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Abstract Background Lung cancer is one of the most common cancers and causes of cancer death in Canada. Some previous literature suggests that socioeconomic inequalities in lung cancer screening, treatment and survival may exist. The objective of this study was to compare overall survival for immigrants versus long-term residents of Ontario, Canada among patients diagnosed with lung cancer. Methods This population-based retrospective cohort study utilized linked health administrative databases and identified all individuals (immigrants and long-term residents) aged 40 + years diagnosed with incident lung cancer between April 1, 2012 and March 31, 2017. The primary outcome was 5-year overall survival with December 31, 2019 as the end of the follow-up period. We implemented adjusted Cox proportional hazards models stratified by age at diagnosis, sex, and cancer stage at diagnosis to examine survival. Results Thirty-eight thousand seven hundred eighty-eight individuals diagnosed with lung cancer were included in our cohort including 7% who were immigrants. Immigrants were younger at diagnosis and were more likely to reside in the lowest neighbourhood income quintile (30.6% versus 24.5%) than long-term residents. After adjusting for age at diagnosis, neighbourhood income quintile, comorbidities, visits to primary care in the 6 to 30 months before diagnosis, continuity of care, cancer type and cancer stage at diagnosis, immigrant status was associated with a lower hazard of dying 5-years post-diagnosis for both females (0.7; 95% CI 0.6–0.8) and males (0.7; 95% CI 0.6–0.7) in comparison to long-term residents. This trend held in adjusted models stratified by cancer stage at diagnosis. For example, female immigrants diagnosed with early stage lung cancer had a hazard ratio of 0.5 (95% CI 0.4–0.7) in comparison to long-term residents. Conclusion Overall survival post diagnosis with lung cancer was better among Ontario immigrants versus long-term residents. Additional research, potentially on the protective effects of immigrant enclave and the intersection of immigrant status with racial/ethnic identity, is needed to further explore why better overall survival for immigrants remained.

Abstract Background The BETTER intervention is an effective comprehensive evidence-based program for chronic disease prevention and screening (CDPS) delivered by trained prevention practitioners (PPs), a new role in primary care. An adapted program, BETTER HEALTH, delivered by public health nurses as PPs for community residents in low income neighbourhoods, was recently shown to be effective in improving CDPS actions. To obtain a nuanced understanding about the CDPS needs of community residents and how the BETTER HEALTH intervention was perceived by residents, we studied how the intervention was adapted to a public health setting then conducted a post-visit qualitative evaluation by community residents through focus groups and interviews. Methods We first used the ADAPT-ITT model to adapt BETTER for a public health setting in Ontario, Canada. For the post-PP visit qualitative evaluation, we asked community residents who had received a PP visit, about steps they had taken to improve their physical and mental health and the BETTER HEALTH intervention. For both phases, we conducted focus groups and interviews; transcripts were analyzed using the constant comparative method. Results Thirty-eight community residents participated in either adaptation (n = 14, 64% female; average age 54 y) or evaluation (n = 24, 83% female; average age 60 y) phases. In both adaptation and evaluation, residents described significant challenges including poverty, social isolation, and daily stress, making chronic disease prevention a lower priority. Adaptation results indicated that residents valued learning about CDPS and would attend a confidential visit with a public health nurse who was viewed as trustworthy. Despite challenges, many recipients of BETTER HEALTH perceived they had achieved at least one personal CDPS goal post PP visit. Residents described key relational aspects of the visit including feeling valued, listened to and being understood by the PP. The PPs also provided practical suggestions to overcome barriers to meeting prevention goals. Conclusions Residents living in low income neighbourhoods faced daily stress that reduced their capacity to make preventive lifestyle changes. Key adapted features of BETTER HEALTH such as public health nurses as PPs were highly supported by residents. The intervention was perceived valuable for the community by providing access to disease prevention. Trial registration #NCT03052959, 10/02/2017.

