Data Quality Assessment on Congenital Anomalies in Ontario, Canada

Background: Congenital anomalies (CAs) are a major cause of infant morbidity and mortality in Canada. Reliably identifying CAs is essential for CA surveillance and research. The main objective of this study was to assess the agreement of eight sentinel anomalies including: neural tube defects (NTD), orofacial clefts, limb deficiency defects (LDD), Down syndrome (DS), tetralogy of Fallot (TOF), gastroschisis (GS), hypoplastic left heart syndrome (HLHS) and transposition of great vessels (TGA) captured in the BORN Information System (BIS) database and the Canadian Institute for Health Information (CIHI) Discharge Abstract Database (DAD).Methods: Live birth and stillbirth records between the BIS and CIHI-DAD in the fiscal years of 2012–2013 to 2015–2016 were linked using 10 digit infant Ontario Health Insurance Plan (OHIP) numbers. Percent agreement and Kappa statistics were performed to assess the reliability (agreement) of CAs identified in the linked BIS and CIHI-DAD birth records. Then, further investigations were conducted on those CA cases identified in the CIHI-DAD only.Results: Kappa coefficients of the eight selected CAs between BIS (“Confirmed” or “Suspected” cases) and CIHI-DAD were 0.96 (95% CI: 0.93–0.98) for GS; 0.81 (95% CI: 0.78–0.83) for Orofacial clefts; 0.75 (95% CI: 0.72–0.77) for DS; 0.71 (95% CI: 0.65–0.77) for TOF; 0.62 (95% CI: 0.55–0.68) for TGA; 0.59 (95% CI: 0.49–0.68) for HLHS, 0.53 (95% CI: 0.46–0.60) for NTD-all; and 0.30 (95% CI: 0.23–0.37) for LDD.Conclusions: The degree of agreement varied among sentinel CAs identified between the BIS and CIHI. The potential reasons for discrepancies include incompleteness of capturing CAs using existing picklist values, especially for certain sub-types, incomplete neonatal special care data in the BIS, and differences between clinical diagnosis in the BIS and ICD-10-CA classification in the DAD. A future data abstraction study will be conducted to investigate the potential reasons for discrepancies of CA capture between two databases. This project helps quantify the quality of CA data collection in the BIS, enhances understanding of CA prevalence in Ontario and provides direction for future data quality improvement activities.

Decreased Colorectal Cancer Incidence and Incidence-Based Mortality in the Screening-Age Population of Ontario

Background and Aims We aimed to evaluate trends in Ontario, Canada, 2002 to 2016, in uptake of colorectal evaluative procedures, colorectal cancer (CRC) incidence and incidence-based mortality in the colorectal screening-age population. Methods We defined the screening age-eligible population as persons 51 to 74 years of age with ≥1 year eligibility for the Ontario Health Insurance Plan, excluding those with a diagnosis of CRC in the Ontario Cancer Registry (OCR) prior to age 50 or January 1, 2002. We computed annual up-to-date status with colorectal evaluative procedures from billing claims, and CRC incidence from the OCR. In order to compute incidence-based CRC mortality, we included persons with a first diagnosis of CRC between the ages of 51 and 74, diagnosed between January 1, 1992 and December 31, 2001, still alive and <75 years of age on January 1, 2002, based on cause of death from the OCR. Overall, age-stratified and sex-stratified trends were evaluated by Cochran–Armitage trend tests. Results Persons up to date with colorectal evaluative procedures increased from 628,214/2,782,061 (22.6%) in 2002 to 2,584,570/4,179,789 (62.2%) in 2016. CRC incidence fell from 129.3/100,000 in 2002 to 94.54/100,000 in 2016, and incidence-based CRC mortality fell from 40.8/100,000 to 24.1/100,000. Decreasing trends in overall and stratified incidence and mortality were all significant, except among persons 51 to 54 years old. Conclusions There was continued increase in persons up-to-date with colorectal evaluative procedures, and significant decrease in CRC incidence and incidence-based CRC mortality from 2002 through 2016.

