Evaluating Readability, Understandability, and Actionability of Online Printable Patient Education Materials for Cholesterol Management: A Systematic Review.

BACKGROUND: Dyslipidemia management is a cornerstone in cardiovascular disease prevention and relies heavily on patient adherence to lifestyle modifications and medications. Numerous cholesterol patient education materials are available online, but it remains unclear whether these resources are suitable for the majority of North American adults given the prevalence of low health literacy. This review aimed to (1) identify printable cholesterol patient education materials through an online search, and (2) evaluate the readability, understandability, and actionability of each resource to determine its utility in practice. METHODS AND RESULTS: We searched the MEDLINE database for peer-reviewed educational materials and the websites of Canadian and American national health organizations for gray literature. Readability was measured using the Flesch-Kincaid Grade Level, and scores between fifth- and sixth-grade reading levels were considered adequate. Understandability and actionability were scored using the Patient Education Materials Assessment Tool and categorized as superior (>80%), adequate (50%-70%), or inadequate (<50%). Our search yielded 91 results that were screened for eligibility. Among the 22 educational materials included in the study, 15 were identified through MEDLINE, and 7 were from websites. The readability across all materials averaged an 11th-grade reading level (Flesch-Kincaid Grade Level=11.9±2.59). The mean±SD understandability and actionability scores were 82.8±6.58% and 40.9±28.60%, respectively. CONCLUSIONS: The readability of online cholesterol patient education materials consistently exceeds the health literacy level of the average North American adult. Many resources also inadequately describe action items for individuals to self-manage their cholesterol, representing an implementation gap in cardiovascular disease prevention.

Our Data, Our Question: Public-Centric Approaches to Administrative Data Analysis.

There is growing recognition of the importance of patient, public and community engagement in health research, which has not been used widely in analyzing health administrative datasets. In Ontario, health data are stewarded by ICES, whose strategic decision making is guided by a diverse Public Advisory Council (PAC). In a first foray into publicly led projects, the ICES PAC undertook an analysis project on mental health and addiction health service use. Public members guided the project through all stages of research. This generated critical lessons for ICES on improving participation, collaboration and trust.

Sex-Based Differences in Severe Outcomes, Including Cardiovascular Hospitalization, in Adults With COVID-19 in Ontario, Canada.

Background: While men have experienced higher risks of SARS-CoV-2 infection compared to women, an analysis of sex differences by age in severe outcomes during the acute phase of infection is lacking. Objectives: The purpose of this study was to assess heterogeneity in severe outcome risks by age and sex by conducting a retrospective cohort study of community-dwelling adults in Ontario who tested positive for SARS-CoV-2 infection during the first 3 waves. Methods: Adjusted odds ratios were estimated using multilevel multivariable logistic regression models including an interaction term for age and sex. The primary outcome was a composite of severe outcomes (hospitalization for a cardiovascular (CV) event, intensive care unit admission, mechanical ventilation, or death) within 30 days. Results: Among 30,736, 199,132, and 186,131 adults who tested positive during the first 3 waves, 1,908 (6.2%), 5,437 (2.7%), and 5,653 (3.0%) experienced a severe outcome within 30 days. For all outcomes, the sex-specific risk depended on age (all P for interaction <0.05). Men with SARS-CoV-2 infection experienced a higher risk of outcomes than infected women of the same age, except for the risk of all-cause hospitalization being higher for young women than men (ages 18-45 years) during waves 2 and 3. The sex disparity in CV hospitalization across all ages either persisted or increased with each subsequent wave. Conclusions: To mitigate risks in subsequent waves, it is helpful to further understand the factors that contribute to the generally higher risks faced by men across all ages, and the persistent or increasing sex disparity in the risk of CV hospitalization.

Primary Care Clinical Volumes, Cholesterol Testing, and Cardiovascular Outcomes.