Purpose: Few studies have examined the relationship between duration of oxaliplatin-containing adjuvant chemotherapy for stage III colon cancer and mortality in routine practice. We examined the association between treatment with 50% versus >85% of a maximal course of adjuvant therapy (eight cycles of CAPOX, twelve cycles of FOLFOX) and mortality in stage III colon cancer. Methods: Using linked databases, we identified Ontarians aged ≥18 years at diagnosis of stage III colon cancer between 2007 and 2019. In the primary comparison, we compared patients who received 50% or >85% of a maximal course of adjuvant therapy; in a secondary comparison, we evaluated a dose effect across patients who received FOLFOX in one-cycle increments from six to ten cycles against >85% (more than ten cycles) of a maximal course of FOLFOX. The main outcomes were overall and cancer-specific mortality. Follow-up began 270 days after adjuvant treatment initiation and terminated at the first of the outcome of interest, loss of eligibility for Ontario’s Health Insurance Program, or study end. Overlap propensity score weights accounted for baseline between-group differences. We determined the hazard ratio, estimating the association between mortality and treatment. Non-inferiority was concluded in the primary comparison for either outcome if the upper limit of the two-sided 95% CI was ≤1.11, which is the margin used in the International Duration Evaluation of Adjuvant Chemotherapy Collaboration. Results: We included 3546 patients in the analysis of overall mortality; 486 (13.7%) received 50% and 3060 (86.3%) received >85% of a maximal course of therapy. Median follow-up was 5.4 years, and total follow-up was 20,510 person-years. There were 833 deaths. Treatment with 50% of a maximal course of adjuvant therapy was associated with a hazard ratio of 1.13 (95% CI 0.88 to 1.47) for overall mortality and a subdistribution hazard ratio of 1.31 (95% CI 0.91 to 1.87) for cancer-specific mortality versus >85% of a maximal course of therapy. In the secondary comparison, there was a trend toward higher overall mortality in patients treated with shorter durations of therapy, though confidence intervals overlapped considerably. Conclusion: We could not conclude that treatment with 50% of a maximal course is non-inferior to >85% of a maximal course of adjuvant therapy for mortality in stage III colon cancer. Clinicians and patients engaging in decision-making around treatment duration in this context should carefully consider the trade-off between treatment effectiveness and adverse effects of treatment.

Abstract Background Symptom burden in adolescents and young adults (AYA) with cancer is poorly characterized but impacts quality of life. Methods All Ontario, Canada AYA aged 15–29 years at diagnosis between 2010 and 2018 were linked to population‐based healthcare databases, including to Edmonton Symptom Assessment System‐revised (ESAS) scores, an 11‐point scale routinely obtained at the time of cancer‐related outpatient visits and collected provincially. Multistate models estimated mean duration of symptom severity states [none (0) vs. mild (1 vs. 2 vs. 3) vs. moderate (4–6) vs. severe (7–10)], trajectories, and subsequent mortality risk. Variables associated with severe symptoms were also determined. Results In total, 4296 AYA with ≥1 ESAS score within a year of diagnosis were included (median age 25 years). Prevalent moderate/severe symptoms included fatigue (59% of AYA) and anxiety (44%). Across symptom type, AYA reporting moderate symptoms were likelier to subsequently experience improvement versus worsening. Risk of death within 6 months increased with increasing symptom burden and was highest in AYA with severe dyspnea (9.0%), pain (8.0%), or drowsiness (7.5%). AYA in the poorest urban neighborhoods were more likely to experience severe symptoms than in the wealthiest areas, with twice the odds of reporting severe depression [adjusted odds ratio (OR) 1.95, 95th confidence interval (95% CI) 1.37–2.78], pain (OR: 1.94, 95% CI: 1.39–2.70), and dyspnea (OR: 1.96, 95% CI: 1.27–3.02). Conclusions AYA with cancer experience substantial symptom burden. Risk of death increased with symptom severity. Interventions targeting cancer fatigue and anxiety, and targeting AYA in lower‐income neighborhoods, are likely to improve quality of life in this population.

Outcome disparities between adults

Abstract Background The use of social media presents a unique opportunity for cancer screening programs to motivate individuals to get screened. However, we need a better understanding of what types of social media messages for colorectal cancer (CRC) screening are preferred. The objective of this study was to develop social media messages promoting CRC screening uptake to identify messages preferred by the target audience. Methods We conducted a qualitative descriptive study and collected data through focus groups with Facebook users of screen-eligible age. Participants were presented with social media messages and asked to provide feedback. Messages were informed by the Health Belief Model, current evidence regarding screening communication and health communication and social media best practices. Focus groups were audio-recorded and transcribed and analysis was completed by two independent coders. If messages generated sufficient discussion, we developed a recommendation regarding the use of the message in a future social media campaign. Recommendations included: strongly consider using this message, consider using this message, proceed with caution, and do not use this message. General considerations about social media campaigns were also noted. Results A total of 45 individuals participated in six focus groups. We developed recommendations for 7 out of the 18 messages tested; 1 was classified as strongly consider using this message, 4 as consider using this message and 2 as proceed with caution. The data suggest that participants preferred social media messages that were believed to be credible, educational, and with a positive or reassuring tone. Preferred messages tended to increase awareness about CRC risk and screening and prompted participants to ask questions, and to want to learn more about what they could do to lower their risk. Messages that were viewed as humorous, strange or offensive or that had a negative or excessively fearful tone were less well received by study participants. Conclusions Facebook users prefer social media messages for CRC that have a positive or reassuring tone, are educational, and that have a credible ad sponsor. Campaign planners should proceed with caution when considering messages that use humor or a fearful tone to avoid undermining their campaign objectives.