Cost analysis of post-nephrectomy follow-up schedules from three North American clinical practice guidelines for localized renal cell carcinoma (RCC).

657 Background: Several guidelines have been developed for follow up of patients after nephrectomy for RCC. The direct financial cost of following recommendations in three North American guidelines were estimated in this analysis. Methods: Recommendations from the American Urological Association (AUA), Canadian Urological Association (CUA), and National Comprehensive Cancer Network (NCCN) for post-radical nephrectomy care were compiled. Data regarding costs of testing and physician visits were obtained from the Ontario Health Insurance Plan Schedule of Benefits. Both the cost per patient completing five years of surveillance (scenario A), and the estimated cost adjusted for attrition from predicted recurrences (scenario B) were calculated. A sensitivity analysis was performed and will be presented. Results: For five years of follow up of a single patient in both scenarios, the costs are summarized in the table. For scenario A, follow up costs ranged from $515-1112 for T1N0, $1639-2746 for T2N0, $1856-2746 for T3/4 and $1918-2746 TxN+. For scenario B, costs were $497-1051 for T1N0, $1259-2198 for T2N0, $1008-1595 for T3/4N0 and $1043-1595 for TxN+. Conclusions: The AUA, CUA, and NCCN guidelines showed considerable differences in their associated costs, particularly when expected recurrences were accounted for. The NCCN recommendations are predicted to be the costliest to implement, irrespective of stage.[Table: see text]

Access to cancer care in northwestern Ontario—a population-based study using administrative data

Background: Despite universal access to health care in Canada, disparities exist relating to social determinants of health, which contribute to discrepancies in cancer incidence and outcomes between rural and urban areas. Given that Canada has one of the highest-quality national population-based cancer registry systems in the world and there is little information regarding cancer statistics specific to northwestern Ontario, the purpose of this study was to estimate the percentage of cancer patients without documentation of a specialist consultation (medical or radiation oncology consultation) and to determine factors that affect access to specialist consultation in northwestern Ontario. Methods: This was a population-based retrospective study using administrative data. Administration data was obtained through the Ontario Cancer Data Linkage Project. For each index case, a timeline was constructed of all Ontario Health Insurance Plan billing codes and associated service dates starting with primary cancer diagnosis and ending with death. Specific factors affecting access to specialist consultation were assessed. Results: Within the 6 year study period (2010-2016), 2583 index cases were identified. Most (n=2007, 78%) received a specialist consultation. Factors associated with not receiving a specialist consultation included older age (p<0.0001, OR 0.29; 95% CI 0.19-0.44) and rural residence (p<0.0001, OR 0.48; 95% CI 0.48-0.72). Factors associated with receiving a specialist consultation included increased duration of disease (p< 0.0001, OR 1.32; 95% CI 1.19-1.46), a diagnosis of breast cancer (p < 0.0001, OR 2.51; 95% CI 1.43-4.42), and a diagnosis of lung cancer (p< 0.0001, OR 1.77; 95% CI 1.38-2.26). Conclusions: These findings are consistent with the other studies assessing access to care barriers, but is the first to look at care access in northwestern Ontario. Further research is needed to examine gaps in care relating to access to primary referral services, symptom recognition, cancer screening, and travel associated burdens specific to northwestern Ontario.

Epidemiology and health outcomes of sarcoidosis in a universal healthcare population: a cohort study

