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106 result(s) for "Mahar, Alyson"
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How are adults with intellectual and/or developmental disabilities represented, included and engaged in cancer research: A scoping review protocol
Cancer research has shifted to highlight and empower the voices and experiences of patients in informing and guiding research. Adults with intellectual and/or developmental disabilities experience worse cancer-related outcomes compared to those without disabilities, including lower screening rates, more advanced stages at diagnosis, and lower survival likelihood. However, limited research has been conducted on how they are involved in cancer research. To improve how cancer-related care is provided to adults with intellectual and/or developmental disabilities, it is imperative that they are included in research that affects them. The objective of this scoping review is to explore and synthesize how adults with intellectual and/or developmental disabilities are represented, involved, and engaged in cancer research. This study will follow the JBI methodology for scoping reviews. Embase, Medline, PsycINFO and CINAHL will be searched to identify published studies. Based on timing of the introduction of the United Nations on the Rights of Persons with Disabilities, searches will be conducted from 2006 onwards. There will be no language restrictions. Eligible studies will include primary cancer-related research that focuses on adults with intellectual and/or developmental disabilities and/or those involved in their care, including qualitative, quantitative, and mixed methods research. Two independent reviewers will screen titles, abstracts, conduct full text reviews, and extract information on how participants were recruited in research, and/or identified in administrative quantitative studies, and how they were involved. Information will also be extracted on how adults with intellectual and/or developmental disabilities were involved in the study based on the International Association for Public Participation spectrum (inform, consult, involve, collaborate, and empower). Our findings will help us better understand how adults with intellectual and/or developmental disabilities are engaged in cancer research and identify potential next steps for enhancing accessibility and inclusion in cancer research.
The effect of a severe psychiatric illness on colorectal cancer treatment and survival: A population-based retrospective cohort study
To identify inequalities in cancer survival rates for patients with a history of severe psychiatric illness (SPI) compared to those with no history of mental illness and explore differences in the provision of recommended cancer treatment as a potential explanation. The universal healthcare system in Ontario, Canada. Colorectal cancer (CRC) patients diagnosed between April 1st, 2007 and December 31st, 2012. SPI history (schizophrenia, schizoaffective disorders, other psychotic disorders, bipolar disorders or major depressive disorders) was determined using hospitalization, emergency department, and psychiatrist visit data and categorized as 'no history of mental illness, 'outpatient SPI history', and 'inpatient SPI history'. Cancer-specific survival, non-receipt of surgical resection, and non-receipt of adjuvant chemotherapy or radiation. 24,507 CRC patients were included; 482 (2.0%) had an outpatient SPI history and 258 (1.0%) had an inpatient SPI history. Individuals with an SPI history had significantly lower survival rates and were significantly less likely to receive guideline recommended treatment than CRC patients with no history of mental illness. The adjusted HR for cancer-specific death was 1.69 times higher for individuals with an inpatient SPI (95% CI 1.36-2.09) and 1.24 times higher for individuals with an outpatient SPI history (95% CI 1.04-1.48). Stage II and III CRC patients with an inpatient SPI history were 2.15 times less likely (95% CI 1.07-4.33) to receive potentially curative surgical resection and 2.07 times less likely (95% CI 1.72-2.50) to receive adjuvant radiation or chemotherapy. These findings were consistent across multiple sensitivity analyses. Individuals with an SPI history experience inequalities in colorectal cancer care and survival within a universal healthcare system. Increasing advocacy and the availability of resources to support individuals with an SPI within the cancer system are warranted to reduce the potential for unnecessary harm.
