Efficacy of a Transition Program in Adolescents and Young Adults With Congenital Heart Disease: The TRANSITION-CHD Randomized Controlled Trial.

PURPOSE: Currently, nearly 90% of patients with congenital heart disease (CHD) reach adulthood in relatively good health. Structured transition programs have emerged to support adolescents and young adults in transitioning to adult care structures, improve their autonomy, and limit healthcare ruptures. The TRANSITION-CHD randomized controlled trial aimed to assess the impact of a transition program on health-related quality of life (HRQoL) in adolescents and young adults with CHD. METHODS: From January 2017 to February 2020, 200 subjects with a CHD, aged 13-25 years, were enrolled in a prospective, controlled, multicenter study and randomized in two balanced groups (transition program vs. standard of care). The primary outcome was the change in PedsQL self-reported HRQoL score between baseline and 12-month follow-up, using an intention-to-treat analysis. The secondary outcomes were the change in disease knowledge, physical health (cardiopulmonary fitness, physical activity), and mental health (anxiety, depression). RESULTS: The change in HRQoL differed significantly between the transition group and the control group (mean difference = 3.03, 95% confidence interval (CI) = [0.08; 5.98]; p = .044; effect size = 0.30), in favor of the intervention group. A significant increase was also observed in the self-reported psychosocial HRQoL (mean difference = 3.33, 95% CI = [0.01; 6.64]; p = .049; effect size = 0.29), in the proxy-reported physical HRQoL (mean difference = 9.18, 95% CI = [1.86; 16.51]; p = .015; effect size = 0.53), and in disease knowledge (mean difference = 3.13, 95% CI = [1.54; 4.72]; p < .001; effect size = 0.64). DISCUSSION: The TRANSITION-CHD program improved HRQoL and disease knowledge in adolescents and young adults with CHD, supporting the generalization and systematization of similar preventive interventions in pediatric and congenital cardiology.

Meeting the needs of pregnant women in socially vulnerable situations: A phenomenological qualitative study.

Objective: Vulnerability relates to fragile physical, psychological, and socio-environmental circumstances. Pregnant women's social vulnerability can lead to disruptions in their medical follow-ups, prematurity, and increased infant mortality rates, such that their special needs must be considered. Yet, despite different governments' 'perinatality' plans, international literature suggests their care can be improved. Although quantitative studies regularly evaluate these plans, few studies have assessed vulnerable pregnant women's views. This study explores the needs and expectations of vulnerable women regarding their follow-ups during pregnancy and identified strategies to improve their circumstances. Methods: The study was a phenomenological qualitative study involving semi-structured interviews with women who gave birth in the past six months (December 2017 to June 2018) and who fulfilled at least one vulnerability criterion. The women were recruited by French midwives and general practitioners (GPs). Findings: Concerning these vulnerable pregnant women, three phenomenological categories emerged: 1) they need to be monitored by a single trusted contact; 2) they seek medical and social support adapted to their situations that addresses their needs; and 3) they expect kind and person-centred communication skills from professionals who provide them appropriate information. Conclusion: We identified various international recommendations to screen and care for vulnerable pregnant women, but still these women often experience numerous challenges. Finally, the implementation of recommendations for healthcare professionals based on women's real-life experiences could help optimise the identification of vulnerable pregnant women as well as their follow-up care.

[Obstacles and practical perspectives of the consultation in general medicine of migrants with psychological disorders. Qualitative study among French general practitioners]. / Obstacles et perspectives pratiques de la consultation en médecine générale du migrant porteur de troubles psychologiques. Étude qualitative auprès de médecins généralistes français.