BACKGROUND: It is unknown whether the annual number of primary care physician (PCP) unique outpatient assessments, which we refer to as clinical volume, translates into better cardiovascular preventive care. We examined the relationship between PCP outpatient clinical volumes and cholesterol testing and major adverse cardiovascular event rates among guideline-recommended eligible patients. METHODS: This was a retrospective cohort study conducted as part of the Cardiovascular Health in Ambulatory Care Research Team (CANHEART) cohort, a population-based cohort of almost all adult residents of Ontario, Canada, followed from 2008 to 2012. For each clinical volume quintile, we compared cholesterol testing and major adverse cardiovascular events, defined as time to first event of cardiovascular death, nonfatal myocardial infarction, or nonfatal stroke. RESULTS: The 10,037 PCPs evaluated had an annualized median volume of 2303 clinical encounters (IQR 1292-3680). Among 4,740,380 patients, 84% underwent guideline-concordant cholesterol testing at least once over 5 years, ranging from 73% with the lowest clinical volume quintile physicians to 86% with the highest. After multivariable adjustment, there was a 10.5% relative increase in the probability of cholesterol testing for every doubling of clinical volumes (95% CI 9.7-11.4; P < 0.001). Patients treated by the lowest volume quintile physicians had the highest rate of major adverse cardiovascular outcomes (compared with the highest volume quintile physicians: adjusted HR 1.15, 95% CI 1.10-1.21; P < 0.001). CONCLUSIONS: Patients of physicians with the lowest clinical volumes received less frequent cholesterol testing and had the highest rate of incident cardiovascular events. Further research investigating the drivers of this relationship is warranted.

Eligibility and Implementation of Rivaroxaban for Secondary Prevention of Atherothrombosis in Clinical Practice-Insights From the CANHEART Study.

Background The COMPASS (Cardiovascular Outcomes for People Using Anticoagulation Strategies) trial decreased major adverse cardiovascular events with very low-dose rivaroxaban and aspirin in patients with coronary artery disease and peripheral artery disease. We examined the eligibility and potential real-world impact of this strategy on the COMPASS-eligible population. Methods and Results COMPASS eligibility criteria were applied to the CANHEART (Cardiovascular Health in Ambulatory Care Research Team) registry, a population-based cohort of Ontario adults. We compared 5-year major adverse cardiovascular events and major bleeding rates stratified by COMPASS eligibility and by clinical risk factors. We applied COMPASS trial rivaroxaban/aspirin arm hazard ratios to estimate the potential impact on the COMPASS-eligible cohort. Among 362 797 patients with coronary artery disease or peripheral artery disease, 38% were deemed eligible, 47% ineligible, and 15% indeterminate. Among eligible patients, a greater number of risk factors was associated with higher rates of cardiovascular outcomes, whereas bleeding rates increased minimally. Over 5 years, applying COMPASS treatment effects to eligible patients resulted in a 2.4% absolute risk reduction of major adverse cardiovascular events and a number needed to treat of 42, and a 1.3% absolute risk increase of major bleeding and number needed to harm (NNH) of 77. Those with at least 2 risk factors had a 3.0% absolute risk reduction of major adverse cardiovascular events (number needed to treat =34) and a 1.6% absolute risk increase of major bleeding (number needed to harm =61). Conclusions Implementation of very-low-dose rivaroxaban therapy would potentially impact ≈$$ \approx $$2 in 5 patients with atherosclerotic disease in Ontario. Eligible individuals with ≥$$ \ge $$2 comorbidities represent a high-risk subgroup that may derive the greatest benefit-to-risk ratio. Selection of patients with high-risk predisposing factors appears appropriate in routine practice.

Clinical risk, sociodemographic factors, and SARS-CoV-2 infection over time in Ontario, Canada.

We aimed to determine whether early public health interventions in 2020 mitigated the association of sociodemographic and clinical risk factors with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. We conducted a population-based cohort study of all adults in Ontario, Canada who underwent testing for SARS-CoV-2 through December 31, 2020. The outcome was laboratory-confirmed SARS-CoV-2 infection, determined by reverse transcription polymerase chain reaction testing. Adjusted odds ratios (ORs) were determined for sociodemographic and clinical risk factors before and after the first-wave peak of the pandemic to assess for changes in effect sizes. Among 3,167,753 community-dwelling individuals, 142,814 (4.5%) tested positive. The association between age and SARS-CoV-2 infection risk varied over time (P-interaction < 0.0001). Prior to the first-wave peak, SARS-CoV-2 infection increased with age whereas this association reversed thereafter. Risk factors that persisted included male sex, residing in lower income neighborhoods, residing in more racially/ethnically diverse communities, immigration to Canada, hypertension, and diabetes. While there was a reduction in infection rates after mid-April 2020, there was less impact in regions with higher racial/ethnic diversity. Immediately following the initial peak, individuals living in the most racially/ethnically diverse communities with 2, 3, or ≥ 4 risk factors had ORs of 1.89, 3.07, and 4.73-fold higher for SARS-CoV-2 infection compared to lower risk individuals in their community (all P < 0.0001). In the latter half of 2020, this disparity persisted with corresponding ORs of 1.66, 2.48, and 3.70-fold higher, respectively. In the least racially/ethnically diverse communities, there was little/no gradient in infection rates across risk strata. Further efforts are necessary to reduce the risk of SARS-CoV-2 infection among the highest risk individuals residing in the most racially/ethnically diverse communities.

