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.

Access to symptom screening and severe symptom risk among cancer patients with major mental illness.

INTRODUCTION: Cancer symptom screening has the potential to improve cancer outcomes, including reducing symptom burden among patients with major mental illness (MMI). We determined rates of symptom screening with the Edmonton Symptom Assessment System (ESAS-r) and risk of severe symptoms in cancer patients with MMI. METHODS: This retrospective cohort study used linked administrative health databases of adults diagnosed with cancer between 2007 and 2020. An MMI was measured in the 5 years prior to cancer diagnosis and categorized as inpatient, outpatient, or no MMI. Outcomes were defined as time to first ESAS-r screening and time to first moderate-to-severe symptom score. Cause-specific and Fine and Gray competing events models were used for both outcomes, controlling for age, sex, rural residence, year of diagnosis and cancer site. RESULTS: Of 389,870 cancer patients, 4049 (1.0%) had an inpatient MMI and 9775 (2.5%) had an outpatient MMI. Individuals with inpatient MMI were least likely to complete an ESAS-r (67.5%) compared to those with outpatient MMI (72.3%) and without MMI (74.8%). Compared to those without MMI, individuals with an inpatient or outpatient MMI had a lower incidence of symptom screening records after accounting for the competing risk of death (subdistribution Hazard Ratio 0.77 (95% CI 0.74-0.80) and 0.88 (95% CI 0.86-0.90) respectively). Individuals with inpatient and outpatient MMI status consistently had a significantly higher risk of reporting high symptom scores across all symptoms. CONCLUSIONS: Understanding the disparity in ESAS-r screening and management for cancer patients with MMI is a vital step toward providing equitable cancer care.

Patients' cancer care perceptions conceptualized through the Cancer Experience Measurement Framework.

BACKGROUND: Research on patients' perceptions of cancer care often documents sub-optimal experiences. Cancer care quality issues include restricted service access, lack of care coordination, gaps in follow-up and "generic" rather than person-centered care. Recent reports underscore that proactively and periodically seeking user feedback is crucial for timely care quality improvement. The present study aimed to analyze and thematically organize a large amount of feedback from patients who had been treated for cancer within the last 6 months. METHODS: Randomly selected participants (N = 3,278) from 3 University-affiliated cancer centres in Montreal, Quebec, Canada completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and an open-ended question on their perceptions of the care they received. 692 participants responded to the latter. Guided by the Cancer Experience Measurement Framework (CEMF), their feedback was analyzed using a qualitative thematic approach. RESULTS: Cancer care perceptions included sub-themes of care access and coordination, continuity/transition, and perceived appropriateness/personalisation of care. The most salient theme was captured by care access and coordination with 284 comments (44%) directly addressing these issues. The ways in which health care services were structured including setting, schedule, and location were often raised as cause for concerns. Issues surrounding cancer information/education, emotional support, and physical comfort were frequently reported as unmet needs. In addition, limited access to cancer services led patients to seek alternatives such as going to emergency departments and/or private care. CONCLUSIONS: These findings are timely as they show that most patients are well aware of quality issues in cancer care and are willing to report candidly on these. Patient feedback also underscore the importance for cancer care institutions to periodically gather patient-reported data so that systems can re-calibrate their service offerings according to these data. Ultimately, patient reports will translate into enhanced quality, personalization, and safer cancer care provision.