Intellectual Or Developmental Disabilities Research Articles

Breast (female), colorectal, and lung cancer survival in people with intellectual or developmental disabilities: A population-based retrospective cohort study.

Cancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). There is little empirical evidence documenting survival or comparing outcomes to those without IDD. This study investigated the association between IDD and cancer survival among adults with breast(female), colorectal, or lung cancer. A population-based retrospective cohort study was conducted in Ontario, Canada, with routinely collected data. Patients with breast, colorectal, or lung cancer were included (2007‒2019). IDD status before cancer was determined using an established administrative data algorithm. The outcomes of interest included death from any cause and death from cancer. Cox proportional hazards models and competing events analyses using multivariable cause-specific hazards regression were completed. Analyses were stratified by cancer type. Interactions with age, sex, and stage at diagnosis, as well as sensitivity analyses, were completed. The final cohorts included 123,695 breast, 98,809 colorectal, and 116,232 lung cancer patients. Individuals with IDD experienced significantly worse survival than those without IDD. The adjusted hazard ratios of all-cause death were 2.74 (95% CI 2.41‒3.12), 2.42 (95% CI 2.18‒2.68), and 1.49 (95% CI 1.34‒1.66) times higher for breast, colorectal, and lung cancer patients with IDD relative to those without. These findings were consistent for cancer-specific deaths. With few exceptions, worse survival for people with IDD persisted regardless of stage at diagnosis. People with IDD experienced worse cancer survival than those without IDD. Identifying and intervening on the factors and structures responsible for survival disparities is imperative.

Adolescents who have siblings with intellectual or developmental disabilities (IDDs): A systematic review

Adolescents who have siblings with intellectual or developmental disabilities (IDDs): A systematic review

Investigating inequalities in cancer staging and survival for adults with intellectual or developmental disabilities and cancer: A population-based study in Manitoba, Canada

BackgroundCancer is a leading cause of death among adults living with intellectual or developmental disabilities (IDD). However, few epidemiological studies exist worldwide quantifying inequalities in cancer stage at diagnosis and survival for people with IDD relative to those without IDD. MethodsA population-based, retrospective cohort study was conducted using provincial health and social administrative data in Manitoba, Canada. Adults (≥18 years) with a cancer diagnosis between 2004 and 2017 were included. Lifetime IDD was identified before the cancer diagnosis using an established algorithm. Modified Poisson regression with robust error variance was used to estimate the association between IDD status and metastatic cancer at diagnosis. Multivariable Cox proportional hazards analyses were used to the effect of IDD on overall survival following the cancer diagnosis. ResultsThe staging and prognosis cohorts included 62,886 (n = 473 with IDD) and 74,143 (n = 592 with IDD) cancer patients, respectively. People living with IDD were significantly more likely to be diagnosed with metastatic cancer and die following their cancer diagnosis compared to those without IDD (RR=1.20; 95 % CI 1.05–1.38; HR= 1.53; 95 % CI 1.38–1.71). Significant heterogeneity by sex was identified for cancer survival (p = 0.005). DiscussionPeople with IDD had more advanced cancer stage at diagnosis and worse survival relative to those without IDD. Identifying and developing strategies to address the factors responsible that contribute to these disparities is required for improving patient-centred cancer care for adults with IDD.

Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: Apopulation-based cross-sectional study.

Cancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). Although studies have documented lower cancer screening rates, there is limited epidemiological evidence quantifying potential diagnostic delays. This study explores the risk of metastatic cancer stage for people with IDD compared to those without IDD among breast (female), colorectal, and lung cancer patients in Canada. Separate population-based cross-sectional studies were conducted in Ontario and Manitoba by linking routinely collected data. Breast (female), colorectal, and lung cancer patients were included (Manitoba: 2004-2017; Ontario: 2007-2019). IDD status was identified using established administrative algorithms. Modified Poisson regression with robust error variance models estimated associations between IDD status and the likelihood of being diagnosed with metastatic cancer. Adjusted relative risks were pooled between provinces using random-effects meta-analyses. Potential effect modification was considered. The final cohorts included 115,456, 89,815, and 101,811 breast (female), colorectal, and lung cancer patients, respectively. Breast (female) and colorectal cancer patients with IDD were 1.60 and 1.44 times more likely to have metastatic cancer (stage IV) at diagnosis compared to those without IDD (relative risk [RR], 1.60; 95% confidence interval [CI], 1.16-2.20; RR, 1.44; 95% CI, 1.24-1.67). This increased risk was not observed in lung cancer. Significant effect modification was not observed. People with IDD were more likely to have stage IV breast and colorectal cancer identified at diagnosis compared to those without IDD. Identifying factors and processes contributing to stage disparities such as lower screening rates and developing strategies to address diagnostic delays is critical.

