Advocacy for colorectal cancer screening and awareness in people with intellectual disability.
Ontology highlight
ABSTRACT:
SUBMITTER: Satge D
PROVIDER: S-EPMC10331771 | biostudies-literature | 2023 Jun
REPOSITORIES: biostudies-literature
Publications
Advocacy for colorectal cancer screening and awareness in people with intellectual disability.
Satgé Daniel D Habib-Hadef Sarah S Otandault Amaëlle A Samalin Emmanuelle E Trétarre Brigitte B
Journal of gastrointestinal oncology 20230425 3
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Project description:ImportanceBreast cancer-specific mortality is increased among women with intellectual disability (ID), and knowledge about participation in breast cancer screening in this group is needed.ObjectiveTo examine participation in the Danish national breast cancer screening program among women with ID compared with women without ID.Design, setting, and participantsThis dynamic population-based cohort study assessed participation in the Danish national breast cancer screening program initiated in 2007, targeting women aged 50 to 69 years with a screening interval of 2 years. In all, 6357 women with ID born between 1941 and 1967 and eligible for the screening program were identified in national registers. Women entered the study between January 1, 2007, and December 31, 2017. Subsequently, 273 women were excluded due to a history of carcinoma in situ or breast cancer, and 489 due to registration errors in registers. Each woman was individually age-matched with 10 women without ID (reference group). All women were followed up until March 31, 2021, or censoring (due to death, carcinoma in situ, or breast cancer). Data were analyzed from December 1, 2021, to June 31, 2022.ExposuresIntellectual disability was defined as being registered with an ID diagnosis or a diagnosis most likely leading to ID or residing at an institution for persons with ID.Main outcomes and measuresParticipation in breast cancer screening (fully, partly, and never).ResultsA total of 5595 women with ID and 49 423 age-matched women in the reference group were included in the analysis. Of these, 2747 women with ID (49%) and 24 723 in the reference group (50%) were 50 years of age at study entry; for those older than 50 years, the median age was 51 years (IQR, 50-58 years) in both groups. In all, 1425 women with ID (25%) were fully screened according to guidelines for the Danish breast cancer screening program compared with 30 480 women in the reference group (62%). Women with ID had nearly 5 times higher odds of never being screened compared with the reference group (odds ratio, 4.90 [95% CI, 4.60-5.22]). In all, 2498 women with ID (45%) and 6573 in the reference group (13%) were never screened. The proportion of never-screened women increased with severity of ID, from 834 of 2287 (36%) among women with mild ID to 173 of 212 (82%) among women with profound ID.Conclusions and relevanceThe findings of this cohort study suggest that women with ID are markedly less likely to participate in breast cancer screening compared with women without ID. These findings further suggest a need for tailored guidelines and approaches for breast cancer screening in this group of women.
| S-EPMC9856850 | biostudies-literature
Project description:Electroconvulsive therapy (ECT) is a highly effective treatment option for severe mental illness. Although people with intellectual disability (ID) have similar prevalence rates of mental disorders in comparison to the general population their access to ECT remains challenging. A systematic literature review was carried out on treatment with ECT in patients with ID and a case report on a patient with ID who underwent ECT is presented, to highlight a typical clinical routine. A total of 100 articles with 208 different case reports were retrieved. In summary, the results underline the effectiveness of ECT in people with ID, with side effects comparable to those in the general population. The ECT is effective in the treatment of severe affective and psychotic disorders and particularly in people with catatonia. The use of ECT can improve the patient's mental health and quality of life and is often a life-saving treatment option. The prophylaxis of relapses should be included as early as possible in the planning process. Providing an easy access to ECT treatment for people with ID is corroborated by its effectiveness and is in line with the right to equal treatment in accordance with article 25 of the United Nations Convention on the Rights of Persons with Disabilities.
| S-EPMC11876283 | biostudies-literature
Project description:Under-screening for cancer may contribute to a greater disease burden in individuals with intellectual and developmental disabilities (IDD) as their life expectancy increases. In 2008, the province of Ontario launched Canada's first population-based colorectal cancer screening program. Our objectives were to compare the proportions of Ontarians with and without IDD who have undergone colorectal cancer screening and to examine factors associated with screening uptake among Ontarians with IDD. Records for Ontario residents 50-64 years of age were linked across various administrative health and social services datasets to identify individuals with IDD and to select a random sample of the age-equivalent Ontario population without IDD as a comparison group. Logistic regression models were fit to examine the odds of screening uptake among individuals with IDD while controlling for age, sex, urban or rural residence, neighbourhood income quintile, expected use of health care resources, and being enrolled with or seeing a physician in a patient enrolment model (any of several primary care practice models designed to improve patient access and quality of care in Ontario), and to examine the association between these variables and colorectal cancer screening in the IDD population. The odds of having had a fecal occult blood test in the previous two years and being up-to-date with colorectal tests were 32% and 46% lower, respectively, for Ontarians with IDD compared to those without IDD. Being older, female, having a greater expected use of health care resources, and being enrolled with or seeing a physician in a primary care patient enrolment model were all significantly associated with higher odds of having been screened for colorectal cancer in the IDD population. These findings underscore the need for targeted interventions aimed at making colorectal cancer screening more equitable.