OBJECTIVE: The aim of this study is to understand the problems of managing psychological disorders in migrant populations, based on the experience of general practitioners. METHOD: A qualitative study was carried out with general practitioners interviewed in a semi-directive mode. We chose the continuous comparison method and Peirce's pragmatic phenomenological approach to explore the lived experience. RESULTS: Thirteen interviews revealed four phenomenological categories: (1) Immigration was an experience of mental suffering from beginning to end at the source of psychological disorder migrant population (PDMPs) with the need for specialized follow-up. (2) Inadequate support on arrival, with complicated administrative procedures and insecure societal and environmental conditions, exacerbated the precariousness of migrants, making follow-up difficult. (3) Immigration was a transcultural journey in which the language, attitudes and perceptions of each individual blurred understanding of symptoms and care, and thus professional communication. (4) Unprepared general practitioners found counselling migrants to be difficult, time-consuming and complex. They pointed to the need for a coordinated system with comprehensive multidisciplinary care.Data saturation was reached. Three researchers were brought together. CONCLUSION: This study highlights the difficulties encountered by general practitioner (GPs) dealing with migrant patients in France. They feel helpless in the face of the nature of the disorders encountered and experience a disparity between the connections that are difficult to establish and those in their usual practice, even when professional experience with this population is acquired. They point to the need for coordinated models of care, financed by public policy.

OBJECTIF: L'objectif de cette étude est de comprendre les problèmes de la prise en charge des troubles psychologiques chez les personnes migrantes à partir de l'expérience des Médecins Généralistes. MÉTHODE: Une étude qualitative a été réalisée auprès de médecins généralistes interrogés sur un mode semi-directif. Nous avons choisi la méthode de comparaison continue et l'approche phénoménologique pragmatique de Peirce, afin d'explorer l'expérience vécue. RÉSULTATS: Treize entretiens réalisés ont permis de faire émerger quatre catégories phénoménologiques : (1) La migration était un itinéraire de l'expérience de la souffrance mentale du départ jusqu'à l'arrivée, à l'origine des TPPM avec nécessité d'un suivi spécialisé. (2) L'accueil insuffisant à l'arrivée du migrant, avec un parcours administratif compliqué et des conditions sociétales et environnementales insécures aggravaient leur précarité rendant leur suivi difficile. (3) La migration était un itinéraire transculturel dans lequel le langage, les attitudes et les représentations de chacun brouillaient la compréhension des symptômes et des soins et donc la communication professionnelle. (4) Les médecins généralistes impréparés considéraient la consultation du migrant inadaptée, chronophage et complexe. Ils pointaient la nécessité d'un dispositif coordonné avec une prise en charge globale pluridisciplinaire.La saturation des données a été atteinte. Il y a eu triangulation de trois chercheurs. CONCLUSION: Ce travail expose les difficultés rencontrées par les MG confrontés aux patients migrants en France. Ils se sentent démunis devant la nature des troubles exprimés et ressentent une inadéquation entre la relation difficile à mettre en place et celle de leur exercice habituel, même lorsque l'expérience professionnelle auprès de cette population est développée. Ils témoignent un besoin de modèles coordonnés de prises en charge, financés par les politiques.

Integrating general practitioners into crisis management would accelerate the transition from victim to effective professional: Qualitative analyses of a terrorist attack and catastrophic flooding.

BACKGROUND: In 2018, Trèbes, 6,000 inhabitants with nine general practitioners (GPs) in southern France, experienced two tragedies; a terrorist attack in March, in which four people were killed, and a catastrophic flood in October, in which six people died and thousands more were affected. OBJECTIVES: We aimed to obtain a substantive theory for improving crisis management by understanding the personal and professional effects of the two successive disasters on GPs in the same village. METHODS: This qualitative study conducted complete interviews with eight GPs individually, with subsequent analyses involving the conceptualisation of categories based on grounded theory. RESULTS: The analysis revealed that GPs underwent a double status transition. First, doctors who experienced the same emotional shock as the population became victims; their usual professional relationship changed from empathy to sympathy. The helplessness they felt was amplified by the lack of demand from the state to participate in the first emergency measures; consequently, they lost their professional status. In a second phase, GPs regained their values and skills and acquired new ones, thus regaining their status as competent professionals. In this context, the participants proposed integrating a coordinated crisis management system and the systematic development of peer support. CONCLUSION: We obtained valuable information on the stages of trauma experienced by GPs, allowing a better understanding of the effects on personal/professional status. Thus, the inclusion of GPs in adaptive crisis management plans would limit the effects of traumatic dissociation while increasing their professional effectiveness.

General practitioners must acquire skills to communicate with child with Autism Spectrum Disorder to regain their values and role in the follow-up - phenomenological study.

