Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study.

BACKGROUND: The care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption. METHODS: The longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care. RESULTS: Among the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.). CONCLUSIONS: This study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals. TRIAL REGISTRATION: NCT02400528, registered 27/03/2015.

Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study.

INTRODUCTION: Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo-Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France. OBJECTIVE: We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context. METHOD: Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8-35. The resulting data were analyzed using thematic analysis. RESULTS: The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities. CONCLUSION: This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know-how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion. PATIENT OR PUBLIC CONTRIBUTION: One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript.

Health and Well-Being Outcomes of Adolescents Conceived Through In Vitro Fertilization and Intracytoplasmic Sperm Injection.

What is the perception of health and well-being of adolescents from an assisted reproductive technology (ART) cohort? We conducted a survey, from September 2015 to June 2016, through self-completion questionnaires, on 487 singleton or twin ART-conceived 11- to 15-year-old adolescents, followed up since 1994, as part of an ART cohort. Collected data concerned perinatal characteristics, health indicators and perception, eating habits, behavior, and living standards. A total of 60.6% of the questionnaires were returned and could therefore be analyzed. This concerned 295 adolescents who were representative of the 788 remaining adolescents of our cohort, in terms of type of ART, maternal and perinatal characteristics, but not gender (sex ratio = 0.77). Overall, 15.3% reported chronic diseases, and only 13.3% of them considered that their chronic disease had an impact on their school life. Moreover, 94.2% of adolescents perceived that their health was "excellent" or "good"; 97.3% adolescents had normal weight or were underweight; onset of menstruation was 12 years old (± 1) for girls, age usually reported for puberty in girls; 51.9% declared having regular physical activity, boys more frequently than girls. Moreover, 70.6% of the boys had a sedentary behavior compared to 44.8% of the girls. A total of 73.5% of the adolescents were stressed at school, but school demand was considered high only in 12.2% of cases. Finally, 90% declared to have high life satisfaction. Overall, ART does not appear to have particular effect on the health indicators and behavior of adolescents who participated in the survey except for higher family affluence scale.

The first 50 live births after autologous oocyte vitrification in France.

PURPOSE: The study aims to describe the newborn health parameters of the 50 first children conceived after autologous oocyte vitrification in France. METHODS: The 50 children born after autologous oocyte vitrification/warming cycle (VAO children) have been retrospectively compared with 364 children conceived by micromanipulation using freshly recovered non-vitrified oocytes (ICSI children). Children included in the study were born between 2011 and 2015. Maternal characteristics (age, body mass index, smoking habits), obstetric outcomes (diabetes, hypertension, placenta previa, parity, mode of delivery), and perinatal outcome (twinning, sex, birth weight, macrosomia, birth defects) were analyzed. The generalized estimating equation for correlated data was performed to evaluate perinatal outcomes and caesarean section. RESULTS: No statistically significant difference was found between VAO children and ICSI children, even after adjusting confounding factors (low birth weigh odds ratio (OR) 0.8, 95 % confident interval (CI) 0.3-2.2, adjusted (AOR) 0.5, 95 % CI 0.2-1.7; large for gestational age OR 1.5, 95 % CI 0.3-7.0, AOR 1.6, 95 % CI 0.3-7.5; birth defects OR 0.4, 95 % CI 0.1-3.2, AOR 0.5, 95 % CI 0.1-3.7; caesarean section OR 1.8, 95 % CI 0.9-3.4, AOR 1.8, 95 % CI 0.9-3.7). CONCLUSIONS: According to our results, newborn health parameters of children conceived in our center by micromanipulation using vitrified/warmed autologous oocytes seem not to be different from children born after micromanipulation on freshly recovered oocytes.