Sarcoidosis-related mortality appears to be rising in North America, with increasing rates in females and the elderly. We aimed to estimate trends in sarcoidosis incidence, prevalence and mortality in Ontario, Canada.We performed a cohort study using health administrative data from Ontario between 1996 and 2015. International Classification of Diseases and Ontario Health Insurance Plan codes were used for case detection. Three disease definitions were created: 1) sarcoidosis, two or more physician claims within 2 years; 2) chronic sarcoidosis, five or more physician claims within 3 years; and 3) sarcoidosis with histology, two or more physician claims with a tissue biopsy performed between claims.Overall, 18 550, 9199 and 3819 individuals with sarcoidosis, chronic sarcoidosis and sarcoidosis with histology, respectively, were identified. The prevalence of sarcoidosis was 143 per 100 000 in 2015, increasing by 116% (p<0.0001) from 1996. The increase in age-adjusted prevalence was higher in males than females (136% versus 99%; p<0.0001). The incidence of sarcoidosis declined from 7.9 to 6.8 per 100 000 between 1996 and 2014 (15% decrease; p=0.0009). A 30.3% decrease in incidence was seen among females (p<0.0001) compared with a 5.5% increase in males (p=0.47). Age- and sex-adjusted mortality rates of patients with sarcoidosis rose from 1.15% to 1.47% between 1996 and 2015 (28% increase; p=0.02), with the overall trend being nonsignificant (p=0.39). Mortality rates in patients with chronic sarcoidosis increased significantly over the study period (p=0.0008).The prevalence of sarcoidosis is rising in Ontario, with an apparent shifting trend in disease burden from females to males. Mortality is increasing in patients with chronic sarcoidosis.

Validation of endovascular and open thoracoabdominal aortic aneurysm repair in Ontario health administrative databases

Purpose: The positive predictive value (PPV) of endovascular and open thoracoabdominal aortic aneurysm (TAAA) repair coding was assessed in Ontario health administrative databases. Methods: Between 1 January 2006 and 31 March 2016, a random sample of 192 patients was identified using Canadian Classification of Health Intervention (CCI) procedure codes and Ontario Health Insurance Plan (OHIP) billing codes from administrative data. Blinded chart reviews were conducted at two cardiovascular centers to assess the level of agreement between the administrative records and the corresponding patients’ hospital charts. The PPV was calculated with 95% confidence intervals using hospital charts as the gold standard. Results: The PPV for the single endovascular TAAA repair code, 1ID80GQNRN, was 0.90 (0.78, 0.97). A combination of all nine CCI open TAAA repair codes was performed, with a PPV of 0.62 (0.47, 0.76). The combination of any one of the nine CCI codes AND the single OHIP code for open TAAA repair (R803) rendered a PPV of 0.98 (0.90, 1.00). Conclusions: Endovascular TAAA repair may be identified using a single CCI code (1ID80GQNRN). Open TAAA repair may be identified using a combination of CCI and OHIP codes. Researchers may therefore use administrative data to conduct population-based studies of endovascular and open repair of TAAA.

Survival outcome differences based on treatments used and knowledge of the primary tumour site for patients with cancer of unknown and known primary in Ontario

IntroductionPatients with cancer of unknown primary (cup) have pathologically confirmed metastatic tumours with unidentifiable primary tumours. Currently, very little is known about the relationship between the treatment of patients with cup and their survival outcomes. Thus, we compared oncologic treatment and survival outcomes for patients in Ontario with cup against those for a cohort of patients with metastatic cancer of known primary site.Methods Using the Ontario Cancer Registry and the Same-Day Surgery and Discharge Abstract databases maintained by the Canadian Institute for Health Information, we identified all Ontario patients diagnosed with metastatic cancer between 1 January 2000 and 31 December 2005. Ontario Health Insurance Plan treatment records were linked to identify codes for surgery, chemotherapy, or therapeutic radiation related to oncology. Multivariable Cox regression models were constructed, adjusting for histology, age, sex, and comorbidities.Results In 45,347 patients (96.3%), the primary tumour site was identifiable, and in 1743 patients (3.7%), cup was diagnosed. Among the main tumour sites, cup ranked as the 6th largest. The mean Charlson score was significantly higher (p < 0.0001) in patients with cup (1.88) than in those with a known primary (1.42). Overall median survival was 1.9 months for patients with cup compared with 11.9 months for all patients with a known-primary cancer. Receipt of treatment was more likely for patients with a known primary site (n = 35,012, 77.2%) than for those with cup (n = 891, 51.1%). Among patients with a known primary site, median survival was significantly higher for treated than for untreated patients (19.0 months vs. 2.2 months, p < 0.0001). Among patients with cup, median survival was also higher for treated than for untreated patients (3.6 months vs. 1.1 months, p < 0.0001).Conclusions In Ontario, patients with cup experience significantly lower survival than do patients with metastatic cancer of a known primary site. Treatment is associated with significantly increased survival both for patients with cup and for those with metastatic cancer of a known primary site.

