Effet du confinement lié au COVID-19 sur les rythmes veilles-sommeil chez l'adulte présentant un trouble du spectre autistique vs contrôles

Objectif Le confinement lié au Covid-19 a conduit à un changement des activités et routines du quotidien des français, pouvant affecter le sommeil différemment selon les populations. Notre étude est la 1ère à comparer l'effet du confinement sur les rythmes veille-sommeil et les comportements associés chez des sujets avec trouble du spectre autistique (TSA) et la population générale. Méthodes Une enquête en ligne nationale a permis de recruter 207 adultes avec TSA (56 % femmes) et 1652 contrôles (77 % femmes), d'un âge moyen égal (35 ans [17-70]). Résultats Avant le confinement, les sujets avec TSA avaient un sommeil plus tardif que les contrôles (13 % se couchant après 1 h et 6 % se levant après 11 h, contre 4 % et 0,6 %, p < 0,01), un rythme veille-sommeil plus irrégulier (15 % pouvant décaler leur rythme de plus de 2 h d'un jour à l'autre, contre 7 % chez les contrôles, p < 0,001), et un temps passé devant les écrans plus grand (21 % ≥ 4 heures par jour contre 9 % pour les contrôles, p < 0,001). L'ensemble des variables de sommeil et comportement associés ont été affecté significativement par le confinement (heure de lever et de coucher plus tardif, rythme veille-sommeil plus irrégulier, exposition aux écrans plus élevé, exposition à la lumière du jour réduite), la différence avant/pendant confinement était proche dans les deux populations. Conclusion Les rythmes veille-sommeil se sont détériorés pendant le confinement pour les sujets avec TSA et population générale. En revanche, les sujets TSA présentant déjà des difficultés avant le confinement, le décalage de phase et l'irrégularité des rythmes étaient encore plus extrêmes.

GenIDA: an international participatory database to gain knowledge on health issues related to genetic forms of neurodevelopmental disorders.

Intellectual disability with or without manifestations of autism and/or epilepsy affects 1-2% of the population, and it is estimated that more than 30-50% of these cases have a single genetic cause. More than 1000 genes and recurrent chromosomal abnormalities are involved in these genetic forms of neurodevelopmental disorders, which often remain insufficiently described in terms of clinical spectrum, associated medical problems, etc., due to their rarity and the often-limited number of patients' phenotypes reported. GenIDA is an international online participatory database that aims to better characterise the clinical manifestations and natural histories of these rare diseases. Clinical information is reported by parents of affected individuals using a structured questionnaire exploring physical parameters, cognitive and behavioural aspects, the presence or absence of neurological disorders or problems affecting major physiological functions, as well as autonomy and quality of life. This strengthens the implication in research of the concerned families. GenIDA aims to construct international cohorts of significant size of individuals affected by a given condition. As of July 2022, GenIDA counts some 1545 documented patient records from over 60 nationalities and collaborates with clinicians and researchers around the world who have access to the anonymized data collected to generate new, medically meaningful information to improve patient care. We present the GenIDA database here, together with an overview of the possibilities it offers to affected individuals, their families, and professionals in charge of the management of genetic forms of neurodevelopmental disorders. Finally, case studies of cohorts will illustrate the usefulness of GenIDA.

The impact of lockdown on young people with genetic neurodevelopmental disabilities: a study with the international participatory database GenIDA.

BACKGROUND: Previous publications suggested that lockdown is likely to impact daily living issues of individuals with intellectual disabilities. The authors notably suspected an intensification of behavioural, eating and sleep problems. METHODS: To test these hypotheses, we conducted an international online survey about the impact of COVID-19-associated first lockdown on people with genetic neurodevelopmental disorders. This survey was carried out using GenIDA, an international participatory database collecting medical information on genetic neurodevelopmental disorders. Patients' relatives took part in this online survey from 30/04/2020 to 09/06/2020. This survey adapted from GenIDA standard questionnaire requested information on diagnosis, lifestyle and was based on yes/no answers to questions regarding behaviour, diet, and sleep, in the 6-months period before lockdown and during lockdown. We also asked relatives to evaluate the intensity of these problems by severity level. Finally, relatives could freely comment in open fields on the medical and/or quality of life problems they had encountered during lockdown. RESULTS: In total 199 participants-144 children and 45 adults-with neurodevelopmental disorders (intellectual disability (79.4%) and/or autism spectrum disorder (21.6%)) of various genetic origins, with near-equal male/female (96/103) contribution and originating mainly from Europe and Northern America, were included. The average lockdown duration at time of the survey was 57 days. We did not find differences in the frequency of behavioural, eating and sleep problems before and during lockdown. Moreover, there was no apparent difference in the intensity of eating and sleep disorders between both periods. However, for persons with behavioural problems at both periods, relatives reported an increase in aggressivity, self-aggressivity, depressiveness, stereotypies, and restricted interests during lockdown, all of which might be interpreted as consequences of a lack of stimulation or a reaction to unexpected changes in daily habits. CONCLUSIONS: Our results support previous studies that suggest that the negative impact of lockdown does not depend on the intellectual disability per se but on the associated comorbidities such as behavioural disorders. This study addresses the need for prevention of behavioural disturbance in the vulnerable population with genetic neurodevelopmental disabilities.