Second malignancies after radiotherapy for prostate cancer: systematic review and meta-analysis
Objective To determine the association between exposure to radiotherapy for the treatment of prostate cancer and subsequent second malignancies (second primary cancers).Design Systematic review and meta-analysis of observational studies.Data sources Medline and Embase up to 6 April 2015 with no restrictions on year or language.Study selection Comparative studies assessing the risk of second malignancies in patients exposed or unexposed to radiotherapy in the course of treatment for prostate cancer were selected by two reviewers independently with any disagreement resolved by consensus.Data extraction and synthesis Two reviewers independently extracted study characteristics and outcomes. Risk of bias was assessed with the Newcastle-Ottawa scale. Outcomes were synthesized with random effects models and Mantel-Haenszel weighting. Unadjusted odds ratios and multivariable adjusted hazard ratios, when available, were pooled.Main outcome measures Second cancers of the bladder, colorectal tract, rectum, lung, and hematologic system.Results Of 3056 references retrieved, 21 studies were selected for analysis. Most included studies were large multi-institutional reports but had moderate risk of bias. The most common type of radiotherapy was external beam; 13 studies used patients treated with surgery as controls and eight used patients who did not undergo radiotherapy as controls. The length of follow-up among studies varied. There was increased risk of cancers of the bladder (four studies; adjusted hazard ratio 1.67, 95% confidence interval 1.55 to 1.80), colorectum (three studies; 1.79, 1.34 to 2.38), and rectum (three studies; 1.79, 1.34 to 2.38), but not cancers of the hematologic system (one study; 1.64, 0.90 to 2.99) or lung (two studies; 1.45, 0.70 to 3.01), after radiotherapy compared with the risk in those unexposed to radiotherapy. The odds of a second cancer varied depending on type of radiotherapy: treatment with external beam radiotherapy was consistently associated with increased odds while brachytherapy was not. Among the patients who underwent radiotherapy, from individual studies, the highest absolute rates reported for bladder, colorectal, and rectal cancers were 3.8%, 4.2%, and 1.2%, respectively, while the lowest reported rates were 0.1%, 0.3%, and 0.3%.Conclusion Radiotherapy for prostate cancer was associated with higher risks of developing second malignancies of the bladder, colon, and rectum compared with patients unexposed to radiotherapy, but the reported absolute rates were low. Further studies with longer follow-up are required to confirm these findings.
American Joint Committee on Cancer acceptance criteria for inclusion of risk models for individualized prognosis in the practice of precision medicine
The American Joint Committee on Cancer (AJCC) has increasingly recognized the need for more personalized probabilistic predictions than those delivered by ordinal staging systems, particularly through the use of accurate risk models or calculators. However, judging the quality and acceptability of a risk model is complex. The AJCC Precision Medicine Core conducted a 2-day meeting to discuss characteristics necessary for a quality risk model in cancer patients. More specifically, the committee established inclusion and exclusion criteria necessary for a risk model to potentially be endorsed by the AJCC. This committee reviewed and discussed relevant literature before creating a checklist unique to this need of AJCC risk model endorsement. The committee identified 13 inclusion and 3 exclusion criteria for AJCC risk model endorsement in cancer. The emphasis centered on performance metrics, implementation clarity, and clinical relevance. The facilitation of personalized probabilistic predictions for cancer patients holds tremendous promise, and these criteria will hopefully greatly accelerate this process. Moreover, these criteria might be useful for a general audience when trying to judge the potential applicability of a published risk model in any clinical domain.
Community water fluoridation exposure and dental caries experience in newly enrolled members of the Canadian Armed Forces 2006–2017
Objectives This cross-sectional study examines the dental caries experience of new Canadian Armed Forces (CAF) members in relation to enrollment from municipalities with and without water fluoridation. Methods The study population consisted of recruits who enrolled in the CAF between 2006 and 2017 with an enrollment address in municipalities with known fluoridation status ( n  = 24,552). Odontogram statistics from dental examinations were used to calculate the number of decayed, missing, and filled teeth (DMFT) and tooth surfaces (DMFS) for each recruit. The average difference between recruits from municipalities with and without fluoridation was determined using a linear regression model which adjusted for confounding by age and gender and allowed effect modification based on socio-economic status. Results The average recruit was male, 24 years of age, with 5.6 DMFT and 11.6 DMFS. After adjusting for age and gender, recruits residing in municipalities with water fluoridation had lower DMFT by 0.67 (CI − 0.55, − 0.79) points and lower DMFS by 1.77 (− 1.46, − 2.09) points. When allowing for effect modification by median income quintile of the recruits’ home census tract, the average reduction in DMFT and DMFS was similar in all income quintiles, with average reductions in DMFT ranging from 0.47 to 1.02 and average reductions in DMFS ranging from 1.33 to 2.70. Conclusion Residence in a municipality with water fluoridation was associated with reduced caries experience in a national sample of newly enrolled CAF members. The benefits of water fluoridation were uniform across neighbourhood income and military rank classes.