A Clinical Decision Aid to Support Personalized Treatment Selection for Patients with Clinical T1 Renal Masses: Results from a Multi-institutional Competing-risks Analysis.

BACKGROUND: Personalized treatment for clinical T1 renal cortical masses (RCMs) should take into account competing risks related to tumor and patient characteristics. OBJECTIVE: To develop treatment-specific prediction models for cancer-specific mortality (CSM), other-cause mortality (OCM), and 90-d Clavien grade ≥3 complications across radical nephrectomy (RN), partial nephrectomy (PN), thermal ablation (TA), and active surveillance (AS). DESIGN, SETTING, AND PARTICIPANTS: Pretreatment clinical and radiological features were collected for consecutive adult patients treated with initial RN, PN, TA, or AS for RCMs at four high-volume referral centers (2000-2019). OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Prediction models used competing-risks regression for CSM and OCM and logistic regression for 90-d Clavien grade ≥3 complications. Performance was assessed using bootstrap validation. RESULTS AND LIMITATIONS: The cohort comprised 5300 patients treated with RN (n = 1277), PN (n = 2967), TA (n = 476), or AS (n = 580). Over median follow-up of 5.2 yr (interquartile range 2.5-8.7), there were 117 CSM, 607 OCM, and 198 complication events. The C index for the predictive models was 0.80 for CSM, 0.77 for OCM, and 0.64 for complications. Predictions from the fitted models are provided in an online calculator (https://small-renal-mass-risk-calculator.fredhutch.org). To illustrate, a hypothetical 74-yr-old male with a 4.5-cm RCM, body mass index of 32 kg/m2, estimated glomerular filtration rate of 50 ml/min, Eastern Cooperative Oncology Group performance status of 3, and Charlson comorbidity index of 3 has predicted 5-yr CSM of 2.9-5.6% across treatments, but 5-yr OCM of 29% and risk of 90-d Clavien grade 3-5 complications of 1.9% for RN, 5.8% for PN, and 3.6% for TA. Limitations include selection bias, heterogeneity in practice across treatment sites and the study time period, and lack of control for surgeon/hospital volume. CONCLUSIONS: We present a risk calculator incorporating pretreatment features to estimate treatment-specific competing risks of mortality and complications for use during shared decision-making and personalized treatment selection for RCMs. PATIENT SUMMARY: We present a risk calculator that generates personalized estimates of the risks of death from cancer or other causes and of complications for surgical, ablation, and surveillance treatment options for patients with stage 1 kidney tumors.

Development and validation of a model to categorize cardiovascular cause of death using health administrative data.

Study objective: Develop and evaluate a model that uses health administrative data to categorize cardiovascular (CV) cause of death (COD). Design: Population-based cohort. Setting: Ontario, Canada. Participants: Decedents ≥ 40 years with known COD between 2008 and 2015 in the CANHEART cohort, split into derivation (2008 to 2012; n = 363,778) and validation (2013 to 2015; n = 239,672) cohorts. Main outcome measures: Model performance. COD was categorized as CV or non-CV with ICD-10 codes as the gold standard. We developed a logistic regression model that uses routinely collected healthcare administrative to categorize CV versus non-CV COD. We assessed model discrimination and calibration in the validation cohort. Results: The strongest predictors for CV COD were history of stroke, history of myocardial infarction, history of heart failure, and CV hospitalization one month before death. In the validation cohort, the c-statistic was 0.80, the sensitivity 0.75 (95 % CI 0.74 to 0.75) and the specificity 0.71 (95 % CI 0.70 to 0.71). In the primary prevention validation sub-cohort, the c-statistic was 0.81, the sensitivity 0.71 (95 % CI 0.70 to 0.71) and the specificity 0.75 (95 % CI 0.75 to 0.75) while in the secondary prevention sub-cohort the c-statistic was 0.74, the sensitivity 0.81 (95 % CI 0.81 to 0.82) and the specificity 0.54 (95 % CI 0.53 to 0.54). Conclusion: Modelling approaches using health administrative data show potential in categorizing CV COD, though further work is necessary before this approach is employed in clinical studies.

A feasibility study for CODE-MI: High-sensitivity cardiac troponin-Optimizing the diagnosis of acute myocardial infarction/injury in women.

