MCS were decreased moderately (mean ± SD: 52.0 ± 7.5; mean Z score: -0.2, 95% CI: -0.3; -0.1) and substantially (mean ± SD: 42.1 ± 12.4; mean Z score: -0.7, -0.8; -0.6), respectively. Fatigue and abandoning sports were predictive of a lower HRQOL. Both men and women were more frequently dissatisfied with their sex life. Prevalence of sexual problems was higher in women (SIR for: dysorgasmia, 1.91, 1.21-2.88; decreased/loss of desire: 2.11, 1.35-3.08), but similar in men. Participants with T1D-related complications had preserved social outcomes, but altered HRQOL. CONCLUSION: Young adults with T1D have satisfactory social participation. However, their higher alcohol consumption, lower MCS and frequent dissatisfaction with sexuality suggest a heavy impact of the disease on morale, especially in women. Improving the everyday well-being of these young adults represents a key challenge for diabetes healthcare.

[The first consultation with an adolescent]. / La première consultation avec un adolescent.

It is crucial not to miss the first consultation with an adolescent. This article reviews some of the essential step necessary to help make the first consultation a success: the time to devote to the patient, the preparation of the consultation, mandatory issues to address, clinical/physical examination, conclusion of the consultation, the prescriptions and the follow-up.

[Poor adherence in chronic conditions during adolescence: understand in order to act]. / Difficultés d'observance dans les maladies chroniques à l'adolescence: comprendre pour agir.

Poor adherence is a concern for every health professionals taking care of chronic conditions patients. That kind of trouble appears especially during adolescence for various reasons we need to understand: rebellion, consciousness of disease, depression... Parents must be included in this analysis, because they are very concerned by the illness experience of their children, from the announcement until the autonomy. The medical staff also deals with this process. There are many solutions, often complex (medical, educative, psychosocial) to improve adherence, but their effectiveness is hard to show on a long-term basis. We describe in this article the holding of young patients during adolescence and the adjustements in order to help them accomplishing their usual adolescent development and the needs of life with chronic disease.

[Sex differences in adolescent care requests]. / La différence des sexes dans la demande de soins à l'adolescence.

Care requests and attitude to health are different according to individual's gender. Epidemiological data concerning teenagers show how these differences rapidly occur during puberty and seem to take a part in the global sexualization process, specific of this period of life. Female teenagers express more important expectations and needs than their male fellows. They take more medical advice, have several complaints, take more drugs, although consulting grounds and somatic pathologies are appreciably the same for both sexes. Concerning mental diseases, the situation is even more obvious. Feminine over-representation, appearing in a spectacular manner during adolescence, is rather linked to the kind of disorders than to a purely quantitative discrepancy: depressive tendency, suicide attempts, eating disorders are obviously feminine, whereas boys are mainly found on the side of behaviour disorders, acted violence, accidents, suicide with an important over-mortality. These differences according to the subjects' sex should be known for the clinical presentation and the encountered risks assessment to improve the evaluation, the prevention and the taking charge of teenagers health needs.

[Adolescents and contraception. What should the pediatrician know? (Part 2)]. / Les adolescents et la contraception. Que devrait savoir le pédiatre? (2e partie).

Many adolescents are sexually active and reproductive health is an important aspect of adolescent medicine. However, pediatricians are often uncomfortable with the issues of sexuality and contraception, for which they have not been particularly trained. The general purpose of this article is to increase pediatricians' sense of competence with adolescents, particularly when having to deal with or counsel on such a sensitive issue as contraception. This second of two parts addresses confidentiality and prescription of oral contraceptives to minors, how to ask questions about sexual and reproductive life, best initial choice and eventual subsequent switch of contraceptive pill, acne and oral contraception, problems with mental handicap, and finally, what about boys. Pediatricians interested in the care of adolescents are strongly invited to keep developing their expertise in the field of sexuality, contraception and reproductive health.