Understanding the Intersection of Identity and Cancer Experience Among Racially, Ethnically, Gender and Sexual Minoritized Adolescents and Young Adults With Cancer.

OBJECTIVES: Adolescents and young adults (AYAs, 18-39 years) with cancer identifying as racially/ethnically minoritized or 2SLGBTQIA+ (Two-Spirit, lesbian, gay, bisexual, transgender, queer, intersex, asexual and "+" referring to other queer identities) have been underrepresented in cancer research. This study explores the aspects of identity that hold significance for these minoritized AYAs and how these facets impact their healthcare experiences. METHODS: Eligible participants comprised English-speaking AYAs who self-identified as racially/ethnically minoritized and/or 2SLGBTQIA+, were diagnosed with cancer between the ages of 15-39, currently aged > 18, and had received or were receiving cancer care within Canadian healthcare system. Additionally, four patient partners meeting the same criteria were recruited as research collaborators. Semi-structured one-on-one virtual interviews guided by an interview script were conducted, and qualitative analysis employed a framework approach. RESULTS: We recruited 23 participants from 4 Canadian provinces (mean age: 28, Range: 20-44); 17 identified as racially/ethnically minoritized, one as sexual/gender minoritized, and five as racially/ethnically and sexually/gender minoritized. Participants emphasized that their culture/ethnicity, religion/spirituality, sexuality, gender, family, career, and being an immigrant are important aspects of their identity, with only one participant recognizing their identity as a "person with cancer". A cancer diagnosis altered the aspects of identity deemed most significant by participants. Both visible and invisible aspects of identity shaped participants' experiences and influenced their level of trust in the healthcare system. CONCLUSION: Racially, ethnically, gender, or sexually minoritized AYAs with cancer place considerable importance on aspects of their identity that are shaped by their respective communities. Recognizing and respecting these identities are paramount for healthcare professionals to deliver safe and inclusive care.

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

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

RéSUMé: OBJECTIFS: Le cancer est l'une des principales causes de mortalité chez les personnes vivant avec des déficiences intellectuelles ou des troubles du développement (DI/TD). Il y a peu de preuves empiriques décrivant la survie de ces personnes lorsqu'elles sont atteintes d'un cancer ou comparant leurs résultats à ceux des personnes sans DI/TD. Notre étude porte sur l'association entre les DI/TD et la survie au cancer chez les adultes atteints de cancer du sein (femmes), du colorectum ou du poumon. MéTHODE: Une étude de cohorte rétrospective populationnelle a été menée en Ontario, au Canada, à l'aide de données recueillies systématiquement. Nous avons inclus les patientes et les patients atteints de cancer du sein, du colorectum ou du poumon (2007‒2019). Nous avons identifié la présence des DI/TD avant le cancer à l'aide d'un algorithme de traitement de données administratives reconnu. Les résultats d'intérêt étaient les décès de toutes causes et les décès dus au cancer. Nous avons appliqué des modèles des risques proportionnels de Cox et des analyses des événements concurrents en utilisant la régression multivariée des risques par cause. Nos analyses ont été stratifiées selon le type de cancer. Nous avons tenu compte des interactions avec l'âge, le sexe et le stade au diagnostic et effectué des analyses de sensibilité. RéSULTATS: Les cohortes finales ont inclus 123 695 personnes atteintes de cancer du sein, 98 809 atteintes de cancer colorectal et 116 232 atteintes de cancer du poumon. La survie des sujets ayant des DI/TD a été significativement moins bonne que celle des sujets sans DI/TD. Les rapports de risques instantanés ajustés pour les décès de toutes causes étaient 2,74 fois (IC de 95 % 2,41‒3,12), 2,42 fois (IC de 95 % 2,18‒2,68) et 1,49 fois (IC de 95 % 1,34‒1,66) plus élevés chez les personnes atteintes de cancer du sein, du colorectum et du poumon et ayant des DI/TD que chez les personnes sans DI/TD. Ces constatations ressortent pour tous les décès attribuables à des cancers particuliers. Avec peu d'exceptions, la survie moins bonne pour les personnes ayant des DI/TD persistait quel que soit le stade au moment du diagnostic. CONCLUSION: La survie au cancer était moins bonne chez les personnes ayant des DI/TD que chez celles n'ayant pas de DI/TD. Il est impératif d'identifier les facteurs et les structures responsables de ces disparités dans la survie et d'intervenir en conséquence.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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

BACKGROUND: Cancer 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. METHODS: A 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. RESULTS: The 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). DISCUSSION: People 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.

Mapping gender and sexual minority representation in cancer research: a scoping review protocol.

BACKGROUND: Addressing the risk of people from gender and sexual minority (GSM) groups experiencing inequities throughout the cancer continuum requires a robust evidence base. In this scoping review, we aim to map the literature on cancer outcomes among adults from GSM groups and the factors that influence them along the cancer continuum. METHODS: This mixed-methods scoping review will follow the approach outlined by JBI. We will systematically search electronic databases for literature in collaboration with a health sciences librarian. Two reviewers will screen titles and abstracts to determine eligibility based on inclusion criteria, and then retrieve full text articles for data extraction. Results will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. Quantitative data will be qualitized through a narrative interpretation and pooled with qualitative data. We will use meta-aggregation to synthesize findings. This protocol was developed in collaboration with GSM patient and public advisors. We will engage people from GSM groups, community organizations and knowledge users in disseminating results. INTERPRETATION: This review will direct future research efforts by expanding the wider body of research examining cancer disparities across the cancer continuum that GSM groups experience, identifying literature gaps and limitations, and highlighting relevant social determinants of health that influence cancer outcomes for adults from GSM groups.

A scoping review documenting cancer outcomes and inequities for adults living with intellectual and/or developmental disabilities.

INTRODUCTION: Emerging evidence suggests adults with intellectual and/or developmental disabilities (IDD) may be at risk of inequities in cancer experiences and outcomes. Individuals with IDD may experience multiple barriers that could worsen outcomes and experience. These barriers may be connected to features of IDD or the healthcare system overall. Future research and program planning to support adults with IDD and cancer must be informed by evidence that acknowledges potential disparities, underlying determinants, and knowledge deficits. OBJECTIVE: We conducted a scoping review to systematically map the evidence describing and comparing cancer-related outcomes along the cancer continuum from risk to mortality for adults with IDD. We identified specific factors observed to influence those outcomes. METHODS: We followed the expanded Arksey & O'Malley framework for conducting the scoping review. We searched for literature in PubMed and Embase databases. We abstracted cancer-related data, IDD-related data, and data related to physical and social determinants of health. RESULTS: Of the 2796 studies retrieved, 38 were included for review. Most studies focused on screening outcomes and experiences. Studies reported that adults with IDD experienced inequities at various points along the cancer continuum. Numerous social and physical determinants of health influenced the experiences and outcomes of adults with IDD. CONCLUSION: This scoping review identified significant gaps in the literature. Of note was the focus on cancer screening and lack of attention to larger systems of oppression that may influence poor cancer experiences and outcomes for adults with IDD. There is strong need to improve both quality and quantity of research in this area.

Integration of geriatric assessment into clinical oncology practice: A scoping review.

Sixty percent of newly diagnosed cancers occur in older adults and more complex planning is required to sustain quality care for older populations. Individualized care incorporating geriatric assessment can predict early mortality and treatment toxicity for older cancer patients. We mapped and summarized the available evidence on the integration of geriatric assessment into clinical oncology practice, and ascertained which domains have been implemented. We systematically searched bibliographic databases and trial registries for reports of clinical studies, clinical practice guidelines, systematic and non-systematic reviews, and grey literature published in English. We gathered data on study characteristics, geriatric domains and strategies evaluated, and relevant study objectives and findings. From a total of 10,124 identified citations, 38 articles met our eligibility criteria, 3 of which were clinical practice guidelines. Nearly half of these articles came from the United States. Domains of the geriatric assessment implemented in studies ranged from 1 to 12, with varied combinations. We identified 27 studies on strategies for implementing geriatric assessment and 24 studies on feasibility of implementing geriatric assessment, into clinical oncology practice. We also identified 3 main geriatric assessment models: 2 from the United States and 1 from Australia. Furthermore, we identified 2 reviews that reported varied components of geriatric assessment models. There is increasingly robust evidence to implement formal geriatric assessment in oncology practice. There remains a great deal of variation in the tools recommended to address each of the domains in a geriatric assessment, with only 1 guideline (American Society of Clinical Oncology guideline) settling on a specific best practice. Protocol registration: Open Science Framework osf.io/mec93.

Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities.

INTRODUCTION: There is increasing attention on the cancer burden for adults with intellectual and developmental disabilities (IDD). Emerging evidence suggests there are differences in cancer experiences and outcomes for individuals living with IDD, from risk through survivorship. These differences may be attributed to features of the IDD, such as cognitive deficits and communication, as well as social determinants of health-like lower education levels and ableism. However, there is no comprehensive overview of the literature quantifying these potential disparities and describing the influencing factors. In this paper, we describe a scoping review protocol to systematically review published literature on cancer for adults with IDD. The purpose of this review is to identify differences in cancer risk, stage at diagnosis, treatment and survival along the cancer continuum for adults with IDD and outline potential contributing factors creating these disparities. METHODS AND ANALYSIS: We will follow Arksey and O'Malley's expanded framework for scoping reviews to conduct this review. We will systematically search electronic databases for peer-reviewed, published journal articles to identify appropriate studies in collaboration with a health science librarian. Two reviewers will independently review titles and abstracts followed by a full-text review to determine whether it meets inclusion criteria. A data chart for collecting and sorting information will be developed in consultation with the team. Results will be collated and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews: PRISMA-Scoping Reviews. Extracted information will be summarised quantitatively and qualitatively to meet review objectives. ETHICS AND DISSEMINATION: This scoping review will employ a methodology to identify literature related to cancer outcomes and experiences for adults with IDD. Results will be disseminated to relevant stakeholders who care for and support individuals with IDD at local, provincial and national levels and through publishing findings. By highlighting the disparities in the cancer system and gaps in the research, this scoping review can provide direction for future action.