Family carer and professional perceptions of the potential use of telehealth for behavioural support.

Telehealth (i.e. the use of technology across distance) is widespread in many fields. Although its use for behavioural support for people with intellectual or developmental disabilities (IDD) is emerging, there are no known studies examining stakeholder perceptions of this. A four-round Delphi consultation was conducted with 11 professionals and six family carers of children with IDD to generate consensus on what would influence participants' use of telehealth for behavioural support. Data were collected prior to the coronavirus pandemic. Thirty-six items reached consensus for professionals (26 advantages and 10 disadvantages/barriers) and 22 for family carers (8 advantages and 14 disadvantages/barriers). A range of solutions were also identified for the disadvantages/barriers. Participants were willing to use telehealth for behavioural support. However, disadvantages/barriers need to be addressed, and guidelines relating to the use of telehealth in this field are needed. We report a number of practice recommendations including combining telehealth with in-person supports where possible, incorporating video technologies, and considering client perspectives and confidence with telehealth methodologies.

Freeman Center for intellectual and developmental disabilities: Patient-centered interdisciplinary care

ObjectivesAdults with intellectual or developmental disabilities (IDD) face substantial barriers to accessing high-quality, patient-centered care. This paper describes the development and evolution of the Freeman Center, an integrated, interdisciplinary center developed using feedback from adults with IDD and their family members. MethodsWe evaluated the reach of the Freeman Center services and described the patient population. ResultsAs of November, 2022, 1068 patients were seen at the Freeman Center. These patients represent about 5 % of all people with IDD in Hamilton County Ohio, where the Freeman Center is located. On average in 2022, the Freeman Center provided approximately 380 primary care visits, 47 psychiatry visits, and 85 combined primary care and psychiatry service visits per month. ConclusionsPatient demographic characteristics are largely consistent with the general population of Hamilton County, indicating patients are representative of the county the clinic primarily serves. Further work is needed to evaluate patient outcomes at the Freeman Center.

Behavioral sleep medicine-The need for harmonization of clinical best practice outcome measures in children and adolescents with intellectual or developmental disabilities and restless sleep.

In behavioral medicine, sleep disorders, insomnia in particular, may be considered comorbidities and precipitating factors to intellectual or developmental disabilities (IDD). Nevertheless, sleep alterations have often been neglected in favor of daytime features and symptoms, albeit simple behavioral nighttime observations may disclose hypermotor features that characterize restless sleep. The root of most hypermotor restlessness is linked to central iron deficiency. The latter is often exacerbated by vitamin D deficiency (VDD), which interferes with both dopaminergic and serotonergic mechanisms. In this way, an imbalance affecting daytime behavior and mood is created. Several sleep-related motor disorders such as bruxism, periodic and aperiodic leg movements, Restless Legs Syndrome (RLS), and Restless Sleep Disorder (RSD) are commonly seen in Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorders (ASD). However, they are rarely diagnosed and often overlooked in affected children and adolescents. As a result, not only are these disorders not adequately addressed therapeutically, but their symptoms may be worsened by the side-effects of drugs used to contain disruptive daytime behavior, such as antipsychotics and antidepressants. In children with IDDs, obesity, inactivity and metabolic effects of antipsychotics often lead to Sleep Disordered Breathing (SDB), which is currently understood as an inflammatory state leading to “hyperactive” lethargy and further alterations of the hypoxic chain and vitamin D levels. Endorsing simple routine blood tests, including inflammatory markers such as C-reactive protein, ferritin, transferrin, and vitamin D levels, may favorably complement caregiver observations and ambulatory sleep recordings, leading to a sleep disorder diagnosis and consequent therapy. In fact, the treatment of SDB, RLS, and RSD has been copiously demonstrated to favorably impact vigilance, behavior, social competence, and academic skills in healthy and, to a greater extent, in IDD children. Thus, consulting and deliberating the root causes of functional and categorical diagnoses within a clinical framework may engender a more precise diagnosis and further benefit pediatric daytime and nighttime management of hyperactive behaviors.

