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.

Population-Based Cancer Survival in Canada and the United States by Socioeconomic Status: Findings from the CONCORD-2 Study.

Background: Population-based cancer survival provides insight into the effectiveness of health systems to care for all residents with cancer, including those in marginalized groups. Methods: Using CONCORD-2 data, we estimated 5-year net survival among patients diagnosed 2004-2009 with one of 10 common cancers, and children diagnosed with acute lymphoblastic leukemia (ALL), by socioeconomic status (SES) quintile, age (0-14, 15-64, ≥65 years), and country (Canada or United States). Results: In the lowest SES quintile, survival was higher among younger Canadian adults diagnosed with liver (23% vs 15%) and cervical (78% vs 68%) cancers and with leukemia (62% vs 56%), including children diagnosed with ALL (92% vs 86%); and higher among older Americans diagnosed with colon (62% vs 56%), female breast (87% vs 80%), and prostate (97% vs 85%) cancers. In the highest SES quintile, survival was higher among younger Americans diagnosed with stomach cancer (33% vs 27%) and younger Canadians diagnosed with liver cancer (31% vs 23%); and higher among older Americans diagnosed with stomach (27% vs 22%) and prostate (99% vs 92%) cancers. Conclusions: Among younger Canadian cancer patients in the lowest SES group, greater access to health care may have resulted in higher cancer survival, while higher screening prevalence and access to health insurance (Medicare) among older Americans during the period of this study may have resulted in higher survival for some screen-detected cancers. Higher survival in the highest SES group for stomach and liver may relate to treatment differences. Survival differences by age and SES between Canada and the United States may help inform cancer control strategies.

Patient and family financial burden associated with cancer treatment in Canada: a national study.

GOAL: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. METHODS: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and "other" costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. RESULTS: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). "Worst burden" respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. CONCLUSIONS: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Examining the Effects of Time to Diagnosis, Income, Symptoms, and Incidental Detection on Overall Survival in Epithelial Ovarian Cancer: Manitoba Ovarian Cancer Outcomes (MOCO) Study Group.

OBJECTIVE: The primary objectives of this study were to analyze data on time to diagnosis and correlate this with overall survival. We secondarily analyzed the effects of emergency room visits, symptoms, incidental findings, residence, socioeconomic status, and residual disease on overall survival. METHODS: This retrospective population-based descriptive cohort study examined all invasive ovarian cancer cases in Manitoba, Canada, between 2004 and 2010. Clinicopathologic, socioeconomic, and outcome data were collected. Analysis was performed with Cox and logistic regression stratified by early and late stage. RESULTS: Six hundred eighty-seven ovarian cancer patients were identified, with a final cohort of 601 patients: 210 with early-stage (1/2) and 391 with late-stage (3/4) disease. No presenting symptoms were associated with survival outcome. Poorer survival was associated with increasing age (P = 0.0016) and neoadjuvant chemotherapy (P = 0.0037). Higher income within the urban setting was also associated with a survival advantage (P = 0.0037), whereas initial presentation to the emergency room (P = 0.0399) was associated with decreased survival. Finally, for advanced-stage disease, incidental diagnosis had a significantly improved overall survival (hazard ratio, 0.424; 95% confidence interval, 0.27-0.67; P = 0.0003), even when accounting for confounding factors. Time from first presentation to diagnosis was associated with survival (P = 0.0309). CONCLUSIONS: This study found that time to diagnosis did not negatively impact overall survival, although there was an association. Age, morphology, treatment type, residual disease, medical comorbidities, and income were significant prognostic factors. This is the first study to show a survival advantage to incidentally finding an ovarian cancer. Further research is needed on the outcomes of pelvic examination.

Using personal health insurance numbers to link the Canadian Cancer Registry and the Discharge Abstract Database.