Validation of abdominal aortic aneurysm repair codes in Ontario administrative data

Purpose: To determine the positive predictive values (PPV) of Ontario administrative data codes for the identification of open (OSR) and endovascular (EVAR) repairs of elective (eAAA) and ruptured (rAAA) abdominal aortic aneurysms. Methods: We randomly identified 319 eAAA and rAAA repairs at two Toronto hospitals between April 2003 and March 2015, using administrative health data in Ontario, Canada. International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) codes I71.3 and I71.4, were used to identify rAAA and eAAA patients, respectively. A blinded retrospective chart review was conducted and served as the gold standard comparator. Re-abstracted records were compared to Canadian Classification of Health Interventions (CCI) and Ontario Health Insurance Plan (OHIP) codes in the Canadian Institute for Health Information Discharge Abstract Database (CIHI-DAD) and OHIP databases. We calculated the PPV and 95% confidence intervals (95% CI) of individual and combined procedure and billing codes for elective and ruptured OSR and EVAR (eOSR, eEVAR, rOSR, and rEVAR). Results: Permutation of codes allowed identification of eOSR with 95% PPV (95% CI 88, 98), eEVAR with 96% PPV (95% CI 90, 99), rOSR with 87% PPV (95% CI 79, 93) and rEVAR with 91% PPV (95% CI 59, 100). Conclusions: Diagnostic, procedure and billing code combinations allow identification of eOSR, eEVAR, rOSR and rEVAR patients in Ontario administrative data with a high degree of certainty.

Trends in Socioeconomic Inequalities in Hypertension in Ontario, Canada, 2000-2012

IntroductionHypertension is leading risk factor for cardiovascular disease and mortality. Low socioeconomic position (e.g., income or high material deprivation) is an important risk factor for hypertension. However, there is limited evidence monitoring the extent to which socioeconomic inequalities in hypertension exist and are changing over time in Ontario. Objectives and ApproachThe study objective was to estimate socioeconomic trends in prevalent hypertension by household income and material deprivation in Ontario from 2000 to 2012. A pooled cross-sectional study was conducted using data from 6 Canadian Community Health Surveys linked to the Discharge Abstract Database and Ontario Health Insurance Plan data (n=121,390 over 35 years, 54\% female). Relative-weighted Poisson regression models were used to estimate hypertension rates (adjusted for age, sex, ethnicity and immigration) across quintiles of equivalized household income and area-level material deprivation. Socioeconomic inequalities were estimated using the slope index of inequality (SII) and relative index of inequality (RII). ResultsSocioeconomic inequalities in hypertension were observed across income quintiles on both absolute (SII: 1428 per 10,000, 95\%CI:1126,1730) and relative (RII:1.74, 95\%CI:1.53,1.94) scales in 2000, decreasing by 2012 (SII:297 per 10,000, 95%CI: -82,676; RII:1.19, 95%CI:0.93,1.45). A similar pattern was observed across material deprivation quintiles, however with smaller inequalities in 2000 (SII:595 per 10,000, 95%CI:306,884; RII:1.25, 95%CI:1.11,1.39) and 2012 (SII:389 per 10,000, 95%CI:17,761; RII:1.24, 95%CI:0.99,1.49). Conclusion/ImplicationsSocioeconomic inequalities in hypertension were observed in Ontario, with decreasing trends between 2000 and 2012. Area-level material deprivation underestimated individual-level socioeconomic inequalities in hypertension.