Validation of algorithms to identify human immunodeficiency virus cases using administrative data in Manitoba
Objective Population-based administrative data are valuable for describing human immunodeficiency virus (HIV) cases, and their health status and outcomes. Our objective was to validate algorithms consisting of physician visits, hospitalizations, and antiretroviral prescriptions against positive confirmatory HIV laboratory tests to identify individuals living with HIV. Methods The primary validation cohort consisted of adult Manitoban residents with at least 3 years of health coverage between 2007 and 2018. Positive confirmatory HIV tests from the provincial laboratory were the reference standard. We evaluated 15 algorithms requiring 2 or 3 years of administrative data (hospital, physician, and prescription records) to ascertain cases. Seven measures of accuracy were estimated: sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), Youden’s J , kappa, and area under the receiver operating characteristic curve (AUC) and their 95% confidence intervals. Validity was estimated for pregnant females. Results The primary validation cohort included 966,507 individuals, of whom 1452 (0.2%) were HIV cases. Algorithm sensitivity ranged from 82.8% to 97.5%. PPV ranged from 51.8% to 97.8%. Youden’s J ranged from 0.83 to 0.97. Kappa ranged from 0.68 to 0.93. AUC ranged from 0.91 to 0.99. Conclusion Researchers have a range of algorithms to ascertain HIV cases in administrative data; selection of an appropriate algorithm depends on the user goal. To maximize performance to distinguish HIV cases and non-cases while minimizing data requirements, an algorithm based on three or more physician visits in 2 years is recommended. Further validation in other provinces and territories will assess the generalizability of these findings.
Stage at diagnosis and survival in patients with cancer and a pre-existing mental illness: a meta-analysis
IntroductionIndividuals with a pre-existing mental illness, especially those experiencing reduced social, occupational and functional capacity, are at risk for cancer care disparities. However, uncertainty surrounding the effect of a mental illness on cancer outcomes exists.MethodsWe conducted a systematic review and meta-analysis of observational studies using MEDLINE and PubMed from 1 January 2005 to 1 November 2018. Two reviewers evaluated citations for inclusion. Advanced stage was defined as regional, metastatic or according to a classification system. Cancer survival was defined as time survived from cancer diagnosis. Pooled ORs and HRs were presented. The Newcastle-Ottawa bias risk assessment scale was used. Random-effects models used the Mantel-Haenszel approach and the generic inverse variance method. Heterogeneity assessment was performed using I2.Results2381 citations were identified; 28 studies were included and 24 contributed to the meta-analysis. Many demonstrated methodological flaws, limiting interpretation and contributing to significant heterogeneity. Data source selection, definitions of a mental illness, outcomes and their measurement, and overadjustment for causal pathway variables influenced effect sizes. Pooled analyses suggested individuals with a pre-existing mental disorder have a higher odds of advanced stage cancer at diagnosis and are at risk of worse cancer survival. Individuals with more severe mental illness, such as schizophrenia, are at a greater risk for cancer disparities.DiscussionThis review identified critical gaps in research investigating cancer stage at diagnosis and survival for individuals with pre-existing mental illness. High-quality research is necessary to support quality improvement for the care of psychiatric patients and their families during and following a cancer diagnosis.
Mental health service use among Canadian veterans within the first 5 years following service: methodological considerations for comparisons with the general population
IntroductionPrevious research comparing veteran and civilian mental health (MH) outcomes often assumes stable rates of MH service use over time and relies on standardisation or restriction to adjust for differences in baseline characteristics. We aimed to explore the stability of MH service use in the first 5 years following release from the Canadian Armed Forces and the Royal Canadian Mounted Police, and to demonstrate the impact of using increasingly stringent matching criteria on effect estimates when comparing veterans with civilians, using incident outpatient MH encounters as an example.MethodsWe used administrative healthcare data from veterans and civilians residing in Ontario, Canada to create three hard-matched civilian cohorts: (1) age and sex; (2) age, sex and region of residence; and (3) age, sex, region of residence and median neighbourhood income quintile, while excluding civilians with a history of long-term care or rehabilitation stay or receipt of disability/income support payments. Extended Cox models were used to estimate time-dependent HRs.ResultsAcross all cohorts, time-dependent analyses suggested that veterans had a significantly higher hazard of an outpatient MH encounter within the first 3 years of follow-up than civilians, but differences were attenuated in years 4–5. More stringent matching decreased baseline differences in unmatched variables and shifted the effect estimates, while sex-stratified analyses revealed stronger effects among women compared with men.ConclusionsThis methods-focused study demonstrates the implications of several study design decisions that should be considered when conducting comparative veteran and civilian health research.