BACKGROUND: Linking cancer registry and administrative data can reveal health care use patterns among cancer patients. The Canadian Cancer Registry (CCR) contains personal health insurance numbers (HINs) that facilitate linkage to hospitalization information in the Discharge Abstract Database (DAD). DATA AND METHODS: Valid HINs, captured in the CCR or obtained through probabilistic linkages to provincial health insurance registries, were used to deterministically link prostate, female breast, colorectal and lung cancers diagnosed from 2005 through 2008 with the DAD for fiscal years 2004/2005 to 2010/2011. RESULTS: At least 98% of tumours diagnosed from 2005 through 2008 had valid HINs in the CCR or obtained through probabilistic linkages. For provinces submitting day surgeries to the DAD, linkage rates to at least one DAD record were higher for female breast (95.6% to 98.1%), colorectal (96.9% to 98.7%) and lung cancers (92.8% to 96.3%) than for prostate cancers (77.2% to 91.6%). Among linked records, agreement was high for sex (99% or more) and complete date of birth (97% or more); the likelihood of a consistent diagnosis in the CCR and on at least one linked DAD record was higher for female breast (86.8% to 97.2%), colorectal (94.6% to 97.7%) and lung cancers (90.3% to 95.5%) than for prostate cancers (77.4% to 87.8%). INTERPRETATION: Deterministically linking the CCR and DAD using personal HINs is a feasible and valid approach to obtaining hospitalization information about cancer patients.

Colorectal cancer screening in first nations people living in Manitoba.

BACKGROUND: Because the burden of colorectal cancer (CRC) seems to be increasing in First Nations, it is important to better understand CRC screening utilization. The objective of this study was to describe CRC screening among First Nations living in Manitoba. METHODS: The Federal Indian Register was linked to two provincial databases. A negative binomial model was used to compare the probability of First Nations having a fecal occult blood test (FOBT), colonoscopy, or flexible sigmoidoscopy (FS) with all other Manitobans. RESULTS: First Nations who lived in Winnipeg were significantly less likely to have had a FOBT in the previous 2 years than all other Manitobans who lived in Winnipeg [rate ratio (RR) = 0.40; 95% confidence intervals (CI), 0.37-0.44]. There was no difference in the likelihood of having a colonoscopy or FS for First Nations individuals who resided in northern Manitoba compared with all other Manitobans (RR, 1.04; 95% CI, 0.91-1.19). However, First Nations who lived in the rural south or urban areas were less likely than all other Manitobans to have had a colonoscopy or FS (RR, 0.81, 95% CI, 0.75-0.87, rural south; RR, 0.86, 95% CI, 0.81-0.92, urban). CONCLUSIONS: First Nations living in Winnipeg were significantly less likely to be screened for CRC using the FOBT. Colonoscopy and FS use depended on area of residence. IMPACT: First Nations experience barriers that impede the use of CRC screening. Further research is needed to understand these barriers to extend the benefit of CRC screening to this population. Cancer Epidemiol Biomarkers Prev; 24(1); 241-8. ©2014 AACR.

The economic benefits of risk factor reduction in Canada: tobacco smoking, excess weight and physical inactivity.

OBJECTIVE: Tobacco smoking, excess weight and physical inactivity contribute substantially to the preventable disease burden in Canada. The purpose of this paper is to apply a recently developed approach in addressing the issue of double counting in estimating the combined current economic burden of these risk factors (RFs) and to estimate the economic benefits of long-term RF reduction in Canada. METHODS: We used an approach based on population attributable fractions (PAF) to estimate the economic burden associated with the various RFs. Sex-specific relative risk and age-/sex-specific prevalence data were used in the modelling when available. Excess weight was modelled as a trichotomous exposure (normal weight, overweight, obese) while tobacco smoking was modelled as a tetrachotomous exposure (non-smoker, light, medium or heavy smoker). All costs are given in constant 2012 Canadian dollars. RESULTS: The annual economic burden of the RFs of tobacco smoking, excess weight and physical inactivity in Canada are estimated at $50.3 billion in 2012. Sensitivity analysis suggests a range for the economic burden of $41.6 to $58.7 billion. Of the $50.3 billion, $21.3 ($20.0 to $22.6) billion is attributable to tobacco smoking, $19.0 ($13.8 to $24.0) billion to excess weight and $10.0 ($7.8 to $12.0) billion to physical inactivity. A 1% relative annual reduction in each of the three RFs would result in an $8.5 billion annual reduction in economic burden by 2031. CONCLUSION: A modest annual 1% relative reduction in the RFs of tobacco smoking, excess weight and physical inactivity can have a substantial health and economic impact over time at the population level.

Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS).