BACKGROUND: CODE-MI is a pan-Canadian, multicentre, stepped-wedge, cluster randomized trial that evaluates the impact of using the female-specific 99th percentile threshold for high-sensitivity cardiac troponin (hs-cTn) on the diagnosis, treatment and outcomes of women presenting to the emergency department (ED) with symptoms suggestive for myocardial ischemia. A feasibility study was conducted to estimate the number of eligible patients, the rate of the study's primary outcome under control conditions, and the statistical power to detect a clinically important difference in the primary outcome. METHODS: Using linked administrative data from 11 hospitals in Ontario, Canada, from October 2014 to September 2017, the following estimates were obtained: number of women presenting to the ED with symptoms suggestive of myocardial ischemia and a 24-hour peak hs-cTn value within the female-specific and overall thresholds (ie, primary cohort); the rate of the 1-year composite outcome of all-cause mortality, re-admission for nonfatal myocardial infarction, incident heart failure, or emergent/urgent coronary revascularization. Study power was evaluated via simulations. RESULTS: Overall, 2,073,849 ED visits were assessed. Among women, chest pain (with or without cardiac features) and shortness of breath were the most common complaints associated with a diagnosis of acute coronary syndrome. An estimated 7.7% of women with these complaints are eligible for inclusion in the primary cohort. The rate of the 1-year outcome in the primary cohort varied significantly across hospitals with a median rate of 12.2% (95%CI: 7.9%-17.7%). With 30 hospitals, randomized at 5-month intervals in 5 steps, approximately 19,600 women are expected to be included in CODE-MI, resulting in >82% power to detect a 20% decrease in the odds of the primary outcome at a 0.05 significance level. CONCLUSIONS: This feasibility study greatly enhanced the design of CODE-MI, allowed accurate evaluation of the study power, and demonstrated the strength of using linked administrative health data to guide the design of pragmatic clinical trials.

Making Informed CHOICES: The Launch of a "Big Data" Pragmatic Trial to Improve Cholesterol Management and Prevent Heart Disease in Ontario.

Cholesterol-lowering statin medications are a safe and effective therapy to lower cholesterol and reduce the risk of cardiovascular events. Yet physician prescribing patterns and patient adherence remain suboptimal in Canada and the United States, often due to pervasive misconceptions. The Community Heart Outcomes Improvement and Cholesterol Education Study (CHOICES) is a pragmatic, registry-based, cluster randomized controlled trial that aims to improve cholesterol management through appropriate statin use in adults and to ultimately reduce cardiovascular events in high-risk communities across Ontario. The trial uses an innovative, multicomponent intervention and implementation approach that includes audit and feedback reports for family physicians and educational materials and tools for patients.

Nursing interventions for adults following a mental health crisis: A systematic review guided by trauma-informed principles.

There exists a growing need for health and service providers to respond to persons in a manner that recognizes the prevalence and impact of trauma in individuals and prevent inadvertent re-traumatization in the routine process of care. The experience of mental health crisis in of itself can have traumatic and impactful effects on individuals. Trauma-informed approaches to care offer a framework to provide crisis intervention responses that are based on the acknowledgement of the prevalence and impact of trauma and define trauma not by the event per se, but by the impact of an experience of trauma. The integration of trauma-informed principles in the context of crisis intervention is a current practice gap. In order to inform a portion of a best-practice guideline for registered nurses and the interprofessional team, a systematic literature review was conducted to primarily identify nursing interventions within four weeks of a mental health crisis, with a secondary focus on identifying particular interventions that included trauma-informed principles. The systematic review yielded 21 quantitative and qualitative studies related to nursing interventions for mental health crisis, 10 of which referred to one or more principles of trauma-informed approaches. There was a lack of studies on nursing interventions explicitly linked to implementation of trauma-informed principles, highlighting future research needs and focused efforts to integrate trauma-informed principles into crisis intervention practices.

Effectiveness of Interventions Aimed at Increasing Statin-Prescribing Rates in Primary Cardiovascular Disease Prevention: A Systematic Review of Randomized Clinical Trials.

