How a Canadian federal organization integrated synoptic reporting and quality improvement tools to drive a national learning health system in cancer surgery.

Accurate and complete surgical and pathology reports are the cornerstone of treatment decisions and cancer care excellence. Synoptic reporting is a process for reporting specific data elements in a specific format in surgical and pathology reports. Since 2007, The Canadian Partnership Against Cancer has led the implementation of synoptic reporting mechanisms across multiple cancer disease sites and jurisdictions across Canada. While the implementation of synoptic reporting has been successful, its use to drive improvements in the quality of cancer care delivery has been lacking. Here we describe the Partnership's 4-year, national multi-jurisdictional quality improvement initiative to catalyse the use synoptic data to drive cancer system improvements. Resources provided to the jurisdictions included operational funding, training in quality improvement methodology, national forums, expert coaches, and ad hoc monitoring and support. The program emphasized foundational concepts including data literacy, audit and feedback reports, communities of practice, and positive deviance methodology.

Cost-effectiveness of Active Identification and Subsequent Colonoscopy Surveillance of Lynch Syndrome Cases.

BACKGROUND & AIMS: The province of Ontario, Canada is considering immunohistochemical followed by cascade analyses of all patients who received a diagnosis of colorectal cancer (CRC) at an age younger than 70 years to identify individuals with Lynch syndrome. We evaluated the costs and benefits of testing for Lynch syndrome and determined the optimal surveillance interval for first-degree relatives (FDRs) found to have Lynch syndrome. METHODS: We developed a patient flow diagram to determine costs and yield of immunohistochemical testing for Lynch syndrome in CRC cases and, for those found to have Lynch syndrome, their FDRs, accounting for realistic uptake. Subsequently, we used the MISCAN-colon model to compare costs and benefits of annual, biennial, and triennial surveillance in FDRs identified with Lynch syndrome vs colonoscopy screening every 10 years (usual care for individuals without a diagnosis of Lynch syndrome). RESULTS: Testing 1000 CRC cases was estimated to identify 20 CRC index cases and 29 FDRs with Lynch syndrome at a cost of $310,274. Despite the high cost of Lynch syndrome tests, offering the FDRs with Lynch syndrome biennial colonoscopy surveillance was cost-effective at $8785 per life-year gained compared with usual care because of a substantial increase in life-years gained (+122%) and cost savings in CRC care. Triennial surveillance was more costly and less effective, and annual surveillance showed limited additional benefit compared with biennial surveillance. CONCLUSIONS: Immunohistochemical testing for Lynch syndrome in persons younger than 70 years who received a diagnosis of CRC and then testing FDRs of those found to have Lynch syndrome provide a good balance between costs and long-term benefits. Colonoscopy surveillance every 2 years is the optimal surveillance interval for patients with Lynch syndrome.

Guidance for management of cancer surgery during the COVID-19 pandemic.

Summary: During the coronavirus disease 2019 (COVID-19) pandemic, delaying lifesaving cancer surgeries must be done with extreme caution and thoughtfulness. Modelling indicates that delays in high-risk cancer surgeries beyond 6 weeks could affect long-term outcomes for thousands of Canadians. Consequently, it is possible that postponing cancer surgery without consideration of its implications could cost more lives than can be saved by diverting all surgical resources to COVID-19. This article provides general guidance on supporting curative surgical treatment where appropriate and with available resources.

Learning by Example: An International Perspective on Reflex-Testing for Lynch Syndrome.

BACKGROUND: Lynch syndrome (LS), an autosomal dominant cancer syndrome, is the most common cause of hereditary colon cancer. Currently, however, less than 5% of patients with LS have been identified. Reflex-testing programs (in which tumors of patients with colorectal cancer are routinely evaluated for LS) have been proposed for better identification of affected individuals, yet the uptake of these programs within health care systems is limited. This study explored the structure, implementation challenges, and future directions of existing international population-based reflex LS testing programs. METHODS: The study identified existing reflex-testing LS programs through the current literature and through a qualitative sampling approach. Key informants from each program were interviewed. Qualitative data were analyzed using a grounded theory analytic technique approach. RESULTS: The interviews were completed by 26 informants across seven identified programs. Three key themes were identified: (1) tension between a program imposed on stakeholders (a top-down approach) versus initiation of the program at the stakeholder level (bottom-up approach), (2) identification of pathologists as drivers of program success, and (3) strategies to optimize possible LS patients liaising with genetic counselors. Barriers to successful implementation included lack of stakeholder engagement and concerns regarding cost. Facilitators included strong administration to coordinate patient tracking and flexibility during the implementation process. CONCLUSIONS: Existing reflex-testing LS programs have varying structures, standards, and protocols. Program design can have a direct effect on the uptake of genetic testing. These are important considerations in the large-scale planning of LS reflex-testing programs within health systems.