| S-EPMC4331499 | biostudies-other
Project description:Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services.A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families' organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP.Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential participants can identify themselves with the individuals used in promotional study material, making direct contact with their families at the start of the study, and closely monitoring the implementation of the educational intervention.ClinicalTrials.gov Identifier: NCT00519311.
| S-EPMC3560226 | biostudies-literature
Project description:BackgroundAttention-deficit hyperactivity disorder (ADHD) is common among people with intellectual disability. Diagnosing ADHD in this clinically and cognitively complex and diverse group is difficult, given the overlapping psychiatric and behavioural presentations. Underdiagnoses and misdiagnoses leading to irrational polypharmacy and worse health and social outcomes are common. Diagnostic interviews exist, but are cumbersome and not in regular clinical use.AimsWe aimed to develop a screening tool to help identify people with intellectual disability and ADHD.MethodA prospective cross-sectional study, using STROBE guidance, invited all carers of people with intellectual disability aged 18-50 years open to the review of the psychiatric team in a single UK intellectual disability service (catchment population: 150 000). A ten-item questionnaire based on the DSM-V ADHD criteria was circulated. All respondents' baseline clinical characteristics were recorded, and the DIVA-5-ID was administered blinded to the individual questionnaire result. Fisher exact and multiple logistic regressions were conducted to identify relevant questionnaire items and the combinations that afforded best sensitivity and specificity for predicting ADHD.ResultsOf 78 people invited, 39 responded (26 men, 13 women), of whom 30 had moderate-to-profound intellectual disability and 38 had associated comorbidities and on were medication, including 22 on psychotropics. Thirty-six screened positive for ADHD, and 24 were diagnosed (16 men, eight women). Analysis showed two positive responses on three specific questions to have 88% sensitivity and 87% specificity, and be the best predictor of ADHD.ConclusionsThe three-question screening is an important development for identifying ADHD in people with intellectual disability. It needs larger-scale replication to generate generalisable results.
| S-EPMC8503915 | biostudies-literature
Project description:BackgroundCorona virus disease 2019 (COVID-19) has been announced as a new coronavirus disease by the World Health Organization. At the time of writing this article (April 2020), the world is drastically influenced by the COVID-19. Recently, the COVID-19 Open Research Dataset (CORD-19) was published. For researchers on ID such as ourselves, it is of key interest to learn whether this open research dataset may be used to investigate the virus and its consequences for people with an ID.MethodsFrom CORD-19, we identified full-text articles containing terms related to the ID care and applied a text mining technique, specifically the term frequency-inverse document frequency analysis in combination with K-means clustering.ResultsTwo hundred fifty-nine articles contained one or more of our specified terms related to ID. We were able to cluster these articles related to ID into five clusters on different topics, namely: mental health, viral diseases, diagnoses and treatments, maternal care and paediatrics, and genetics.ConclusionThe CORD-19 open research dataset consists of valuable information about not only COVID-19 disease but also ID and the relationship between them. We suggest researchers investigate literature-based discovery approaches on the CORD-19 and develop a new dataset that addresses the intersection of these two fields for further research.
