Dataset Information

Delivery of epilepsy care to adults with intellectual and developmental disabilities.

ABSTRACT: Epilepsy is common in people with intellectual and developmental disabilities (IDD). In adulthood, patients with IDD and epilepsy (IDD-E) have neurologic, psychiatric, medical, and social challenges compounded by fragmented and limited care. With increasing neurologic disability, there is a higher frequency of epilepsy, especially symptomatic generalized and treatment-resistant epilepsies. The causes of IDD-E are increasingly recognized to be genetic based on chromosomal microarray analysis to identify copy number variants, gene panels (epilepsy, autism spectrum disorder, intellectual disability), and whole-exome sequencing. A specific genetic diagnosis may guide care by pointing to comorbid disorders and best therapy. Therapy to control seizures should be individualized, with drug selection based on seizure types, epilepsy syndrome, concomitant medications, and comorbid disorders. There are limited comparative antiepileptic drug data in the IDD-E population. Vagus nerve and responsive neural stimulation therapies and resective surgery should be considered. Among the many comorbid disorders that affect patients with IDD-E, psychiatric and sleep disorders are common but often unrecognized and typically not treated. Transition from holistic and coordinated pediatric to adult care is often a vulnerable period. Communication among adult health care providers is complex but essential to ensure best care when these patients are seen in outpatient, emergency room, and inpatient settings. We propose specific recommendations for minimum care standards for people with IDD-E.

SUBMITTER: Devinsky O

PROVIDER: S-EPMC4631073 | biostudies-literature | 2015 Oct

REPOSITORIES: biostudies-literature

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Delivery of epilepsy care to adults with intellectual and developmental disabilities.

Devinsky Orrin O Asato Miya M Camfield Peter P Geller Eric E Kanner Andres M AM Keller Seth S Kerr Michael M Kossoff Eric H EH Lau Heather H Kothare Sanjeev S Singh Baldev K BK Wirrell Elaine E

Neurology 20150930 17

Epilepsy is common in people with intellectual and developmental disabilities (IDD). In adulthood, patients with IDD and epilepsy (IDD-E) have neurologic, psychiatric, medical, and social challenges compounded by fragmented and limited care. With increasing neurologic disability, there is a higher frequency of epilepsy, especially symptomatic generalized and treatment-resistant epilepsies. The causes of IDD-E are increasingly recognized to be genetic based on chromosomal microarray analysis to i ...[more]

PMID: 26423430

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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:BackgroundAccess to high-quality primary care has been identified as a pressing need for adults with intellectual and developmental disabilities (IDD). Adults with IDD live with complex physical and mental health conditions, use health services differently than the general population and continue to face challenges when accessing health services. Interprofessional primary care teams offer comprehensive and coordinated approaches to primary care delivery and are well-positioned to address the needs of adults with IDD and other vulnerable populations. Although interprofessional primary care teams are recommended, there is currently limited understanding of how interprofessional care is delivered and how access to a team of providers improves the health of this population. The aim of this paper is to describe the organizational attributes of interprofessional primary care for adults with IDD within and across models of team-based care in one local health service context.MethodsA multiple case study was conducted with five interprofessional primary care teams in Ontario, Canada. Multiple methods were used to generate data including: a survey, document review, electronic medical record report and qualitative interviews. Pattern matching was the primary analytic approach for the within and across case analysis.ResultsAdults with IDD were found to be a small part of the patient population served and this group was poorly identified in three of five teams. Key organizational attributes that support the delivery of interprofessional primary care for adults with IDD were identified. Two examples of targeted programs of care for this group were also found. Despite the presence of interprofessional health providers in all teams, there were limited organizational processes to engage a wide-range of interprofessional services in the care of this group. There was no consistent reporting of outcomes or processes in place to measure the impact of interprofessional services for this population.ConclusionsThis study provides important insights into the current state of interprofessional primary care for adults with IDD in Ontario and highlight a critical need for further work in the field to develop organizational structures and processes to engage in team-based care and demonstrate the value of the approach for this population.

Project description:ImportanceImproving equity in organ transplant access for people with intellectual and developmental disabilities (IDD) is a topic of social discourse in mainstream media, state legislation, and national legislation. However, few studies have compared evaluation rates, transplant rates, and outcomes among adults with and without IDD.ObjectiveTo compare rates of kidney transplant and transplant-specific outcomes between propensity-score matched groups of adults with end-stage kidney disease (ESKD [also referred to as end-stage renal disease (ESRD)]) with and without co-occurring IDD.Design, setting, and participantsThis retrospective cohort study included all Medicare inpatient and outpatient standard analytical files from 2013 through 2020. A total of 1 413 655 adult Medicare beneficiaries with ESKD were identified. Propensity-score matching was used to balance cohorts based on age, sex, race, follow-up duration, and Charlson Comorbidity Index. The matched cohorts consisted of 21 384 adults with ESKD (10 692 of whom had IDD) and 1258 kidney transplant recipients (629 of whom had IDD). Data were analyzed between June 1, 2022, and August 1, 2022.ExposureIDD.Main outcomes and measuresEvaluation for kidney transplant, receipt of kidney transplant, perioperative complications, readmission, mortality, graft rejection, and graft failure.ResultsOf the 21 384 propensity-score matched adults with ESKD, the median (IQR) age was 55 (43-65) years, 39.2% were male, 27.4% were Black, 64.1% were White, and 8.5% identified as another race or ethnicity. After propensity score matching within the ESKD cohort, 633 patients with IDD (5.9%) received a kidney transplant compared with 1367 of adults without IDD (12.8%). Adults with IDD were 54% less likely than matched peers without IDD to be evaluated for transplant (odds ratio, 0.46; 95% CI, 0.43-0.50) and 62% less likely to receive a kidney transplant (odds ratio, 0.38; 95% CI, 0.34-0.42). Among matched cohorts of kidney transplant recipients, rates of perioperative complications, readmission, and graft failure were similar for adults with and without IDD.Conclusions and relevanceUsing the largest cohort of adult kidney transplant recipients with IDD to date, the study team found that rates of evaluation and transplant were lower despite yielding equivalent outcomes. These data support consideration of adults with IDD for kidney transplant and underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population.

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Delivery of epilepsy care to adults with intellectual and developmental disabilities.

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Delivery of epilepsy care to adults with intellectual and developmental disabilities.

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