Differential effects of COVID-related lockdown on sleep-wake rhythms in adults with autism spectrum disorder compared to the general population.

COVID-related lockdown led to a radical modification of daily activities and routines which are known to affect sleep. Compared to the general population, participants with autism may be particularly vulnerable to the repercussions of lockdown on sleep, given their intrinsic inflexible adherence to routines and the high overall prevalence of sleep disturbances in this population. The study is a French nation-wide online survey assessing sleep-wake rhythms and behaviors known to affect sleep (daily screen time, daylight exposure, and physical activity), before and during COVID-related lockdown. Respondents were 207 adults with autism (56% female) and 1652 adults of the general population (77% female), with a mean age 35.3 years (SD 11.3). Before lockdown, the adults with autism displayed on average later bedtime and waking hours, lower sleep quality, more evening screen time, less exposure to daylight, and less exercise (all p < 0.01). Lockdown affected all studied measures of sleep and related exposures in a similar way in both groups: poorer self-rated sleep quality as well as a less regular and delayed sleep-wake rhythm, longer screen time in the evening and less exposure to daylight (all p < 0.001). Adults with autism displayed significantly higher levels of sleep and circadian rhythm disturbances and less favorable daily routines known to regulate sleep. While the effect of confinement on sleep and sleep related behaviors was similar in both groups, the results highlight that the pre-existing shift in circadian rhythms and lifestyles in adults with ASD further deteriorated during lockdown. LAY ABSTRACT: COVID-related lockdown led to a radical modification of daily activities and routines known to affect sleep. In a sample of 1800 adults, we observed that, before lockdown, participants with autism displayed significantly higher levels of sleep disturbances and less favorable daily routines known to regulate sleep, compared to the general population. While the deleterious effect of lockdown on sleep was similar in both groups, pre-existing difficulties in adults with autism reached worrying levels during lockdown.

Effet du confinement lié au COVID-19 sur les rythmes veilles-sommeil chez l’adulte présentant un trouble du spectre autistique vs contrôles

Objectif Le confinement lié au Covid-19 a conduit à un changement des activités et routines du quotidien des français, pouvant affecter le sommeil différemment selon les populations. Notre étude est la 1ère à comparer l’effet du confinement sur les rythmes veille-sommeil et les comportements associés chez des sujets avec trouble du spectre autistique (TSA) et la population générale. Méthodes Une enquête en ligne nationale a permis de recruter 207 adultes avec TSA (56 % femmes) et 1652 contrôles (77 % femmes), d’un âge moyen égal (35 ans [17-70]). Résultats Avant le confinement, les sujets avec TSA avaient un sommeil plus tardif que les contrôles (13 % se couchant après 1h et 6 % se levant après 11h, contre 4 % et 0,6 %, p<0,01), un rythme veille-sommeil plus irrégulier (15 % pouvant décaler leur rythme de plus de 2h d’un jour à l’autre, contre 7 % chez les contrôles, p<0,001), et un temps passé devant les écrans plus grand (21 % ≥4heures par jour contre 9 % pour les contrôles, p<0,001). L’ensemble des variables de sommeil et comportement associés ont été affecté significativement par le confinement (heure de lever et de coucher plus tardif, rythme veille-sommeil plus irrégulier, exposition aux écrans plus élevé, exposition à la lumière du jour réduite), la différence avant/pendant confinement était proche dans les deux populations. Conclusion Les rythmes veille-sommeil se sont détériorés pendant le confinement pour les sujets avec TSA et population générale. En revanche, les sujets TSA présentant déjà des difficultés avant le confinement, le décalage de phase et l’irrégularité des rythmes étaient encore plus extrêmes.