Cancer in adults with intellectual disability: a systematic review of prevalence and incidence
Background The epidemiology and pattern of cancer in people with an intellectual disability is poorly documented. Emerging evidence reports that a different profile and trajectory of cancer burden is experienced in this population. The prevalence and incidence of cancer in this group have not been systematically synthesised. This review will address a significant gap in the evidence base. Methods The Joanna Briggs Prevalence and Incidence methodology was used to guide the conduct of this review. Reporting the review adheres to the PRISMA checklist. Observational studies reporting prevalence and incidence of cancer and cancer subtypes in adults with intellectual disability were identified through searches of Embase, MEDLINE, CINAHL, PsycINFO, Web of Science, and grey literature from database inception dates to May 2025. A modified JBI Critical Appraisal Checklist was used to assess study quality. Meta-analyses were completed using Meta-XL., with pooled estimates reported where appropriate and narrative synthesis provided for heterogeneous results. Results Two articles reported cancer prevalence and ten reported cancer incidences. The pooled prevalence was 2% (95% CI: 1–3%). Incidence estimates varied from 1.0 to 4.7% but were from studies with different designs and follow-up periods, limiting direct comparability. Overall, findings tentatively suggest a similar to lower overall cancer prevalence and incidence to the general population, but some studies reported higher rates of ovarian, testicular and unknown primary cancers. The methodological quality of most ( n  = 11) studies was high. Meta-analyses showed substantial statistical heterogeneity for included incidence studies reflecting methodological and clinical differences. Conclusions Comparisons across studies are limited by heterogeneity in definitions of intellectual disability, study settings and cancer case identification. Challenges in synthesising cancer data in this population highlight the urgent need to identify people with intellectual disabilities at a population level and in cancer registries to help develop evidence that supports policy and practice in this area. Robust evidence is needed to inform clinical decision-making and policy development as the current epidemiological evidence is currently insufficient for this purpose.
Gaps in childhood immunizations and preventive care visits during the COVID-19 pandemic: a population-based cohort study of children in Ontario and Manitoba, Canada, 2016–2021
Objective We aimed to estimate the changes to the delivery of routine immunizations and well-child visits through the pandemic. Methods Using linked administrative health data in Ontario and Manitoba, Canada (1 September 2016 to 30 September 2021), infants <12 months old (N=291,917 Ontario, N=33,994 Manitoba) and children between 12 and 24 months old (N=293,523 Ontario, N=33,001 Manitoba) exposed and unexposed to the COVID-19 pandemic were compared on rates of receipt of recommended a) vaccinations and b) well-child visits after adjusting for sociodemographic measures. In Ontario, vaccinations were captured using physician billings database, and in Manitoba they were captured in a centralized vaccination registry. Results Exposed Ontario infants were slightly more likely to receive all vaccinations according to billing data (62.5% exposed vs. 61.6% unexposed; adjusted Relative Rate (aRR) 1.01 [95% confidence interval (CI) 1.00-1.02]) whereas exposed Manitoba infants were less likely to receive all vaccines (73.5% exposed vs. 79.2% unexposed; aRR 0.93 [95% CI 0.92-0.94]). Among children exposed to the pandemic, total vaccination receipt was modestly decreased compared to unexposed (Ontario aRR 0.98 [95% CI 0.97-0.99]; Manitoba aRR 0.93 [95% CI 0.91-0.94]). Pandemic-exposed infants were less likely to complete all recommended well-child visits in Ontario (33.0% exposed, 48.8% unexposed; aRR 0.67 [95% CI 0.68-0.69]) and Manitoba (55.0% exposed, 70.7% unexposed; aRR 0.78 [95% CI 0.77-0.79]). A similar relationship was observed for rates of completed well-child visits among children in Ontario (aRR 0.78 [95% CI 0.77-0.79]) and Manitoba (aRR 0.79 [95% CI 0.77-0.80]). Conclusion Through the first 18 months of the pandemic, routine vaccines were delivered to children < 2 years old at close to pre-pandemic rates. There was a high proportion of incomplete well-child visits, indicating that developmental surveillance catch-up is crucial.