PURPOSE: The Survivor Unmet Needs Survey (SUNS) is one of the only unmet needs measures that was developed and evaluated utilising a population-based sample of cancer survivors. At 89 items, the current scale is quite burdensome. The current study aimed to develop a valid and reliable short version of this survey. METHODS: A heterogeneous sample of 1,589 cancer survivors, aged 19 years or over at diagnosis, diagnosed with a histologically confirmed cancer in the previous 12 to 60 months, completed the SUNS. Using these data, we employed a combined theoretical and statistical method of reducing the number of items in the SUNS. The shortened survey was examined for construct validity, internal consistency, discriminant validity and floor and ceiling effects. RESULTS: Fifty-nine items were removed. Construct validity closely reflected the original structure of the SUNS. However, all items from the Emotional health and Relationships domains loaded onto one factor. Cronbach's alpha for the final four domains were 0.85 or above, demonstrating strong internal consistency. Intra-class correlations of the three domains from the original survey (Financial concerns, Information and Access and continuity of care) and shortened survey were high (>0.9). Discriminant validity illustrated the short-form SUNS' ability to discriminate between those who had recently received treatment and those who had not. CONCLUSIONS: This study describes the development and psychometric evaluation of the short-form SUNS (SF-SUNS). Future studies should confirm the test-retest reliability and predictive validity of the SF-SUNS utilising large, independent, population-based samples of cancer survivors.

Stage at diagnosis and colorectal cancer survival in six high-income countries: a population-based study of patients diagnosed during 2000-2007.

BACKGROUND: Large international differences in colorectal cancer survival exist, even between countries with similar healthcare. We investigate the extent to which stage at diagnosis explains these differences. METHODS: Data from population-based cancer registries in Australia, Canada, Denmark, Norway, Sweden and the UK were analysed for 313 852 patients diagnosed with colon or rectal cancer during 2000-2007. We compared the distributions of stage at diagnosis. We estimated both stage-specific net survival and the excess hazard of death up to three years after diagnosis, using flexible parametric models on the log-cumulative excess hazard scale. RESULTS: International differences in colon and rectal cancer stage distributions were wide: Denmark showed a distribution skewed towards later-stage disease, while Australia, Norway and the UK showed high proportions of 'regional' disease. One-year colon cancer survival was 67% in the UK and ranged between 71% (Denmark) and 80% (Australia and Sweden) elsewhere. For rectal cancer, one-year survival was also low in the UK (75%), compared to 79% in Denmark and 82-84% elsewhere. International survival differences were also evident for each stage of disease, with the UK showing consistently lowest survival at one and three years. CONCLUSION: Differences in stage at diagnosis partly explain international differences in colorectal cancer survival, with a more adverse stage distribution contributing to comparatively low survival in Denmark. Differences in stage distribution could arise because of differences in diagnostic delay and awareness of symptoms, or in the thoroughness of staging procedures. Nevertheless, survival differences also exist for each stage of disease, suggesting unequal access to optimal treatment, particularly in the UK.

Breast cancer trends in Manitoba: 40 years of follow-up.

This study reports a comprehensive array of breast cancer statistics for Manitoba for a 40-year period. Data from the Manitoba Cancer Registry were combined with the provincial population-based registration file to determine trends in breast cancer incidence, prevalence and mortality rates, as well as survival and the probability of being diagnosed with breast cancer in the next 10 years. The age-standardized incidence rate of breast cancer increased by 0.99/100,000 women per year over the 40 years of follow-up (69.6/100,000 women in 1960, 109.9/100,000 women in 1999). Mortality rates peaked in 1986 (35.7/100,000 women), while the 1999 mortality rate (26.0/100,000 women) was almost comparable to the 1960 rate (22.4/100,000 women). No significant trend in mortality rate was observed over the 40-year period. The 5-year prevalence rate of breast cancer increased by 8.6/100,000 women per year. Between 1960-64 and 1995-99, 5-year survival increased from 0.62 to 0.86. The probability of being diagnosed with breast cancer in the next 10 years increased the most for women 60 years of age. The breast cancer burden in Manitoba is rapidly evolving mainly because of the increasing incidence and the better survival of cases. Key words: breast neoplasms, incidence, prevalence, registries, vital statistics.