A Self-Monitoring Intervention to Improve the Self-Determination of Individuals With Intellectual and Developmental Disability in a Postsecondary Educational Program

Self-determination skills are critical for improving life outcomes for individuals with intellectual or developmental disabilities (IDD). The recent growth of postsecondary education (PSE) programs for those with IDD has provided additional opportunities for teaching self-determination skills. This study used a multiple probe across participants design with six individuals with IDD. The intervention consisted of a self-determination choice-making curriculum along with the use of a self-monitoring checklist to increase self-determination skills. Data were analyzed using visual analysis. Results revealed gains in participants’ knowledge of choice-making steps with moderate effect size gains. Implications for practice and future research are discussed.

Prevalence of Secondary Traumatic Stress Among Direct Support Professionals in Intellectual and Developmental Disabilities Field.

Direct support professionals (DSPs) are deemed by existing literature as vital support to persons with intellectual or developmental disabilities (IDD). They may be exposed to the traumatic experiences of people with IDD with potential psychological implications. Secondary traumatic stress (STS) has been studied among related professionals across human services, but little is known among DSPs. The current study examines the prevalence of STS in a sample of DSPs. The results suggested that DSPs are exposed to traumatic experiences, and exposure to a greater number of traumatized clients is significantly correlated with symptoms of STS. At least 12.4% of DSPs in this sample met the diagnostic criteria for experiencing post-traumatic stress disorder (PTSD) symptoms. Also, results suggest STS differences in DSPs based on demographics.

Factors associated with use of medication for behavioral challenges in adults with intellectual and developmental disability

Background/AimsPersons with intellectual or developmental disabilities and who exhibit challenging behaviors are often prescribed medication to control behavior. Little is known about the environmental factors that may be associated with taking these medications. Methods and outcomesThis study examined the association between individual and intermediate or environmental factors and the documented use of medication for clients with intellectual or developmental disabilities (IDD) who exhibit challenging behavior, using the 2014−15 National Core Indicators Adult Consumer Survey dataset. Results and conclusionsIndividual-level variables associated with a higher likelihood of taking medication for persons with IDD exhibiting challenging behaviors included being of younger age, male gender, having moderate or severe intellectual disability, being ambulatory, communicating verbally, having a behavioral plan, requiring support for behavioral challenges, and having a history of mental illness. Environment-level variables included infrequently eating out and having less everyday choice. This study found that restrictions in opportunities to make choices in their life was associated with a greater likelihood of being on a medication for persons with IDD who exhibit challenging behavior. Living in group home settings also increased the likelihood of medication use. A limitation of the study is a lack of information on why medications were prescribed and whether they were intended to treat the challenging behavior. ImplicationsThis work has important implications for health providers, as addressing malleable social factors may provide an avenue for reducing challenging behaviors without the need for medication.

Use of a Short-term Psychiatric Inpatient Model to Address Problem Behavior Exhibited by Youth with Intellectual or Developmental Disabilities

ABSTRACT Children with intellectual or developmental disabilities (IDD) are more likely to have co-occurring mental health diagnoses and require hospitalization than their typically developing peers. Inpatient psychiatric treatment for this population can vary considerably and often include providers from numerous disciplines (e.g., psychiatrists, psychologists, social workers). We describe the results produced while treating this population of patients on a short-term inpatient and partial hospitalization psychiatric unit. By receiving multidisciplinary treatment from allied health professionals, including psychiatry, psychology, board-certified behavior analysts, and social work, we obtained an average reduction in problem behavior from admission to discharge from the psychiatric unit of 87.5%. Further statistical analysis of variables that may have contributed to this reduction in problem behavior did not show clear relations. That is, number of treatment sessions, number of medications, or behavioral function did not seem to differentially impact outcomes. This paper will describe the multidisciplinary treatment model and offer guidance to practitioners working with psychiatrically hospitalized youth with IDD.