The Strategy for Patient Oriented Research (SPOR) Evidence Alliance is a research initiative in Canada whose mission is to promote the synthesis, dissemination, and integration of research results into health care and public health decision-making and clinical practice. The aim of this paper is to (i) outline the governance and committee structure of the SPOR Evidence Alliance, (ii) outline the procedures for patient and health system decision-maker engagement, and (iii) present the capacity-building strategy for governance members. The governance structure includes the following six standing committees: the International Advisory Committee, Steering Committee, Executive Committee, Knowledge Translation Committee, Partnerships Committee, and Training and Capacity Development Committee. The guiding principles embrace inclusiveness, support, mutual respect, transparency, and co-building. There are currently 64 committee members across the six committees, 13 patient and public partners, 8 health system decision-makers, 7 research trainees, and 36 researchers. A multi-disciplinary and diverse group of people in Canada are represented from all regions and at various levels of training in knowledge generation, exchange, and translation. This collaborative model makes the SPOR Evidence Alliance strong and sustainable by leveraging the knowledge, lived experiences, expertise, skills, and networks among its 342 members and 12 principal investigators.

Objectives:. To evaluate the impact of the COVID-19 pandemic on solid organ transplantation. Background:. COVID-19 caused unprecedented disruption to solid organ transplantation (kidney, liver, heart, lung). Concerns about safety and decreases in deceased donors due to pandemic lockdowns have been described as potential causes. Methods:. We report population-based rates of transplantation during the first 3 waves of COVID-19 in Ontario, Canada (March 1, 2020–July 3, 2021) versus a pre-COVID-19 baseline period (January 1, 2017–February 29, 2020). Poisson models were used to predict transplantation rates during COVID-19, based on pre-COVID-19 rates, and generate observed to expected rate ratios (RRs). Ninety-day transplant outcomes (mortality, retransplantation, transplant nephrectomy) were captured. Results:. A 34.4% decrease (RR, 0.656; 95% confidence interval [CI], 0.586–0.734) in transplant rates was observed, coinciding with wave 1 and the deployment of a provincial transplant triaging system. Transplants decreased by 14.6% in wave 2 (RR, 0.854; 95% CI, 0.770–0.947) and 23.1% in wave 3 (RR, 0.769; 95% CI, 0.690–0.857) despite the triaging system not being activated. Overall, there was a 24.3% decrease (RR, 0.757; 95% CI, 0.679–0.844) in transplant rates, equivalent to 409 fewer transplants. No sustained changes were observed in heart or liver but sustained and large decreases were seen for lung (RR, 0.664; 95% CI, 0.482–0.915) and kidney (RR, 0.721; 95% CI, 0.602–0.863) transplantation. A low prevalence (1.7%) of COVID-19 infection within 90 days of transplantation was seen. No differences were observed in other 90-day outcomes. Conclusions:. Early safety concerns limited transplantation to immediate life-saving procedures; however, the reductions in kidney and lung transplants continued for the rest of the pandemic, where no restrictions were in place.

Purpose: Previous studies have shown an increase in the number of women electing for immediate breast reconstruction at the time of mastectomy. Although often not known at the time, some of these women will require postoperative radiation therapy. The purpose of this study was to investigate if exposure to radiation therapy after mastectomy with immediate breast reconstruction is associated with an increased risk of further surgery to manage complications arising from radiation. Methods and Materials: This retrospective, population-based cohort study included all patients who underwent mastectomy with immediate reconstruction from 2007 to 2014 in the province of Ontario, Canada. Exposure to adjuvant radiation therapy was captured using data from Ontario Health. The study outcome was reoperation for breast reconstruction performed during the follow-up window. Cox proportional hazard models were used to assess the effect of radiation therapy exposure on risk of breast reconstruction reoperation. Results: We identified 2342 patients who underwent mastectomy with immediate reconstruction over an 8-year period in Ontario, of whom 378 (16.1%) underwent adjuvant radiation therapy. Patients who received radiation were significantly more likely to undergo reoperation during follow-up (hazard ratio, 1.76; 95% confidence interval, 1.49-2.08; P < .0001). Patients with implant-based reconstructions (n = 1629, 69.6%) were not more likely to undergo reoperation than those with flap-based procedures (n = 713, 30.4%) (hazard ratio, 1.01; 95% confidence interval, 0.85-1.21; P = .885). Conclusions: Adjuvant radiation therapy initiated after mastectomy with immediate breast reconstruction is associated with an increased risk of additional breast reconstruction surgery, regardless of the type of reconstruction used. Patients with breast cancer who choose to undergo immediate reconstruction after mastectomy should be advised that additional reconstruction procedures may be required.