OBJECTIVE: To understand the perceptions and attitudes of general practitioners (GPs) regarding children with an Autism Spectrum Disorder (ASD). DESIGN: Phenomenological qualitative study. SETTING: Three focus groups, clinical settings. SUBJECTS: French GPs. MAIN OUTCOME MEASURES: 22 GPs took part in the study divided among three focus groups. They were volunteers to participate. Data were transcribed verbatim and analysed using a grounded theory data analysis, completed with a semiopragmatic analysis. RESULTS: Representing autism as a strange disorder in the doctor-patient relationship, GPs perceive a loss of sensory contact with the child with ASD that prevents the usual professional relationship between doctor and patient. They disengage themselves from monitoring the subject, concentrating on supporting the family. According to them, their role was to refer the patient to a specialist in the case of clinical intuition, but they have several reasons to give themselves time, all the more so because once the diagnosis is made, they lose sight of the patient and their place in the care pathway. GPs expressed the need to acquire skills and strategies to communicate with the autistic child to recover their role and values. CONCLUSION: GPs are disconcerted by the idea of communicating with children with ASD, as it takes them out of their usual professional benchmarks. They need communication tools that enable them to regain their role and relational value of the patient-centred approach. Beyond this, the question of the 'ethics of care' of the patient with a joint attention disorder is raised.KEY POINTSGPs are disconcerted with the idea of communicating with children with ASD.GPs need communication tools that enable them to regain their role and relational value of the patient-centred approach.The question of the 'ethics of care' of the patient with a joint attention disorder is raised.

Impact of a transition education program on health-related quality of life in pediatric patients with congenital heart disease: study design for a randomised controlled trial.

BACKGROUND: Recent advances in the field of congenital heart disease (CHD) led to an improved prognosis of the patients and in consequence the growth of a new population: the grown up with congenital heart disease. Until recently, more than 50% of these patients were lost to follow up because of the lack of specialized structures. The critical moment is the transition between paediatric and adult unit. Therapeutic education is crucial to solve this issue by helping patients to become independent and responsible. The TRANSITION-CHD randomized trial aims to assess the impact of a transition education program on health-related quality of life (HRQoL) of adolescents and young adults with CHD. METHODS: Multicentre, randomised, controlled, parallel arm study in CHD patients aged from 13 to 25 years old. Patients will be randomised into 2 groups (education program vs. no intervention). The primary outcome is the change in self-reported HRQoL between baseline and 12-month follow-up. A total of 100 patients in each group is required to observe a significant increase of the overall HRQoL score of 7 ± 13.5 points (on 100) with a power of 80% and an alpha risk of 5%. The secondary outcomes are: clinical outcomes, cardiopulmonary exercise test parameters (peak VO2, VAT, VE/VCO2 slope), level of knowledge of the disease using the Leuven knowledge questionnaire for CHD, physical and psychological status. DISCUSSION: As the current research is opening on patient related outcomes, and as the level of proof in therapeutic education is still low, we sought to assess the efficacy of a therapeutic education program on HRQoL of CHD patients with a randomized trial. TRIAL REGISTRATION: This study was approved by the National Ethics Committee (South-Mediterranean IV 2016-A01681-50) and was registered on Clinicaltrials.gov (NCT03005626).

The first pelvic examination: A rite of passage for the women. A qualitative study about French women.

Background: French general practitioners (GP) and gynaecologists can make use of recommendations when performing a patient's first pelvic examination. The indications and techniques for this examination are clear. The relational aspects and experience of the patients have been dealt with little.Objectives: To analyse and understand the experience of French women during their first pelvic examination to propose practice recommendations based on their experiences.Methods: Qualitative semi-structured interviews was conducted with 13 French women aged 18-30 years recruited from the surgery of a general practitioner using the snowball method. The data were analysed using an inductive method.Results: The first pelvic examination was considered an indispensable rite of passage into adulthood and the life of a woman. They wanted a preparation for a consultation devoted to the first pelvic examination, with a time that is adapted to each woman. A patient-centred practitioner was more important than the pelvic examination itself.Conclusion: Women requested for a general practitioner or a gynaecologist with a deeper understanding of a woman's experience to perform their first pelvic examination. We propose practical recommendations: the following 3 phases for the consultation: before the pelvic examination where the women and the practitioners may get to know one another; during the examination, which would involve the technical aspects and the associated procedures; and after the examination, where the patients and the practitioners review the experience and discuss prevention.