A review of factors affecting patient fertility preservation discussions & decision-making from the perspectives of patients and providers.

Women undergoing cancer treatments and their healthcare providers encounter challenges in fertility preservation (FP) discussions and decision-making. A systematic review of qualitative research was conducted to gain in-depth understanding of factors influencing FP discussions and decision-making. Major bibliographic databases and grey literature in English from 1994 to 2016 were searched for qualitative research exploring patient/provider perspectives on barriers and facilitators to FP decision-making. Two researchers screened article titles, abstracts and full-texts. Verbatim data on research questions, study methodology, participants, findings and discussions of findings were extracted. Quality assessment and thematic analysis were conducted. The search yielded 74 studies dating from 2007 onwards; 29 met the inclusion criteria. Analysis revealed three types of barriers: (a) FP knowledge, skills and information deficits contributed to discomfort for providers and discontent for patients; (b) psychosocial factors and clinical issues influenced providers' practices around FP discussions and patients' decision-making; and (c) material, social and structural factors (e.g., lack of resources and accessibility) posed challenges to FP discussions. Potential facilitators to FP discussions and decision-making were also identified. A discussion of ways to improve physician's knowledge and facilitate women's decision-making and access to FP is presented, along with areas for policy development and further research.

An evaluation of oncofertility decision support resources among breast cancer patients and health care providers.

BACKGROUND: Cancer patients of reproductive age are at risk of infertility as a result of their treatment. Oncofertility decision support resources can assist patients with fertility decision-making before treatment yet available oncofertility resources contain varying levels of detail and different fertility options. The key information/sections needed in oncofertility resources remain unclear. To explore the information needs for oncofertility decision-making before cancer treatment, we aimed to evaluate existing oncofertility decision support resources with breast cancer patients and providers. METHODS: We conducted 30 to 90-min interviews that included a survey questionnaire and open-ended questions with patients and providers between March and June 2016. Interviews were transcribed verbatim. Analysis involved descriptive statistics for survey responses and thematic analysis of qualitative data. RESULTS: A total of 16 participants completed interviews. Key information perceived by most participants as necessary for fertility decision-making included tailored post-treatment pregnancy rates, cost ranges and financial assistance for the fertility options based on patients' situation. However, patient and provider participants expressed differing opinions on the inclusion of all before and after treatment fertility options and the amount of fertility information required at diagnosis. CONCLUSION: The evaluation identified fertility information needs among patients in addition to providers' views on patient needs. While existing oncofertility resources contain information perceived as necessary for decision-making there is an opportunity to use these findings to create or enhance resources to better meet the needs of patients. Additionally, patients and providers differing views on information needs highlight the opportunity for provider training to ensure better communication using resources in clinic to understand specific patient needs.

Pan-Canadian standards for cancer surgery

About the Canadian Partnership Against Cancer: The Canadian Partnership Against Cancer (CPAC) is an independent organization funded by the federal government to accelerate action on cancer control for all Canadians. As the steward of the Canadian Strategy for Cancer Control (the Strategy), the Partnership works with Canada's cancer community to take action to ensure fewer people get cancer, more people survive cancer and those living with the disease have a better quality of life. This work is guided by the Strategy, which was refreshed for 2019 to 2029, and will help drive measurable change for all Canadians affected by cancer. The Strategy includes 5 priorities that will tackle the most pressing challenges in cancer control as well as distinct First Nations, Inuit and Métis Peoples­specific priorities and actions reflecting Canada's commitment to reconciliation. A specific action in the Strategy calls for reducing the differences in practice and service delivery by setting standards for high-quality care and promoting their adoption. The CPAC will oversee the implementation of the priorities in collaboration with organizations and individuals on the front lines of cancer care: the provinces and territories; health care professionals; people living with cancer and those who care for them; First Nations, Inuit and Métis communities; governments and organizations; and its funder, Health Canada. Learn more about the Partnership and the refreshed Strategy at www.cancerstrategy.ca.

