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.

[Well-being in adulthood of patients with chronic conditions in childhood: The GEDEPAC-2 questionnaire]. / Bien-être à l'âge adulte des enfants atteints de maladies chroniques : le questionnaire GEDEPAC-2.

BACKGROUND: In France, chronic diseases affect 3 million children. In children with chronic conditions, long-term somatic outcome has been well described, but little is known about the psychosocial aspects of well-being. METHODS: Our aim was to build a self-administered questionnaire of global well-being in adults who had a chronic disease since or during childhood using a multidimensional and nonspecific approach. The questionnaire was constructed by a multidisciplinary group (epidemiologists, clinicians, sociologist, statistician). Items were built in compliance with reference data from the French general population (national surveys, free access) to allow comparative analysis adjusted for age and sex (and eventually other confounding factors) by indirect standardization (qualitative variables) or Z-scores (quantitative variables). RESULTS: The GEDEPAC-2 includes 108 items exploring 11 domains: education, employment, housing, material security, social links, civic engagement, leisure, environment, physical health/risky behavior, health-related quality of life and sex life. Factual questions and satisfaction scales jointly explore social well-being. Quality of life is analyzed in terms of physical quality of life, mental quality of life, fatigue and burden of treatment by 3 questionnaires validated in French (SF-12; MFI-20; Burden of Treatment Questionnaire). Experience of transition from pediatric to adult healthcare is described in 21 items. Paper and electronic versions were developed. CONCLUSION: Built in a multidimensional approach to well-being and in line with the available reference data, GEDEPAC-2 will facilitate the implementation of future studies on impact in adulthood of chronic disease in childhood.

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.

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.

[A new possible phenotype of carbimazole embryopathy: A case report]. / Un nouveau phénotype possible d'embryopathie au carbimazole : à propos d'une observation.

Many disorders have been described in infants exposed to carbimazole during the first weeks of pregnancy. The most common of them are congenital aplasia cutis, choanal atresia and esophageal atresia. Rather unspecific dysmorphic features and developmental delay have also been reported. This set of congenital malformations suggests the existence of a phenotype of carbimazole embryopathy. To date, about 30 cases have been reported. We report on a new case of pregnancy accidentally conducted under carbimazole which gave birth to a newborn presenting with a hypertrophic pyloric stenosis associated with hiatus hernia and tracheomalacia. These anomalies have been associated with other malformations already identified in children exposed in utero to carbimazole such as scalp defects, retrognathia and gothic palate. As no relation between propylthiouracil and congenital malformations has yet been described, this drug seems highly preferable for pregnant women presenting with hyperthyroidism during the 1st trimester of their pregnancy.