Assessing processing speed among individuals with intellectual and developmental disabilities: A match-to-sample paradigm

ABSTRACT Speeded Matching (SpM) is a new processing speed match-to-sample test within the NIH Toolbox Cognitive Battery. It was designed to developmentally extend feasibility to younger children or individuals with intellectual or developmental disabilities (IDD). SpM reduces cognitive demands to tapping an identical match as opposed to judging and indicating whether two stimuli are identical. In this study, we piloted SpM among 148 participants with fragile X syndrome, Down syndrome, or other intellectual disabilities (chronological age mean = 17.8 years, sd = 5.4; nonverbal mental age mean = 65 months, sd = 19.4). SpM had a high feasibility (96%) and internal consistency (rxx = 0.98). It converged well with other measures of processing speed, fluid cognition, and nonverbal mental age and diverged appropriately from crystallized cognitive skills. The correlation between nonverbal mental age and SpM in the IDD sample was not significantly different than the correlation between chronological age and SpM in a separate sample of 118 neurotypical children (age mean = 3.9 years sd = 0.8). This study provides initial evidence for the reliability and validity of the new SpM task, which may be appropriate as an outcome measure of processing speed for future clinical trials. It is more feasible than tasks designed for adults; it is brief, easy to administer, and engaging for young children and older individuals with lower mental ages associated with IDD.

Transition to adulthood: prospective content in joint parent-youth conversations for young people with intellectual or developmental disabilities (IDD)

Problem and Objective Transition to adulthood for young people with (IDD) is challenging for both youth and parents. Prospection, an important human adaptive tool and critical for independent living, involves constructing, encoding, and remembering the future. It may be jointly enacted between parents and young people as they discuss the future. This study identified and described evidence of prospective content in parent-youth conversations about the transition to adulthood. Method This study involved the content analysis is of eight parent-youth conversations about this transition. Two mother-daughter, three father-daughter, and three mother-son dyads, representing a range of IDD diagnoses, provided 790 min of joint conversations and reflection on them. These conversations were examined for the following characteristics of prospection: simulation, reasoning about counterfactuals, constructing multiple possible futures, and episodic memory of the past. Findings Among the four characteristics, simulation and episodic memory of the past were used most frequently and reasoning about counterfactuals the least. Giving advice and scaffolding were additional strategies that emerged from the data. Conclusion Identifying how prospection may be fostered in joint parent-youth conversations provides a step toward future research.

Interventions for inappropriate sexual behavior in individuals with intellectual and developmental disabilities: A brief review.

Although prevalence rates vary, 6% to 28% of individuals with intellectual or developmental disabilities (IDDs) engage in inappropriate sexual behavior (ISB), ranging from public masturbation to sexually aggressive behavior. Along with increased risk for contacting the criminal justice system, people with IDDs who display ISB may encounter negative social consequences, restricted community access and barriers to independence, and a variety of counter-therapeutic outcomes. The purpose of the present review is to highlight recent, efficacious behavior-analytic treatments for ISB in individuals with IDDs. Ethical considerations and areas for future research will be discussed.

Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome.

Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants were 152 adolescents and adults (80 males, 72 females) with FXS who completed a measure of decisional capacity and a comprehensive battery of neurocognitive and psychiatric measures. Females outperformed males on all aspects of decisional capacity. The ability to understand aspects of the clinical trial had the strongest association with the ability to appreciate and reason about the decision. Scaffolding improved understanding, suggesting researchers can take steps to improve decisional capacity and the informed consent process.

Health care for individuals with fragile X Syndrome: Understanding access and quality

BackgroundPrevious research suggests that individuals with intellectual or developmental disabilities (IDD) may experience challenges accessing quality health care. Objective/HypothesisThis study explored parent perceptions of access and quality of health care services for children with fragile X syndrome (FXS), the leading hereditary cause of intellectual/developmental disabilities. MethodsNearly 600 primary caregivers of at least one child with FXS completed an online survey on access, barriers, and quality of health care for their family member with FXS (N = 731). ResultsIn a convenience sample of well-educated and affluent caregivers, the majority did not report experiencing difficulties with access to services. Caregivers of younger children and those with lower family incomes reported greater challenges with health care access. Nearly 40% of caregivers indicated that their child's PCP was not as knowledgeable about FXS-related needs as they would prefer, indicating a possible knowledge gap on the part of providers. ConclusionsThese factors represent potential barriers to quality health care for individuals with FXS, with potential lifelong effects ranging from delayed age of diagnosis to difficulty accessing a PCP in adulthood.