Validity of Administrative Data in Identifying Cancer-related Events in Adolescents and Young Adults: A Population-based Study Using the IMPACT Cohort.

BACKGROUND: Despite the importance of estimating population level cancer outcomes, most registries do not collect critical events such as relapse. Attempts to use health administrative data to identify these events have focused on older adults and have been mostly unsuccessful. We developed and tested administrative data-based algorithms in a population-based cohort of adolescents and young adults with cancer. METHODS: We identified all Ontario adolescents and young adults 15-21 years old diagnosed with leukemia, lymphoma, sarcoma, or testicular cancer between 1992-2012. Chart abstraction determined the end of initial treatment (EOIT) date and subsequent cancer-related events (progression, relapse, second cancer). Linkage to population-based administrative databases identified fee and procedure codes indicating cancer treatment or palliative care. Algorithms determining EOIT based on a time interval free of treatment-associated codes, and new cancer-related events based on billing codes, were compared with chart-abstracted data. RESULTS: The cohort comprised 1404 patients. Time periods free of treatment-associated codes did not validly identify EOIT dates; using subsequent codes to identify new cancer events was thus associated with low sensitivity (56.2%). However, using administrative data codes that occurred after the EOIT date based on chart abstraction, the first cancer-related event was identified with excellent validity (sensitivity, 87.0%; specificity, 93.3%; positive predictive value, 81.5%; negative predictive value, 95.5%). CONCLUSIONS: Although administrative data alone did not validly identify cancer-related events, administrative data in combination with chart collected EOIT dates was associated with excellent validity. The collection of EOIT dates by cancer registries would significantly expand the potential of administrative data linkage to assess cancer outcomes.

Do Primary Care Provider Strategies Improve Patient Participation in Colorectal Cancer Screening?

OBJECTIVES: Screening rates for colorectal cancer (CRC) remain suboptimal. The impact of provider strategies to enhance screening participation in the population is uncertain. The objective of this study was to determine the effect of provider strategies to increase screening in a single-payer system. METHODS: A population-based survey was conducted in primary care providers (PCPs) linked to patients using administrative data in Ontario, Canada. Patients were due for CRC screening from April 2012 to March 2013. Patients were followed up until 31 March 2014. We determined time to become up-to-date with CRC screening. Cox proportional hazards models examined the association between PCP strategies and uptake of screening, adjusted for physician and patient factors. RESULTS: A total of 717 PCPs and their 147,834 rostered patients due for CRC screening were included. Most physicians employed strategies to enhance screening participation, including electronic medical record use, reminders, generation of lists, audit and feedback reports, or designating staff responsible for screening. No single strategy was strongly associated with screening. For those >1 year overdue, a systematic approach to generate lists of patients overdue for screening was weakly associated with screening uptake (hazard ratio (HR)=1.14, 95% CI: 1.03-1.26, P=0.04 >5 years overdue vs. <1 year overdue). The use of multiple PCP strategies was associated with screening participation (HR=1.27, 95% CI: 1.16-1.39, P<0.0001 for PCPs using 4-5 vs. 0-1 strategies). Practice-based strategies were self-reported. CONCLUSIONS: In practice, while individual PCP strategies have little effect, the use of multiple strategies to enhance screening appears to improve CRC screening uptake in patients.

Corrigendum: Do Primary Care Provider Strategies Improve Patient Participation in Colorectal Cancer Screening?

This corrects the article DOI: 10.1038/ajg.2017.4.

Universal tumor screening for Lynch syndrome: health-care providers' perspectives.

PURPOSE: Population-based reflex testing of colorectal tumors can identify individuals with Lynch syndrome (LS), but there is debate regarding the type of patient discretion such a program warrants. We examined health-care providers' views and experiences to inform the design of a reflex-testing program and their perspectives regarding an opt-out option. METHODS: We interviewed providers managing LS or colorectal cancer patients, including surgeons, genetic counselors, oncologists, primary-care physicians, and gastroenterologists. Qualitative data were analyzed thematically using constant comparison techniques. RESULTS: Providers supported a reflex-testing program because of the current lack of coordinated immunohistochemistry (IHC) testing and underascertainment of LS patients as well as the opportunity to standardize the increasing use of genomic tests in practice. Most supported an opt-out after reflex testing because they felt that IHC is akin to other pathology tests, which are not optional. Some favored an opt-out before testing because of concern for patients experiencing distress, insurance discrimination, or a diagnostic odyssey that may be inconclusive. CONCLUSION: Providers support a reflex-testing program to improve the identification and management of suspected LS patients. However, how to support meaningful information provision to enable an opt-out without jeopardizing testing uptake and the anticipated public health benefits remains a policy challenge.Genet Med advance online publication 06 October 2016.

Patterns of diagnostic imaging and associated radiation exposure among long-term survivors of young adult cancer: a population-based cohort study.

BACKGROUND: Survivors of young adult malignancies are at risk of accumulated exposures to radiation from repetitive diagnostic imaging. We designed a population-based cohort study to describe patterns of diagnostic imaging and cumulative diagnostic radiation exposure among survivors of young adult cancer during a survivorship time period where surveillance imaging is not typically warranted. METHODS: Young adults aged 20-44 diagnosed with invasive malignancy in Ontario from 1992-1999 who lived at least 5 years from diagnosis were identified using the Ontario Cancer Registry and matched 5 to 1 to randomly selected cancer-free persons. We determined receipt of 5 modalities of diagnostic imaging and associated radiation dose received by survivors and controls from years 5-15 after diagnosis or matched referent date through administrative data. Matched pairs were censored six months prior to evidence of recurrence. RESULTS: 20,911 survivors and 104,524 controls had a median of 13.5 years observation. Survivors received all modalities of diagnostic imaging at significantly higher rates than controls. Survivors received CT at a 3.49-fold higher rate (95% Confidence Interval [CI]:3.37, 3.62) than controls in years 5 to 15 after diagnosis. Survivors received a mean radiation dose of 26 miliSieverts solely from diagnostic imaging in the same time period, a 4.57-fold higher dose than matched controls (95% CI: 4.39, 4.81). CONCLUSIONS: Long-term survivors of young adult cancer have a markedly higher rate of diagnostic imaging over time than matched controls, imaging associated with substantial radiation exposure, during a time period when surveillance is not routinely recommended.

The Initiative to Maximize Progress in Adolescent and Young Adult Cancer Therapy (IMPACT) Cohort Study: a population-based cohort of young Canadians with cancer.

BACKGROUND: Cancer is the leading cause of disease-related death in adolescents and young adults (AYA). Annual improvements in AYA cancer survival have been inferior to those observed in children and older adults. Prior studies of AYA with cancer have been limited by their focus on patients from select treatment centres, reducing generalizability, or by being population-based but lacking diagnostic and treatment details. There is a critical need to conduct population-based studies that capture detailed patient, disease, treatment and system-level data on all AYA regardless of treatment location. METHODS/DESIGN: We will create a cohort of all AYA (aged 15-21 years) at the time of diagnosis with any malignancy between 1992 and 2011 in Ontario, Canada (n = 5,394). Subjects will be identified through the Ontario Cancer Registry and the final cohort will be expanded to include 2012 diagnoses, as these data become available. Detailed diagnostic, treatment and outcome data for those patients treated at a pediatric cancer centre will be provided by a population-based pediatric cancer registry (n = 1,030). For 15-18 year olds treated at adult centres (n = 923) and all 19-21 year olds (n = 3396), trained abstractors will collect the comparable data elements from medical records. We will link these data to population-based administrative health data that include physician billings, hospitalizations and emergency room visits. This will allow descriptions of health care access and use prior to cancer diagnosis, and during and after treatment. DISCUSSION: The IMPACT cohort will serve as a platform for addressing questions that span the AYA cancer journey. These will include determining which factors influence where AYA receive care, the impact of locus of care on the types and intensity of cancer therapy, appropriateness of surveillance for disease recurrence, access to clinical trials, and receipt of palliative and survivor care. Findings using the IMPACT cohort have the potential to lead to changes in practice and cancer policy, reduce mortality, and improve quality of life for AYA with cancer. The IMPACT data platform will be a permanent resource, accessible to researchers across Canada.

Results from a community-based program evaluating the effect of changing smoking status on asthma symptom control.

BACKGROUND: Cigarette smoking has been associated with accelerated decline in lung function, increased health services use and asthma severity in patients with asthma. Previous studies have provided insight into how smoking cessation improves lung function among asthma patients, however, fail to provide measurable asthma symptom-specific outcomes after smoking cessation. The objective of this study was to measure the effect of changing smoking status on asthma symptom control and health services use in adults with asthma. METHODS: The study was conducted in eight primary care practices across Ontario, Canada participating in a community-based, participatory, and evidence-based Asthma Care Program. Patients aged 18 to 55 identified with physician-diagnosed mild to moderate asthma were recruited. In addition to receiving clinical asthma care, participants were administered a questionnaire at baseline and 12-month follow-up visits to collect information on demographics, smoking status, asthma symptoms and routine health services use. The effect of changing smoking status on asthma symptom control was compared between smoking groups using Chi-square and Fisher's exact tests where appropriate. Mixed effect models were used to measure the impact of the change in smoking status on asthma symptom and health services use while adjusting for covariates. RESULTS: This study included 519 patients with asthma; 11% of baseline smokers quit smoking while 4% of baseline non-smokers started smoking by follow-up. Individuals who quit smoking had 80% lower odds of having tightness in the chest (Odds ratio (OR) = 0.21, 95% CI: 0.06, 0.82) and 76% lower odds of night-time symptoms (OR = 0.24, 95% CI: 0.07, 0.85) compared to smokers who continued to smoke. Compared to those who remained non-smokers, those who had not been smoking at baseline but self-reported as current smoker at follow-up had significantly higher odds of chest tightness (OR = 1.36, 95% CI: 1.10, 1.70), night-time symptoms (OR = 1.55, 95% CI: 1.09, 2.20), having an asthma attack in the last six months (OR = 1.43, 95% CI: 1.17, 1.75) and visiting a walk-in clinic for asthma (OR = 4.57, 95% CI: 1.44, 14.49). CONCLUSIONS: This study provides practitioners measurable and clinically important findings that associate smoking cessation with improved asthma control. Health practitioners and asthma programs can use powerful education messages to emphasize the benefits of smoking cessation as a priority to current smokers.

Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review.

BACKGROUND: Cancer treatments have the potential to cause infertility among women of reproductive age. Many cancer patients do not receive sufficient oncofertility information or referrals to reproductive specialists prior to starting cancer treatment. While health care providers cite lack of awareness on the available oncofertility resources, the majority of cancer patients use the internet as a resource to find additional information to supplement discussions with their providers. OBJECTIVE: Our aim was to identify and characterize Web-based oncofertility decision aids and health education materials accessible for women of reproductive age with a diagnosis of any cancer. METHODS: We searched five databases and the gray literature for the years 1994-2018. The developer and content information for identified resources was extracted. Each resource underwent a quality assessment. RESULTS: We identified 31 open access resources including 4 decision aids and 27 health educational materials. The most common fertility preservation options listed in the resources included embryo (31/31, 100%), egg (31, 100%), and ovarian tissue freezing (30, 97%). Notably, approximately one-third (11, 35%) contained references and 5 (16%) had a reading level of grade 8 or below. Resources were of varying quality; two decision aids from Australia and the Netherlands, two booklets from Australia and the United Kingdom, and three websites from Canada and the United States rated as the highest quality. CONCLUSIONS: This comprehensive review characterizes numerous resources available to support patients and providers with oncofertility information, counseling, and decision making. More focus is required to improve the awareness and the access of existing resources among patients and providers. Providers can address patient information needs by leveraging or adapting existing resources to support clinical discussions and their specific patient population.

Cancer evaluation in the assessment of solid organ transplant candidates: A systematic review of clinical practice guidelines.

BACKGROUND: Active malignancies are a contraindication to transplantation, as immunosuppression can lead to worse cancer outcomes; therefore, ensuring transplant candidates are free of malignancy before transplantation is essential. This systematic review assesses the availability, quality, and consistency of recommended cancer evaluation prior to transplantation in Clinical Practice Guidelines (CPGs) for the selection of solid organ transplant candidates. METHODS: We systematically searched for CPGs for the assessment of transplant candidates. The characteristics of included CPGs, strength of recommendations and supporting evidence were extracted. A quality assessment of the CPGs was conducted using the AGREE II tool. RESULTS: We identified 52 CPG for the selection of solid organ transplant candidates. Only 13 (25%) included recommendations for cancer evaluation as part of the assessment of transplant candidates. Most recommended age and sex appropriate cancer screening as per the general population guidelines. Recommendations to evaluate for other malignancies and for high-risk candidates were variable. Most recommendations were based on expert opinion and only two CPGs provided an explicit link between the recommendations and supporting evidence. CONCLUSION: There is a lack of clear and consistent recommendations for pretransplant cancer evaluation in existing CPGs. Although there is some consensus regarding the indication to screen for cancer as per the recommendations for the general population, these recommendations are not an appropriate risk reduction strategy for transplant candidates. Standardized protocols to ensure transplant candidates are cancer free prior to transplantation are needed.

Outcomes of Solid Organ Transplant Recipients With Preexisting Malignancies in Remission: A Systematic Review and Meta-Analysis.

BACKGROUND: Solid organ transplant recipients (SOTR) with a pretransplant malignancy (PTM) are at increased risk for cancer recurrence. However, it is unclear whether differences in survival and incidence of posttransplant de novo malignancies exist between recipients with PTM and those without PTM. We designed a systematic review to synthesize all available evidence assessing these outcomes. METHODS: A systematic search was performed in MEDLINE, EMBASE, and Cochrane Library to identify studies comparing the following outcomes in SOTR by PTM status: (1) all-cause mortality, (2) cancer-specific mortality, and (3) incidence of posttransplant de novo malignancy. Risk of bias was assessed using the Newcastle-Ottawa Scale. RESULTS: Thirty-two cohort studies were included. Recipients with PTM were at increased risk of all-cause mortality compared to recipients without PTM (pooled hazard ratio [HR], 1.51; 95% confidence interval [CI], 1.27-1.81). Similarly, recipients with PTM were 3 times more likely to die of cancer (pooled HR, 3.13; 95% CI, 2.29-4.27). The pooled HR for developing posttransplant de novo malignancy was also increased (HR, 1.92; 95% CI, 1.52-2.42). The association of all-cause mortality and SOTR with PTM did not vary by transplanted organ. CONCLUSIONS: Pretransplant malignancy is associated with increased risk of all cause-mortality, cancer-specific mortality and of developing de novo malignancies after transplantation compared with those without PTM. These results reaffirm the need for careful selection of transplant recipients with PTM. Tailored screening and management strategies should be developed for this group of patients.

Systematic Review and Meta-study Synthesis of Qualitative Studies Evaluating Facilitators and Barriers to Participation in Colorectal Cancer Screening.

Screening reduces the incidence, morbidity, and mortality of colorectal cancer, yet participation tends to be low. We undertook a systematic review and meta-study synthesis of qualitative studies to identify facilitators and barriers to colorectal cancer screening participation. We searched major bibliographic databases for records published in all languages from inception to February 2015. Included primary studies that elicited views and perceptions towards colorectal cancer screening were appraised for relevance and quality. We used a two-stage synthesis to create an interpretation of colorectal cancer screening decisions grounded in primary studies; a thematic analysis to group themes and systematically compare studies and a meta-synthesis to generate an expanded theory of colorectal cancer screening participation. Ninety-four studies were included. The decision to participate in colorectal cancer screening depended on an individual's awareness of colorectal cancer screening. Awareness affected views of cancer, attitudes towards colorectal cancer screening modalities, and motivation for screening. Factors mediating awareness included public education to address misconceptions, primary care physician efforts to recommend screening, and the influence of friends and family. Specific barriers to participation in populations with lower participation rates included language barriers, logistical challenges to attending screening tests, and cultural beliefs. This study identifies key barriers, facilitators, and mediators to colorectal cancer screening participation. Cancer Epidemiol Biomarkers Prev; 25(6); 907-17. ©2016 AACR.