Dataset Information

Perinatal and Postpartum Health Among People With Intellectual and Developmental Disabilities.

ABSTRACT:

Importance

Small, 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.

Objectives

To 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 participants

This 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.

Exposure

People who had a documented birth in Medicaid during the study years.

Main outcome and measures

Perinatal 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.

Results

The 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 relevance

In 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.

SUBMITTER: Shea L

PROVIDER: S-EPMC11327882 | biostudies-literature | 2024 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Perinatal and Postpartum Health Among People With Intellectual and Developmental Disabilities.

Shea Lindsay L Sadowsky Molly M Tao Sha S Rast Jessica J Schendel Diana D Chesnokova Arina A Headen Irene I

JAMA network open 20240801 8

<h4>Importance</h4>Small, 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.<h4>Objectives</h4>To identify perinatal and postpartum outcomes among a national, longitudinal sample of people with ...[more]

PMID: 39145975

Similar Datasets

Project description:IntroductionPostpartum health care among women with intellectual and developmental disabilities has not been well studied. This study uses administrative claims to compare postpartum outpatient visits among women with and without intellectual and developmental disabilities.MethodsMassachusetts All Payers Claims Database 2012-2015 was used to identify women with intellectual and developmental disabilities and a live birth during 2012-2014, matched by infant birth year to 3 women without intellectual and developmental disabilities. Women were followed up for 1 year after delivery. Analyses were conducted in 2019. Poisson regression compared guideline-concordant postpartum and other outpatient visits during the early (21-56 days after delivery) and late (57-365 days after delivery) periods. Types of nonpostpartum care visits were examined.ResultsOverall, 962 and 2,886 women with and without intellectual and developmental disabilities, respectively, comprised the sample. Among women with intellectual and developmental disabilities, 23.9% had a postpartum visit in the early and 33.3% in the late postpartum periods, compared with 25.2% and 32.1% of women without intellectual and developmental disabilities who had visits in the early and late postpartum periods, respectively (p=0.49, 0.59). Women with intellectual and developmental disabilities were more likely to have other outpatient visits than those without intellectual and developmental disabilities, both in the early (63.1% vs 40.3%, adjusted RR=1.42, 95% CI=1.28, 1.58, p<0.001) and late (94.2% vs 82.3%, RR=1.11, 95% CI=1.08, 1.14, p=0.008) postpartum periods. Ancillary services, home health services, and alcohol/drug-related visits were much more common among women with intellectual and developmental disabilities.ConclusionsWomen with intellectual and developmental disabilities are equally likely to receive guideline-concordant postpartum visits and more likely to have other outpatient visits than other women. Further research is needed to evaluate visit quality and identify best practices to support mothers with intellectual and developmental disabilities during the postpartum period.

Project description:BackgroundHealth care is shifting toward a more person-centered model; however, people with intellectual and developmental disabilities can still experience difficulties in accessing equitable health care. Given these difficulties, it is important to consider how humanizing principles, such as empathy and respect, can be best incorporated into health and social care practices for people with intellectual and developmental disabilities to ensure that they are receiving equitable treatment and support.ObjectiveThe purpose of our scoping review is to provide an overview of the current research landscape and knowledge gaps regarding the development and implementation of interventions based on humanizing principles that aim to improve health and social care practices for people with intellectual and developmental disabilities.MethodsThe PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) and PICOS (Population, Intervention, Comparator, Outcome, and Study) frameworks will be used to structure the review. A total of 6 databases (PubMed, MEDLINE, Embase, CINAHL, PsycINFO, and Web of Science) will be searched for English articles published in the previous 10 years that describe or evaluate health and social care practice interventions underpinned by the humanizing principles of empathy, compassion, dignity, and respect. Two reviewers will screen and select references based on the eligibility criteria and extract the data into a predetermined form. A descriptive analysis will be conducted to summarize the results and provide an overview of interventions in the following three main care areas: health care, social care, and informal social support.ResultsThe results will be included in the scoping review, which is expected to begin in October 2022 and be completed and submitted for publication by January 2023.ConclusionsOur scoping review will summarize the state of the field of interventions that are using humanizing principles to improve health and social care for adults with intellectual and developmental disabilities.International registered report identifier (irrid)PRR1-10.2196/31720.

Project description:BackgroundChildren and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK's National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family's socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being.MethodsWe recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6-28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education's National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15-16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child's emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child's IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated.ResultsIn this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regardless of their IMD decile; those in the least deprived decile had almost 100% EHCP provision.ConclusionsThis study found evidence for nationwide regional inconsistencies in the awarding of EHCP to CYP with significant intellectual impairments of known genetic aetiology. Disparities in funds available to education authorities could be a contributory factor. EHCP support was potentially influenced by how strongly a parent advocates for their child.

Project description:BackgroundRoughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities.MethodsThis study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12-45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge.DiscussionTo our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups.Trial registrationClinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022).

Project description:BackgroundLittle is known about severe maternal morbidity (SMM) among women with disabilities.ObjectiveWe assessed differences in SMM and other perinatal complications by presence and type of disability. We hypothesised that SMM and other complications would be more common in births to women with disabilities than to women without disabilities.MethodsWe conducted a retrospective cohort study of California births from 2000 to 2012, using birth and death certificate data linked with hospital discharge data. We included singleton deliveries with gestational age of 23-42 weeks. We classified women as having any disability or not and identified disability type (physical, hearing, vision, intellectual/developmental disabilities [IDD]). Our primary outcome was a composite indicator of SMM. Secondary outcomes included additional perinatal complications: gestational hypertension, preeclampsia, gestational diabetes, venous thromboembolism, chorioamnionitis, puerperal endometritis and mental health disorders complicating pregnancy, childbirth or the puerperium. We used modified Poisson regression to obtain covariate-adjusted relative risks (RR) and 95% confidence intervals (CI) for the association of disability status and type with SMM and secondary outcomes.ResultsOf 5,787,090 deliveries, 33,044 (0.6%) were to women with disabilities. Of these, 311 per 10,000 were complicated by SMM, compared with 84 per 10,000 deliveries to women without disabilities. In multivariable analyses, risk of SMM for births to women with disabilities was nearly three times that for women without disabilities (RR 2.84, 95% CI 2.67, 3.02). Proportion and risk of SMM were greatest for vision disability (793 per 10,000; RR 4.04, 95% CI 3.41, 4.78). Secondary outcomes were also more common among women with disabilities. In particular, more than a third of births to women with IDD (37.4%) were complicated by mental health disorders (versus 2.2% for women without disabilities).ConclusionAs hypothesised, SMM and other perinatal complications were more common among women with disabilities than among women without disabilities.

Dataset Information

Perinatal and Postpartum Health Among People With Intellectual and Developmental Disabilities.

Importance

Objectives

Design, setting, and participants

Exposure

Main outcome and measures

Results

Conclusions and relevance

Publications

Perinatal and Postpartum Health Among People With Intellectual and Developmental Disabilities.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets