Alyson L. Mahar

Cancer is a major public health concern and is now the leading cause of death in many countries. Despite this, little is known about cancer in underserved groups, particularly adults with intellectual disability. The aim of this study was to explore cancer diagnosis and mortality from cancer in adults with intellectual disability and those who are ageing in the general population, and adults with a physical disability. We analysed five waves of longitudinal data from IDS‐TILDA and TILDA, two Irish longitudinal studies. Two TILDA cohorts (adults aged ≥ 65 years and adults with physical disability) were used as contextual reference points to aid the interpretation of findings. Cancer deaths for those with intellectual disability were identified from death certificates across the study period. Self‐reported cancer prevalence in IDS‐TILDA was 4%–8% across Waves 1–3. This was 15.5%–17.5% in the two TILDA cohorts. Among 241 deaths in IDS‐TILDA, 38 people with intellectual disability had cancer recorded on death certificates although 26 (68%) had never self‐reported cancer. Overall, adults with intellectual disability reported low cancer prevalence and incidence across five waves of longitudinal data. A gap exists in terms of the proportion of cancer deaths among people in this group who never reported having a cancer diagnosis at any point across the wave. While data limitations mean this cannot be interpreted as direct evidence of under‐diagnosis, the finding raises important questions about cancer recognition, reporting and diagnostic pathways for adults with intellectual disability. Overall, the findings suggest that there appears to be systemic gaps in cancer detection, and there is a need for improved policy and diagnostic pathways for this population.

Background and Objective: Gastrointestinal (GI) cancers pose a substantial burden on patients and care partners, yet outcomes research and clinical tools remain heavily weighted toward clinical endpoints over patient‐centred outcomes (PCOs). Without standardised PCOs, risk communication and shared decision‐making may revolve around endpoints misaligned with patient priorities. We aimed to identify PCOs meaningful to patients with GI cancer and their care partners. Design, Setting and Participants: We conducted a qualitative focus group study with adult patients with a GI cancer diagnosis and their care partners, recruited from a tertiary cancer centre and patient partner organisations in Canada. Focus groups used open‐ended questions and hypothetical patient personas to elicit PCOs. Two researchers independently extracted PCO concepts from verbatim transcripts and synthesised them using a deductive‐inductive clustering approach informed by thematic analysis and the patient‐centred care framework. Results: Overall, 15 patients and 13 care partners participated. We extracted 254 PCO concepts and consolidated them into 55 unique PCOs organised under 7 parent clusters: care experience (31% of mentions), psychosocial (25%), treatment (16%), lifestyle (12%), healthcare utilisation (8%), functional status (4%), and symptoms (3%). Six PCOs accounted for approximately half of all mentions: communication, care access, information access, treatment understanding, coping abilities, and finances. Patients most often raised psychosocial PCOs, whereas care partners more frequently mentioned functional status and symptom PCOs. Treatment‐related PCOs were a mutual concern. Discussion and Conclusions: Patients and care partners identified 55 PCOs spanning dimensions not consistently captured in existing GI cancer instruments. These PCOs can be integrated in the development of a core outcome set for patient‐centred risk assessment and individualised prediction in GI cancer care. Patient and Public Contribution: Three patient partners with lived experience of cancer contributed to the study as co‐investigators. They informed the focus group guide and its sequencing, advised on the language of recruitment materials, and refined data analysis and interpretation. Patients and care partners also took part as focus group participants.

Background: Little is known about non-curative lung cancer care, including palliative care, for adults with intellectual, or developmental disabilities. Clinical management may vary due to health status, ability to communicate, access to inclusive healthcare, and healthcare bias. Aim: We examined the receipt of cancer-directed consultations, treatments and palliative care among stage IV non-small-cell lung cancer (NSCLC) patients with and without intellectual or developmental disabilities. Design: This was a population-based retrospective cohort study using provincial routinely collected health data. Receipt of consultations with surgeons, medical oncologists, and radiation oncologists, receipt of systemic therapy, radiation, and surgery as well as receipt of palliative care in the year following diagnosis were compared between people with and without intellectual or developmental disabilities. Cause-specific Cox proportional hazards regression, accounting for death as a competing event, was used. Setting/participants: Adults diagnosed with stage IV NSCLC between 2010 and 2022 in Ontario, Canada. Results: The study included 33,184 individuals diagnosed with stage IV NSCLC (n intellectual or developmental disabilities = 106). Adults with intellectual or developmental disabilities were significantly less likely to receive any cancer-directed consultation (hazard ratio [HR] = 0.62; 95% confidence interval [CI] 0.49–0.78), any cancer-directed cancer treatment (HR = 0.52; 95% CI 0.39–0.70), and radiation or systemic therapy (HR = 0.49; 95% CI 0.36–0.66) than non-disabled adults. There was no statistical difference in receipt of palliative care (HR = 1.15; 95% CI 0.93–1.41). Conclusion: These findings contribute to an emerging evidence base documenting differences in cancer treatment and outcomes among adults with intellectual or developmental disabilities. Person-center research is needed that examines end-of-life lung cancer care treatment decision-making to identify and mitigate barriers to optimal management.

Background: Glioblastoma (GB) is the most common and most aggressive malignant primary brain tumor, with 5-year survival rates around 5%. While treatment-related factors significantly impact outcomes, the influence of sociodemographic variables remains unclear, with prior studies showing inconsistent findings. These inconsistencies may stem from underrepresentation of rural patients within national databases and from comparison across centers with variable treatment practices. The objective of the study was to evaluate whether population size, geographic distance, and regional-average income influence short- and long-term survival among GB patients when treatment delivery is uniform. Methods: We analyzed 248 patients who underwent surgical resection at a single publicly funded tertiary neurosurgical center serving all of Southeastern Ontario (2017-2023). Multivariable logistic regression assessed 90-day mortality, while Cox proportional hazards models with time-varying treatment covariates evaluated overall survival (OS). Results: Among 248 patients, 71.8% resided in communities with <50 000 residents. Residing in areas with ≥50 000 residents was associated with 63% lower odds of 90-day mortality (adjusted OR [aOR] 0.37 [95% CI, 0.17-0.81]). Each 10-mile increase in distance was associated with 5% increased odds of 90-day mortality (aOR 1.05 [95% CI, 1.01-1.10]). Regional-average income showed no association with 90-day mortality (aOR 0.96 [95% CI, 0.51-1.81]). None of these variables significantly affected OS in multivariable models. Conclusions: When treatment practices are uniform, population size and geographic distance independently influence early postoperative mortality but not long-term survival. These findings suggest that improving equity in GB care requires targeted interventions during the critical first 90 days postsurgery, extending beyond geographic access alone to address challenges inherent to low-population-density communities.

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 impact of socioeconomic factors on cancer outcomes is well documented; however, their role in access to and receipt of care within universal health systems for advanced lung cancer is less established. We investigated inequalities in specialized cancer consultation and treatment for stage IV non-small cell lung cancer (NSCLC). We used a population-based cohort with administrative health data to study people aged 18+ diagnosed with stage IV NSCLC between 2010 and 2022 in Ontario. We measured consultations with medical oncologists, radiation oncologists, and thoracic surgeons as well as systemic therapy, radiation, surgery, and palliative care in the year following diagnosis, comparing consultation and treatment rates across quintiles of census measures of community material resources. Multivariable cause-specific Cox proportional hazards regression, accounting for death, was used. We included 32,902 stage IV NSCLC patients. People living in the least materially resourced neighborhoods were less likely to have a cancer-directed consultation with a medical oncologist, radiation oncologist, or thoracic surgeon (hazard ratio [HR] = 0.91; 95% confidence interval [CI] 0.87-0.94) and less likely to receive any cancer-directed treatment (HR = 0.90; 95% CI 0.86-0.94) compared to those with the most material resources. We did not detect a difference in the rate of palliative care (HR = 1.04; 95% CI 1.00-1.08). Results were consistent in urban but not rural populations. We identified inequities in access to cancer-directed consultation and treatment among adults with stage IV NSCLC by material resources, limited to urban and suburban populations. Future research should explore root causes and identify interventions to address these inequities.

Canadian Armed Forces (CAF) Veterans and former Royal Canadian Mounted Police (RCMP) members (“Veterans/former RCMP members”) may be at increas

Prognostication tools offer a way to combine diverse information and inform personalized survival predictions for patients and their providers. A review of