| S-EPMC7264798 | biostudies-literature
Project description:BackgroundThe World Health Organisation's vision of eliminating cervical cancer as a public health problem is achievable, but elimination must be achieved equitably, including for people with intellectual disability. A better understanding of cervical screening within the context of the lives of people with intellectual disability is needed. This study systematically reviewed research on the rates of cervical screening participation among people with intellectual disability, and facilitators and barriers that affect participation.MethodSix electronic databases were systematically searched: MEDLINE, CINAHL, Scopus, PsycINFO, Embase and Pro-Quest Central Social Sciences Collection. Empirical studies published between 1986 and 2023, in English language peer-reviewed journals were eligible for inclusion. Further articles were identified through forward and backward citation tracking, and hand-searching the index lists of two key journals. Two authors screened the studies, extracted the data and collated study outcomes using a standardised software program. A meta-analysis was performed using the DerSimonian and Laird method to estimate pooled effect sizes in prevalence rates and odds ratios (ORs). The socio-ecological model (SEM) was used as a framework to thematically analyse facilitators and barriers impacting participation in cervical screening.ResultsSixty-three articles met the inclusion criteria. Of these, 42 reported on rates of cervical screening participation and 24 reported on facilitators or barriers to cervical screening for people with intellectual disability. Overall, the studies reported a screening prevalence of 35% (95% CI: 26% to 45%), indicating that just over a third of people with intellectual disability have had cervical screening. The pooled odds ratio of 0.30 (95% CI: 0.23 to 0.41) indicated that people with intellectual disability are significantly less likely to have a cervical screening test compared with people without intellectual disability. Most studies examined individual and interpersonal factors impacting cervical screening. These included: (i) fear and anxiety among people with intellectual disability, (ii) misassumptions preventing screening participation, (iii) the role of support people, (iv) the need for education, (v) accessible information, and time to prepare for screening, (vi) patient-provider communication including challenges obtaining informed consent, and (vii) healthcare provider lack of confidence.ConclusionFuture research, policy and practice efforts must address barriers to cervical screening participation among people with intellectual disability and ensure these efforts are co-produced and community-led. This is critical to ensuring equity in global and local efforts to eliminate cervical cancer.
| S-EPMC11310793 | biostudies-literature
Project description:This data has been described in the following article: Dias et al., American Journal of Human Genetics, 2016, and its further analysis can be freely submitted for publication. For information on the proper use of data shared by the Wellcome Trust Sanger Institute(including information on acknowledgement), please see http://www.sanger.ac.uk/datasharing/
2016-07-12 | E-ERAD-520 | biostudies-arrayexpress
Project description:PurposeOne quarter of people with epilepsy have an intellectual disability (ID) and one fifth of people with an ID have epilepsy. Both conditions are associated with higher levels of morbidity, stigma and premature mortality. There have been calls for action to promote more research in this group. We examined if this group are represented adequately in current research.MethodsThe proportion of research output in epilepsy conferences and publications relevant to ID and the proportion in ID conferences and publications on epilepsy for 2015-2016 were identified. As the percentage of children in the population with epilepsy is 17%, research output of this group was compared with the ID group. Recognised material was classified based on whether it applied to general epilepsy/ID research, children with epilepsy or people with epilepsy and ID. Data was analysed to determine the proportion of presented research specifically identifying people with epilepsy and ID.ResultsFewer than 2% of presentations at epilepsy conferences specifically related to the ID and epilepsy group compared to 15% relating to children with epilepsy. Similarly only 1.4% of the research presented at major ID conferences related to those with people with epilepsy and ID. About 5% of published research in the field of epilepsy related to those with ID as compared with 24% for children with epilepsy. Twelve percent of published research in ID specifically identified epilepsy.ConclusionPublications and conference presentations, on the population with epilepsy and comorbid ID is under-represented. Increased research in this area might assist in improving the quality of care for this relatively neglected group.
| S-EPMC6013187 | biostudies-literature
Project description:Screening for colorectal cancer (CRC) provides an effective strategy for early detection and prevention of the disease; however, global screening rates are still low. This study aims at assessing the awareness of CRC risk factors, warning signs, and attitudes towards CRC guidelines and screening modalities, in order to identify the barriers to and correlates of CRC screening in the Lebanese population. A self-administered questionnaire was distributed to 371 participants in the largest health care medical center in Lebanon. A validated 12- and 9-item Cancer Awareness Measurement questionnaire was used to assess participants' awareness of CRC risk factors and warning signs. 83% and 67% of participants were not aware of CRC risk factors and warning signs, respectively, 15% have previously undergone CRC screening, 56% were aware of the necessity for screening, and 43% were willing to undergo screening. Factors affecting awareness of the necessity for CRC screening, past screening and willingness to screen included awareness of risk factors and warning signs, undergoing regular physician check-ups, having a family physician as a primary source of knowledge of CRC, and knowing a family member or friend diagnosed with CRC. Barriers to screening were related to participants' evaluation of the screening technique and misconceptions about this disease. Serious active measures should be taken by health care sectors, authoritative groups, primary care physicians, and awareness campaigns to fill the gap in awareness of this disease and to alleviate the barriers and misconceptions around it.
| S-EPMC6634322 | biostudies-literature