Abstract Purpose Adolescent and young adult cancer survivors require lifelong healthcare to address the late effects of therapy. We examined the impact of different provider models of long‐term follow‐up (LTFU) care on adherence to recommended surveillance. Methods We conducted a retrospective cohort study using administrative health databases in Ontario, Canada. Five‐year survivors were identified from IMPACT, a database of patients aged 15–20.9 years at diagnosis of six cancers between 1992 and 2010. We defined three models of LTFU care hierarchically: specialized survivor clinics (SCCs), general cancer clinics (GCCs), and family physician (FP). We assessed adherence to the Children's Oncology Group surveillance guidelines for cardiomyopathy and breast cancer. Multistate models assessed adherence transitions and impacts of LTFU attendance. Results A total of 1574 survivors were followed for a mean of 9.2 years (range 4.3–13.9 years) from index (5‐year survival). The highest level of LTFU attended in the first 2‐years post‐index was a GCC (47%); only 16.7% attended a SCC. By the end of study, 72% no longer attended any of the models of care and only 2% still attended an SCC. Among 188 survivors requiring breast cancer surveillance, 6.9% were adherent to their first required surveillance testing. Attendance at a SCC in the previous year and higher cumulative FP or GCC visits increased the rate of subsequently becoming adherent. Among 857 survivors requiring cardiomyopathy surveillance, 11% were adherent at study entry. Each subsequent SCC visit led to an 11.3% (95% CI: 1.05–1.18) increase in the rate of becoming adherent. Conclusion LTFU attendance and surveillance adherence are sub‐optimal. SCC follow‐up is associated with greater adherence, but few survivors receive such care, and this proportion diminished over time. Interventions are needed to improve LTFU attendance and promote surveillance adherence.

Abstract Background Paucity of RCTs of non-drug technologies lead to widespread dependence on non-randomized studies. Relationship between nonrandomized study design attributes and biased estimates of treatment effects are poorly understood. Our purpose was to estimate the bias associated with specific nonrandomized study attributes among studies comparing transcatheter aortic valve implantation with surgical aortic valve replacement for the treatment of severe aortic stenosis. Results We included 6 RCTs and 87 nonrandomized studies. Surgical risk scores were similar for comparison groups in RCTs, but were higher for patients having transcatheter aortic valve implantation in nonrandomized studies. Nonrandomized studies underestimated the benefit of transcatheter aortic valve implantation compared with RCTs. For example, nonrandomized studies without adjustment estimated a higher risk of postoperative mortality for transcatheter aortic valve implantation compared with surgical aortic valve replacement (OR 1.43 [95% CI 1.26 to 1.62]) than high quality RCTs (OR 0.78 [95% CI 0.54 to 1.11). Nonrandomized studies using propensity score matching (OR 1.13 [95% CI 0.85 to 1.52]) and regression modelling (OR 0.68 [95% CI 0.57 to 0.81]) to adjust results estimated treatment effects closer to high quality RCTs. Nonrandomized studies describing losses to follow-up estimated treatment effects that were significantly closer to high quality RCT than nonrandomized studies that did not. Conclusion Studies with different attributes produce different estimates of treatment effects. Study design attributes related to the completeness of follow-up may explain biased treatment estimates in nonrandomized studies, as in the case of aortic valve replacement where high-risk patients were preferentially selected for the newer (transcatheter) procedure.

Lung cancer is the most common cancer and cause of cancer death in Canada, with approximately 50% of cases diagnosed at stage IV. Sociodemographic inequalities in lung cancer diagnosis have been documented, but it is not known if inequalities exist with respect to immigration status. We used multiple linked health-administrative databases to create a cohort of Ontarians 40–105 years of age who were diagnosed with an incident lung cancer between 1 April 2012 and 31 March 2017. We used modified Poisson regression with robust standard errors to examine the risk of diagnosis at late vs. early stage among immigrants compared to long-term residents. The fully adjusted model included age, sex, neighborhood-area income quintile, number of Aggregated Diagnosis Group (ADG) comorbidities, cancer type, number of prior primary care visits, and continuity of care. Approximately 62% of 38,788 people with an incident lung cancer from 2012 to 2017 were diagnosed at a late stage. Immigrants to the province were no more likely to have a late-stage diagnosis than long-term residents (63.5% vs. 62.0%, relative risk (RR): 1.01 (95% confidence interval (CI): 0.99–1.04), adjusted relative risk (ARR): 1.02 (95% CI: 0.99–1.05)). However, in fully adjusted models, people with more comorbidities were less likely to have a late-stage diagnosis (adjusted relative risk (ARR): 0.82 (95% CI: 0.80–0.84) for those with 10+ vs. 0–5 ADGs). Compared to adenocarcinoma, small cell carcinoma was more likely to be diagnosed at a late stage (ARR: 1.29; 95% CI: 1.27–1.31), and squamous cell (ARR: 0.89; 95% CI: 0.87–0.91) and other lung cancers (ARR: 0.93; 95% CI: 0.91–0.94) were more likely to be diagnosed at an early stage. Men were also slightly more likely to have late-stage diagnosis in the fully adjusted model (ARR: 1.08; 95% CI: 1.05–1.08). Lung cancer in Ontario is a high-fatality cancer that is frequently diagnosed at a late stage. Having fewer comorbidities and being diagnosed with small cell carcinoma was associated with a late-stage diagnosis. The former group may have less health system contact, and the latter group has the lung cancer type most closely associated with smoking. As lung cancer screening programs start to be implemented across Canada, targeted outreach to men and to smokers, increasing awareness about screening, and connecting every Canadian with primary care should be system priorities.

Abstract Background Sedation is commonly used in gastrointestinal endoscopy; however, considerable variability in sedation practices has been reported. The objective of this review was to identify and synthesize existing recommendations on sedation practices for routine gastrointestinal endoscopy procedures. Methods We systematically reviewed guidelines and position statements identified through a search of PubMed, guidelines databases, and websites of relevant professional associations from January 1, 2005 to May 10, 2019. We included English-language guidelines/position statements with recommendations relating to sedation for adults undergoing routine gastrointestinal endoscopy. Documents with guidance only for complex endoscopic procedures were excluded. We extracted and synthesized recommendations relating to: 1) choice of sedatives, 2) sedation administration, 3) personnel responsible for monitoring sedated patients, 4) skills and training of individuals involved in sedation, and 5) equipment required for monitoring sedated patients. We assessed the quality of included documents using the Appraisal of Guidelines for Research & Evaluation (AGREE) II tool. Results We identified 19 guidelines and 7 position statements meeting inclusion criteria. Documents generally agreed that a single, trained registered nurse can administer moderate sedation, monitor the patient, and assist with brief, interruptible tasks. Documents also agreed on the routine use of pulse oximetry and blood pressure monitoring during endoscopy. However, recommendations relating to the drugs to be used for sedation, the healthcare personnel capable of administering propofol and monitoring patients sedated with propofol, and the need for capnography when monitoring sedated patients varied. Only 9 documents provided a grade or level of evidence in support of their recommendations. Conclusions Recommendations for sedation practices in routine gastrointestinal endoscopy differ across guidelines/position statements and often lack supporting evidence with potential implications for patient safety and procedural efficiency.

Objectives:. Determine if axillary staging is associated with survival in elderly women with breast cancer. Background:. Axillary staging in women ≥ 70 years with early-stage breast cancer is controversial. Older randomized evidence has not shown axillary staging improves survival, but recent observational studies have been mixed and widespread de-implementation of the practice has not occurred. Methods:. This was a population-based cohort study using the Surveillance, Epidemiology, and End Results registry. Women ≥ 70 years diagnosed with T1–T2 invasive breast cancer from 2005 to 2015 were included. Overlap propensity score weighting was used to adjust for confounders. Overall survival (OS) was determined and hazard ratios (HRs) reported with 95% confidence intervals (CIs). Breast cancer-specific survival (BCSS) was determined using competing risks analysis and subdistribution hazard ratios (sdHRs) reported. Additional adjustment was performed for receipt of chemotherapy and radiotherapy. Results:. One hundred forty-four thousand three hundred twenty-nine elderly women were included, of whom 22,621 (15.7%) did not undergo axillary staging. After overlap propensity score weighting, baseline characteristics were well balanced between the 2 groups. Women who did not undergo axillary staging were significantly less likely to receive chemotherapy (adjusted relative risk, 0.58; 95% CI, 0.54–0.62) or radiotherapy (adjusted relative risk, 0.53; 95% CI, 0.52–0.54), and had significantly worse OS (adjusted HR, 1.22; 95% CI, 1.19–1.25), and BCSS (adjusted sdHR, 1.14; 95% CI, 1.08–1.21) compared to those that had staging. Conclusions:. These findings suggest elderly women with early-stage breast cancer who do not undergo axillary staging experience worse outcomes. Reasons for this disparity may be multifactorial and require further investigation.

Abstract Hodgkin lymphoma (HL) is a common adolescent and young adult (AYA) cancer. While outcome disparities between pediatric vs. adult centers [locus of care (LOC)] have been demonstrated in other AYA cancers such as acute lymphoblastic leukemia, they have not been well studied in HL. We therefore compared population‐based treatment patterns and outcomes in AYA HL by LOC. The IMPACT Cohort includes data on all Ontario, Canada AYA (15‐21 years) diagnosed with HL between 1992 and 2012. Linkage to population‐based health administrative data identified late effects. We examined LOC‐based differences in treatment modalities, cumulative doses, event‐free survival (EFS), overall survival (OS), and late effects. Among 954 AYA, 711 (74.5%) received therapy at adult centers. Pediatric center AYA experienced higher rates of radiation therapy but lower cumulative doses of doxorubicin and bleomycin. 10‐year EFS did not differ between pediatric vs. adult cancer vs. community centers (83.8% ± 2.4% vs. 82.8% ± 1.6% vs. 82.7%±3.0%; P = .71); LOC was not significantly associated with either EFS or OS in multivariable analyses. Higher incidences of second malignancies in pediatric center AYA and of cardiovascular events in adult center AYA were observed, but were not significant. In conclusion, while pediatric and adult centers used different treatment strategies, outcomes were equivalent. Differences in treatment exposures are however likely to result in different late‐effect risks. Protocol choice should be guided by individual late‐effect risk.

Abstract Background Women with ductal carcinoma in situ (DCIS) report poor patient-clinician communication, and long-lasting confusion and anxiety about their treatment and prognosis. Research shows that patient-centred care (PCC) improves patient experience and outcomes. Little is known about the clinician experience of delivering PCC for DCIS. This study characterized communication challenges faced by clinicians, and interventions they need to improve PCC for DCIS. Methods Purposive and snowball sampling were used to recruit Canadian clinicians by specialty, gender, years of experience, setting, and geographic location. Qualitative interviews were conducted by telephone. Data were analyzed using constant comparison. Findings were mapped to a cancer-specific, comprehensive PCC framework to identify opportunities for improvement. Results Clinicians described approaches they used to address the PCC domains of fostering a healing relationship, exchanging information, and addressing emotions, but do not appear to be addressing the domains of managing uncertainty, involving women in making decisions, or enabling self-management. However, many clinicians described challenges or variable practices for all PCC domains but fostering a healing relationship. Clinicians vary in describing DCIS as cancer based on personal beliefs. When exchanging information, most find it difficult to justify treatment while assuring women of a good prognosis, and feel frustrated when women remain confused despite their efforts to explain it. While they recognize confusion and anxiety among women, clinicians said that patient navigators, social workers, support groups and high-quality information specific to DCIS are lacking. Despite these challenges, clinicians said they did not need or want communication interventions. Conclusions Findings represent currently unmet opportunities by which to help clinicians enhance PCC for DCIS, and underscore the need for supplemental information and supportive care specific to DCIS. Future research is needed to develop and test communication interventions that improve PCC for DCIS. If effective and widely implemented, this may contribute to improved care experiences and outcomes for women diagnosed with and treated for DCIS.

Abstract Background Patient‐centred care (PCC) improves health‐care experiences and outcomes. Women with ductal carcinoma in situ (DCIS) and clinicians have reported communication difficulties. Little prior research has studied how to improve communication and PCC for DCIS. Objective This study explored how to achieve PCC for DCIS. Design Canadian women treated for DCIS from five provinces participated in semi‐structured focus groups based on a 6‐domain cancer‐specific PCC framework to discuss communication about DCIS. Data were analysed using constant comparative technique. Setting and Participants Thirty‐five women aged 30 to 86 participated in five focus groups at five hospitals. Results Women said their clinicians used multiple approaches for fostering a healing relationship; however, most described an absence of desired information or behaviour to exchange information, respond to emotions, manage uncertainty, make decisions and enable self‐management. Most women were confused by terminology, offered little information about the risks of progression/recurrence, uninformed about treatment benefits and risks, frustrated with lack of engagement in decision making, given little information about follow‐up plans or self‐care advice, and received no acknowledgement or offer of emotional support. Discussion and Conclusions By comparing the accounts of women with DCIS to a PCC framework, we identified limitations and inconsistencies in women's lived experience of communication about DCIS, and approaches by which clinicians can more consistently achieve PCC for DCIS. Future research should develop and evaluate informational tools to support PCC for DCIS.

Abstract Active surveillance (AS) in the management of small, low risk papillary thyroid cancer (PTC) as an alternative option to thyroidectomy, is an area of active research. A national Canadian study is proposed to evaluate the long-term outcomes of patients with small, low risk PTC who choose AS or surgery. This letter describes the proceedings of a national investigator meeting to plan the study. Graphical abstract

Despite organized provincial cancer screening programs, people living with low income consistently have lower rates of screening in Ontario, Canada than their more socioeconomically advantaged peers. We previously published results of a two-phase, exploratory qualitative study involving both interviews and focus groups whose objective was to integrate knowledge of people living with low income on how to improve primary care strategies aimed at increasing cancer screening uptake. In the current paper, we report previously unpublished findings from that study that identify how taking a community outreach approach in primary care may lead to increased cancer screening uptake among people living with low income. Participants told us that they saw value in a community outreach approach to cancer screening. They recommended specific actionable approaches, in particular, mobile community-based screening and community information sessions, and recommended taking an ethno-specific lens depending on the communities being targeted. Participants expressed a desire for primary care providers to go out into the community to learn more about the whole patient, such as could be achieved with home visits, but they simultaneously believed that this may be challenging in urban settings and in the context of perceived physician shortages. Models of primary care that provide support to an entire local community and provide some of their services directly in that community may have a meaningful impact on cancer screening for socially marginalized groups.

Abstract Background Premenopausal breast cancer patients are at risk of treatment-related infertility. Many patients do not receive sufficient fertility information before treatment. As such, our team developed and alpha tested the Begin Exploring Fertility Options, Risks, and Expectations decision aid (BEFORE DA). Methods The BEFORE DA development process was guided by the International Patient Decision Aids Standards and the Ottawa Decision Support Framework. Our team used integrated knowledge translation by collaborating with multiple stakeholders throughout the development process including breast cancer survivors, multi-disciplinary health care providers (HCPs), advocates, and cancer organization representatives. Based on previously conducted literature reviews and a needs assessment by our team – we developed a paper prototype. The paper prototype was finalized at an engagement meeting with stakeholders and created into a graphically designed paper and mirrored online decision aid. Alpha testing was conducted with new and previously engaged stakeholders through a questionnaire, telephone interviews, or focus group. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. Results Our team developed an 18-page paper prototype containing information deemed valuable by stakeholders for fertility decision-making. The engagement meeting brought together 28 stakeholders to finalize the prototype. Alpha testing of the paper and online BEFORE DA occurred with 17 participants. Participants found the BEFORE DA usable, acceptable, and most provided enthusiastic support for its use with premenopausal breast cancer patients facing a fertility decision. Participants also identified areas for improvement including clarifying content/messages and modifying the design/photos. The final BEFORE DA is a 32-page paper and mirrored online decision aid (https://fertilityaid.rethinkbreastcancer.com). The BEFORE DA includes information on fertility, fertility options before/after treatment, values clarification, question list, next steps, glossary and reference list, and tailored information on the cost of fertility preservation and additional resources by geographic location. Conclusion The BEFORE DA, designed in collaboration with stakeholders, is a new tool for premenopausal breast cancer patients and HCPs to assist with fertility discussions and decision-making. The BEFORE DA helps to fill the information gap as it is a tool that HCPs can refer patients to for supplementary information surrounding fertility.

Abstract Background Retrospective studies have shown adolescents and young adults (AYA) with acute lymphoblastic leukemia (ALL) have superior survival when treated in pediatric versus adult centers (locus of care; LOC). Several adult centers recently adopted pediatric protocols. Whether this has narrowed LOC disparities in real–world settings is unknown. Methods The IMPACT Cohort is an Ontario population–based cohort that captured demographic, disease and treatment (treatment protocol, chemotherapy doses) data for all 15‐21 year olds diagnosed with ALL 1992‐2011. Cancer outcomes were determined by chart abstraction and linkage to provincial healthcare databases. Treatment protocols were classified as pediatric‐ or adult‐based. We examined predictors of outcome, including LOC, protocol, disease biology, and time period. Results Of 271 patients, 152 (56%) received therapy at adult centers. 5‐year event‐free survival (EFS ± SE) among AYA at pediatric vs adult centers was 72% ± 4% vs 56% ± 4% (P = 0.03); 5‐year overall survival (OS) was 82% ± 4% vs 64% ± 4% (P

Abstract 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.

BackgroundThe traditional management of papillary thyroid cancer (PTC) is thyroidectomy (total or partial removal of the thyroid). Active surveillance (AS) may be considered as an alternative option for small, low risk PTC. AS involves close follow-up (including regularly scheduled clinical and radiological assessments), with the intention of intervening with surgery for disease progression or patient preference.MethodsThis is a protocol for a prospective, observational, long-term follow-up multi-centre Canadian cohort study. Consenting eligible adults with small, low risk PTC (< 2cm in maximal diameter, confined to the thyroid, and not immediately adjacent to critical structures in the neck) are offered the choice of AS or surgery for management of PTC. Patient participants are free to choose either option (AS or surgery) and the disease management course is thus not assigned by the investigators. Surgery is provided as usual care by a surgeon in an institution of the patient’s choice. Our primary objective is to determine the rate of ‘failure’ of disease management in respective AS and surgical arms as defined by: i) AS arm – surgery for progression of PTC, and ii) surgical arm - surgery or other treatment for disease persistence or progression after completing initial treatment. Secondary outcomes include long-term thyroid oncologic and treatment outcomes, as well as patient-reported outcomes.DiscussionThe results from this study will provide long-term clinical and patient reported outcome evidence regarding active surveillance or immediate surgery for management of small, low risk PTC. This will inform future clinical trials in disease management of small, low risk papillary thyroid cancer.Registration detailsThis prospective observational cohort study is registered on clinicaltrials.gov (NCT04624477), but it should not be considered a clinical trial as there is no assigned intervention and patients are free to choose either AS or surgery.

Abstract Background The risk of colorectal cancer (CRC) varies around the world and between females and males. We aimed to compare the risk of CRC among immigrants to Ontario, Canada, to its general population. Methods We used an exposure-control matched design. We identified persons in the Immigration, Refugees and Citizenship Canada Permanent Resident Database with first eligibility for the Ontario Health Insurance Plan between July 1, 1991 and June 30, 2008 at age 40 years or older, and matched five controls by year of birth and sex on the immigrant’s first eligibility date. We identified CRC from the Ontario Cancer Registry between the index date and December 31, 2014. All analyses were stratified by sex. We calculated crude and relative rates of CRC. We estimated risk of CRC over time by the Kaplan-Meier method and compared immigrants to controls in age and sex stratified strata using log-rank tests. We modeled the hazard of CRC using Cox proportional hazards regression, accounting for within-cluster correlation by a robust sandwich variance estimation approach, and assessed an interaction with time since eligibility. Results Among females, 1877 cases of CRC were observed among 209,843 immigrants, and 16,517 cases among 1,049,215 controls; the crude relative rate among female immigrants was 0.623. Among males, 1956 cases of CRC were observed among 191,792 immigrants and 18,329 cases among 958,960 controls; the crude relative rate among male immigrants was 0.582.. Comparing immigrants to controls in all age and sex stratified strata, the log rank test p = 75 years at index, where p = 0.01. The age-adjusted hazard ratio (HR) for CRC among female immigrants was 0.63 (95% CI 0.59, 0.67) during the first 10 years, and 0.66 (95% CI 0.59, 0.74) thereafter. Among male immigrants the age-adjusted HR = 0.55 (95% CI 0.52, 0.59) during the first 10 years and increased to 0.63 (95% CI 0.57, 0.71) thereafter. The adjusted HR > = 1 only among immigrants born in Europe and Central Asia. Conclusions The risk of CRC among immigrants to Ontario relative to controls varies by origin and over time since immigration.

Background. The goal of this study is to examine utilization of early repeat colonoscopy ≤ 6 months after an index procedure. Methods. We identified persons having repeat colonoscopy ≤ 6 months following outpatient colonoscopy without prior colonoscopy ≤ 5 years or prior diagnosis of colorectal cancer (CRC). We modeled repeat colonoscopy using a generalized estimating equation with an exchangeable correlation structure to account for clustering of patients by endoscopist. Results. The population included 334,663 persons, 7,892 (2.36%) of whom had an early repeat colonoscopy within 6 months. Overall, endoscopist prior year colonoscopy volume was inversely related to repeat ≤ 6 months. Repeat colonoscopy ≤ 6 months varied by the clinical setting of the index colonoscopy (adjusted OR = 1.41 (95% CI 1.29–1.55)) at nonhospital facilities compared to teaching or community hospitals. Among those who had polypectomy or biopsy, the adjusted OR for early repeat ≤ 6 months was elevated among those whose index colonoscopy was at a nonhospital facility (OR 1.44, 95% CI 1.30–1.60), compared to those at a teaching hospital or community hospital. Conclusions. Repeat colonoscopy ≤ 6 months after an index procedure is associated with the clinical setting of the index colonoscopy.

Introduction. The objectives of this systematic review were to evaluate the evidence for different CRC screening tests and to determine the most appropriate ages of initiation and cessation for CRC screening and the most appropriate screening intervals for selected CRC screening tests in people at average risk for CRC. Methods. Electronic databases were searched for studies that addressed the research objectives. Meta-analyses were conducted with clinically homogenous trials. A working group reviewed the evidence to develop conclusions. Results. Thirty RCTs and 29 observational studies were included. Flexible sigmoidoscopy (FS) prevented CRC and led to the largest reduction in CRC mortality with a smaller but significant reduction in CRC mortality with the use of guaiac fecal occult blood tests (gFOBTs). There was insufficient or low quality evidence to support the use of other screening tests, including colonoscopy, as well as changing the ages of initiation and cessation for CRC screening with gFOBTs in Ontario. Either annual or biennial screening using gFOBT reduces CRC-related mortality. Conclusion. The evidentiary base supports the use of FS or FOBT (either annual or biennial) to screen patients at average risk for CRC. This work will guide the development of the provincial CRC screening program.

Objectives There has been limited research on the acceptability of breast reconstruction (BR) to breast cancer patients. We performed interviews to explore breast cancer patients’ acceptability of BR.Design Qualitative study.Setting Recruitment from six Ontario hospitals across the province (Toronto, Ottawa, Hamilton, London, Thunder Bay and Windsor) as well as key breast cancer organisations between November 2017 and June 2018.Participants Women of any age with a diagnosis of breast cancer planning to undergo or having undergone a mastectomy with or without BR.Intervention Sixty-minute semi-structured interviews were analysed using qualitative descriptive methodology that draws on inductive thematic analysis.Outcome In the telephone interviews, participants discussed their experience with breast cancer and accessing BR, focusing on the acceptability of BR as a surgical option post-mastectomy.Results Of the 28 participants, 11 had undergone BR at the time of the interview, 5 at the time of mastectomy and 6 at a later date. Four inter-related themes were identified that reflected women’s evolving ideas about BR as they progressed through different stages of their disease and treatment. The themes we developed were: (1) cancer survival before BR, (2) the influence of physicians on BR acceptability, (3) patient’s shift to BR acceptance and (4) women’s need to justify BR. For many women, access to BR surgery became more salient over time, thus adding a temporal element to the existing access framework.Conclusion In our study, women’s access to BR was negatively influenced by the poor acceptability of this surgical procedure. The acceptability of BR was a complex process taking place over time, from the moment of breast cancer diagnosis to BR consideration. BR access may be improved through enhancing patient acceptability of BR. We suggest adapting the current access to care frameworks by further developing the concept of acceptability.