Leveled Texts for Adults With Intellectual or Developmental Disabilities: A Pilot Study

There is a dearth of appropriate reading material for adults with intellectual or developmental disabilities (IDDs). Often, a book’s content is relevant to younger audiences, or its reading level is inaccessible. In this pilot study, we determined which factors facilitate reading accuracy and comprehension for this population. We wrote and tested leveled texts that manipulated three variables: (a) complex versus simple words and syntax, (b) a single illustration versus symbols accompanying each word, and (c) engaging single versus multiple modalities when answering comprehension questions. Twenty adult readers with IDD participated. Readers made more errors while reading the complex and the symbol support books. Our manipulations did not facilitate reading comprehension. These results support the use of straightforward text and illustrations in books for adults with IDD. Following up on this pilot study through more focused research will help us to create material that is accessible and enjoyable to this community.

Implementation and evaluation of health passport communication tools in emergency departments

BackgroundPeople with IDD (intellectual or developmental disabilities) and their families consistently report dissatisfaction with their emergency department experience. Clear care plans and communication tools may not only improve the quality of patient care, but also can prevent unnecessary visits and reduce the likelihood of return visits. AimsTo evaluate communication tools to be used by people with IDD in psychiatric and general emergency departments in three different regions of Ontario. Methods and proceduresHealth passport communication tools were locally tailored and implemented in each of the three regions. A total of 28 questionnaires and 18 interviews with stakeholders (e.g., hospital staff, community agency representatives, families) were completed across the regions to obtain feedback on the implementation of health passports with people with IDD. Outcomes and resultsParticipants felt that the health passport tools provided helpful information, improved communication between patients with IDD and hospital staff, and were user friendly. Continued efforts are needed to work with communities on maintenance of this tool, ensuring all hospital staff are utilizing the information. Conclusions and implicationsThese findings emphasize the merits of health passport tools being implemented in the health system to support communication between patients with IDD and health care practitioners and the importance of tailoring tools to local settings.

Trends in the provision of residential educational placements available for young people with learning disabilities/autism in England

PurposeLittle is known about the characteristics of residential educational settings for young people with intellectual or developmental disabilities (IDD) in England. Previous research has focussed on the characteristics and experiences of the young people attending such settings rather than the setting itself; therefore, an overview of national provision is needed. The paper aims to discuss these issues.Design/methodology/approachAs part of a larger project, data were collected for all residential schools and colleges in England. Data relate to settings offering residential provision for at least 4 nights per week for 30 weeks per year, either at the school/college itself, or in an associated residential home. Due to the remit of the main project, settings offering placements only to young people aged under 16 were excluded. Data were collected from a range of sources, including school/college websites, Ofsted and Department for Education resources, and liaison directly with the setting.FindingsIn total, 342 residential educational settings were identified with 57 of these offering post-16 provisions only. A range of data is presented about these settings, including location, placement numbers and types available, age range catered for, special educational needs categories registered for, governance arrangements (e.g. LA maintained, privately owned, and charitable organisation), and Ofsted educational ratings.Originality/valueThese data provide a national overview of residential educational settings for young people with IDD. This enables a clearer picture of the location and type of provision offered and allows comparisons both within and between areas.

Stress in caregivers of individuals with intellectual or developmental disabilities: A systematic review of mindfulness-based interventions.

The efficacy of mindfulness-based interventions (MBIs) for stress and psychological distress in professional caregivers supporting individuals with intellectual or developmental disabilities (IDDs) is reviewed. Eight studies met inclusion criteria and were systematically reviewed, including RCTs and single-group designs. As per Reichow, Volkmar, and Cicchetti (Journal of Autism and Developmental Disorders, 38, 2008), three studies were classified as "adequate quality" and five were classified as "weak." There were inconsistent findings in relation to stress, with significant reductions or increases reported by caregivers following MBIs. MBIs consistently improved caregivers' ratings of distress. Process outcomes suggested increased mindful awareness, increased cognitive defusion and reduced thought suppression. Treatment effects were maintained or continued to grow at follow-up. Caregivers of individuals with IDDs face multiple challenges on a daily basis. This review supports, at least, short-term benefits for MBIs in the management of stress and distress in caregivers of individuals with IDDs.