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Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic.

ABSTRACT: BACKGROUND:The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers. AIMS:To provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic. METHOD:Senior representatives of major UK-based professional and service-user representative organisations with a stake in the care of people with intellectual disabilities and/or autism were contacted to provide a list of concerns across three domains: 'mental health and challenging behaviour', 'physical health and epilepsy' and 'social circumstances and support'. The feedback was developed into statements on frequently reported priorities. These statements were then rated independently by expert clinicians. A video-conference meeting to reconcile outliers and to generate a consensus statement list was held. RESULTS:Thirty-two organisations were contacted, of which 26 (81%) replied. From the respondent's data, 30 draft consensus statements were generated. Following expert clinician review, there was initially strong consensus for seven statements (23%), increasing to 27 statements (90%) following video conferencing. CONCLUSIONS:These recommendations highlight the expectations of people with intellectual disabilities and/or autism in the current pandemic. This could support policymakers and professionals' deliver and evidence person-centred care.

SUBMITTER: Tromans S

PROVIDER: S-EPMC7609203 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic.

Tromans Sam S Kinney Michael M Chester Verity V Alexander Regi R Roy Ashok A Sander Josemir W JW Dudson Harry H Shankar Rohit R

BJPsych open 20201029 6

<h4>Background</h4>The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people ...[more]

PMID: 33118913

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Project description:BackgroundPeople with mental disorders and intellectual disabilities experience excess mortality compared with the general population. The impact of COVID-19 on exacerbating this, and in widening ethnic inequalities, is unclear.MethodsProspective data (N=167,122) from a large mental healthcare provider in London, UK, with deaths from 2019 to 2020, used to assess age- and gender-standardised mortality ratios (SMRs) across nine psychiatric conditions (schizophrenia-spectrum disorders, affective disorders, somatoform/ neurotic disorders, personality disorders, learning disabilities, eating disorders, substance use disorders, pervasive developmental disorders, dementia) and by ethnicity.FindingsPrior to the World Health Organization (WHO) declaring COVID-19 a public health emergency on 30th January 2020, all-cause SMRs across all psychiatric cohorts were more than double the general population. By the second quarter of 2020, when the UK experienced substantial peaks in COVID-19 deaths, all-cause SMRs increased further, with COVID-19 SMRs elevated across all conditions (notably: learning disabilities: SMR: 9.24 (95% CI: 5.98-13.64), pervasive developmental disorders: 5.01 (95% CI: 2.40-9.20), eating disorders: 4.81 (95% CI: 1.56-11.22), schizophrenia-spectrum disorders: 3.26 (95% CI: 2.55-4.10), dementia: 3.82 (95% CI: 3.42, 4.25) personality disorders 4.58 (95% CI: 3.09-6.53)). Deaths from other causes remained at least double the population average over the whole year. Increased SMRs were similar across ethnic groups.InterpretationPeople with mental disorders and intellectual disabilities were at a greater risk of deaths relative to the general population before, during and after the first peak of COVID-19 deaths, with similar risks by ethnicity. Mortality from non-COVID-19/ other causes was elevated before/ during the pandemic, with higher COVID-19 mortality during the pandemic.FundingESRC (JD, CM), NIHR (JD, RS, MH), Health Foundation (JD), GSK, Janssen, Takeda (RS).

Project description:ImportanceSmall, geographically limited studies report that people with intellectual and developmental disabilities (IDD) have increased risk for serious pregnancy-related and birth-related challenges, including preeclampsia, preterm birth, and increased anxiety and depression, than their peers. United States-based population-level data among people with IDD are lacking.ObjectivesTo identify perinatal and postpartum outcomes among a national, longitudinal sample of people with IDD enrolled in public health insurance, compare subgroups of people with IDD, and compare outcomes among people with IDD with those of peers without IDD.Design, setting, and participantsThis retrospective cohort study used national Medicaid claims from January 1, 2008, to December 31, 2019, for 55 440 birthing people with IDD and a random sample of 438 557 birthing people without IDD. Medicaid funds almost half of all births and is the largest behavioral health insurer in the US, covering a robust array of services for people with IDD. Statistical analysis was performed from July 2023 to June 2024.ExposurePeople who had a documented birth in Medicaid during the study years.Main outcome and measuresPerinatal outcomes were compared across groups using univariate and multivariate logistic regression. The probability of postpartum anxiety and depression was estimated using Kaplan-Meier and Cox proportional hazards regression.ResultsThe study sample included 55 440 birthing people with IDD (including 41 854 with intellectual disabilities [ID] and 13 586 with autism; mean [SD] age at first delivery, 24.9 [6.7] years) and a random sample of 438 557 birthing people without IDD (mean [SD] age at first delivery, 26.4 [6.3] years). People with IDD were younger at first observed delivery, had a lower prevalence of live births (66.6% vs 76.7%), and higher rates of obstetric conditions (gestational diabetes, 10.3% vs 9.9%; gestational hypertension, 8.7% vs 6.1%; preeclampsia, 6.1% vs 4.4%) and co-occurring physical conditions (heart failure, 1.4% vs 0.4%; hyperlipidemia, 5.3% vs 1.7%; ischemic heart disease, 1.5% vs 0.4%; obesity, 16.3% vs 7.4%) and mental health conditions (anxiety disorders, 27.9% vs 6.5%; depressive disorders, 32.1% vs 7.5%; posttraumatic stress disorder, 9.5% vs 1.2%) than people without IDD. The probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) was significantly higher among autistic people compared with people with ID only and people without IDD.Conclusions and relevanceIn this retrospective cohort study, people with IDD had a younger mean age at first delivery, had lower prevalence of live births, and had poor obstetric, mental health, and medical outcomes compared with people without IDD, pointing toward a need for clinician training and timely delivery of maternal health care. Results highlight needed reproductive health education, increasing clinician knowledge, and expanding Medicaid to ensure access to care for people with IDD.

Dataset Information

Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic.

Publications

Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic.

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