[Pain assessment of nursing home's residents by certified nursing assistants: a real-world study]. / Évaluation de la douleur des résidents en Ehpad par des aides-soignantes : une étude en condition écologique.

In French care facilities for dependent aged people (NHDAP), prevalence of pain among residents with dementia is high, and source of behavior disturbances and quality of life impairment. However, in spite of many international expert statements, pain remains under-assessed and under-managed in these patients. Certified nursing assistants (CNA) are on the front-line in NHDAP to detect the presence of pain in residents with communication difficulties, while they received little training for pain management and directives for specific care. Moreover, no studies were presently devoted to the impact of demographic and socio-professional determinants of CNA on pain assessment. In our study, we assessed the presence and intensity of pain in cognitively impaired residents in NHDAP, by CNA performing as a pair for the morning care. 42 pairs were recruited and independently completed a standardized behavioral assessment for pain (Doloplus scale) as well as a numeric rating scale. CNA personal characteristics were investigated to analyse the determinants of potential assessment discrepancies between each of the pairs. Presence of pain was detected in 51.1 to 91.1% of the patients depending on the tool and analysis criteria. In 28.9% important discrepancies were observed in the pain assessment between the CNA pairs, which could be related to professional status and prior use of the observational assessment. These inter-rater discrepancies should be reduced providing clear pain assessment guidelines for CNA in NHDAP, and further studies should be completed to figure out the role of CNA personal determinants in the patients' pain assessment.

Role of the general practitioner in the care of BRCA1 and BRCA2 mutation carriers: General practitioner and patient perspectives.

BACKGROUND: General practitioners (GPs) have an increasing role in referring patients with putative mutation in BRCA1/2 genes for genetics consultation and for long-term follow-up of mutation carriers. METHODS: We compared the expectations of the GPs' role according to BRCA1/2 mutation carriers and to GPs themselves. RESULTS: Overall, 38% (58/152) of eligible GPs and 70% (176/252) of eligible patients were surveyed. Although 81% of GPs collected the family history, only 24% considered that they know criteria indicating genetics consultation and 39% sufficient knowledge of BRCA1/2 guidelines to answer patients' questions. Twelve% of GPs were aware of the French national guidelines. Among unsatisfied patients, 40% felt that their GP was able to answer (moderately, sufficiently, or completely) specific questions about BRCA1/2 care as compared with 81% in satisfied patients. Only 33% of GPs reported being informed directly by the geneticist about the patients' results. GPs' main expectations for their role in BRCA1/2 carrier care were psychological support and informing relatives about screening (72% and 71%, respectively), which contrasts with the perceptions of patients, who mainly requested medical advice for BRCA1/2-related care (51%). CONCLUSION: There is an important need for GP training and enhancing interactions between GPs and geneticists to improve the GP's role in BRCA1/2 screening and management.

[Not Available]. / Comprendre la décision vaccinale des parents pour mieux accompagner leurs choix: étude qualitative phénoménologique auprès des parents français.

OBJECTIVE: To understand parents' representations based on their own lived experiences and their influence on the decision to vaccinate their children. METHODS: This was a qualitative, in-depth, phenomenological study using semi-structured interviews with 14 volunteer parents who have children age-eligible for vaccination. The participants were recruited through family doctors in the Montpellier region (France). The methodology is modeled on grounded theory. The data, collected by audio recording, were analyzed using a semio-pragmatic method that brought forth conceptual categories giving meaning to the phenomenon being studied. RESULTS: Parents are unaware of the diseases for which there are vaccines and express a need for information. A perception of the inequality of the individual in face of the disease and the vaccine greatly influences the parents' vaccination decision. It induces in them a reasoned "sifting" of vaccines and leads them to strike a risk/benefit balance. They trust more in their doctor and their personal experience than in publicized information. CONCLUSION: Parents' lack of awareness of diseases, even those for which immunization exists, would suggest a need to better inform parents on this matter. Their perception of the inequality of the individual (their child) in face of the disease and the vaccine is the main determinant in their decision to vaccinate. Parents approach immunization in a thoughtful educated way, influenced by such factors as lifestyle, personal experiences and confidence in their doctor. These results make them very "critical" with regard to basic vaccination recommendations.