Importance: Statins are a cornerstone medication in cardiovascular disease prevention, but their use in clinical practice remains suboptimal, with less than half of people who are indicated for statins actually taking the medication. Objective: To perform a systematic review and synthesis of the literature on patient-oriented and physician-oriented interventions aimed at increasing statin-prescribing rates in adults without a history of cardiovascular disease. Evidence Review: PubMed, Embase, and the Cochrane Library were searched for randomized clinical trials published between January 2000 and May 2019. Data abstraction was performed using the Cochrane Public Health Review Group's data collection template, and a narrative synthesis of study results was conducted. The risk of bias in each study was qualitatively assessed, and a funnel plot was created to further evaluate the risk of publication bias. Findings: Among 7948 citations and 128 full-text articles reviewed, 20 studies (of 109 807 patients) were included in the review. Eight trials reported a statistically significant increases in statin-prescribing rates. Among the effective trials, absolute effect sizes ranged from 4.2% (95% CI, 2.2%-6.4%) to 23% (95% CI, 7.3%-38.9%) and odds ratios from 1.29 (95% CI, 1.01-1.66) to 11.8 (95% CI, 8.8-15.9). Patient-education initiatives were the most commonly effective intervention, with 4 of 7 trials indicating increases in statin-prescribing rates. Two trials combined electronic decision-support tools with audit-and-feedback systems, both of which were effective overall. Physician-education programs without dynamic input regarding patient risk or updated treatment recommendations were generally found to be less effective. Conclusions and Relevance: While heterogeneous in their interventions and outcomes, a number of interventions have demonstrated increases in statin-prescribing rates, with patient-education initiatives demonstrating more promising results than those focused on physician education alone. As opposed to more education about generic recommendations, tailored patient-focused and physician-focused interventions were more effective when they provided personalized cardiovascular risk information, dynamic decision-support tools, or audit-and-feedback reports in a multicomponent program. There are a number of modestly successful approaches to implement increases in rates of statin prescribing, a proven yet underused cardiovascular disease prevention class of therapy.

Nonpharmacological approaches for behavioural and psychological symptoms of dementia in older adults: A systematic review of reviews.

AIMS AND OBJECTIVES: To review the evidence on nonpharmacological approaches to care for behavioural and psychological symptoms of dementia in older adults. BACKGROUND: Dementia is increasing in worldwide prevalence and can have severe and life-altering impacts on older adults. Behavioural and psychological symptoms of dementia can occur as a result of unmet needs and are distressing for family and caregivers. Many reviews have examined specific approaches to behaviours, but few have compared interventions for effectiveness and applicability across settings. DESIGN: Systematic review of reviews. METHODS: The search was limited to reviews that were published between October 2009-April/May 2015. Seven databases were searched, and reviews with a focus on nonpharmacological approaches to behaviours in older adults with dementia were included. All reviews were independently screened by two reviewers, quality appraised and data extracted. Results are reported through narrative synthesis. RESULTS: There were 18 international reviews that met inclusion criteria describing individual therapies, targeted interventions and organisational interventions. The organisational interventions of care planning using a consultation or dementia mapping process demonstrated modest benefits. The most conclusive evidence supported individual, sensory-focused interventions such as music therapy, interventions targeting pain, person-centred approaches and education for family caregivers. CONCLUSIONS: Although there remains a paucity of high-quality research in this area, the existing evidence indicates that behavioural and psychological symptoms of dementia require a range of nonpharmacologic sensory-focused approaches that are tailored to the individual. Further research is needed to determine the interventions best suited for specific behaviours and contexts, particularly inappropriate sexual behaviours. RELEVANCE TO CLINICAL PRACTICE: There is a need for nurses to be informed of best practices in order to effectively plan appropriate interventions to address behaviours in older adults with dementia. Care planning and tailored, sensory-focused, nonpharmacologic approaches are safe and effective options for nurses to consider in practice.

Approaches to health-care provider education and professional development in perinatal depression: a systematic review.

BACKGROUND: Perinatal depression is the most common mental illness experienced by pregnant and postpartum women, yet it is often under-detected and under-treated. Some researchers suggest this may be partly influenced by a lack of education and professional development on perinatal depression among health-care providers, which can negatively affect care and contribute to stigmatization of women experiencing altered mood. Therefore, the aim of this systematic review is to provide a synthesis of educational and professional development needs and strategies for health-care providers in perinatal depression. METHODS: A systematic search of the literature was conducted in seven academic health databases using selected keywords. The search was limited to primary studies and reviews published in English between January 2006 and May/June 2015, with a focus on perinatal depression education and professional development for health-care providers. Studies were screened for inclusion by two reviewers and tie-broken by a third. Studies that met inclusion criteria were quality appraised and data extracted. Results from the studies are reported through narrative synthesis. RESULTS: Two thousand one hundred five studies were returned from the search, with 1790 remaining after duplicate removal. Ultimately, 12 studies of moderate and weak quality met inclusion criteria. The studies encompassed quantitative (n = 11) and qualitative (n = 1) designs, none of which were reviews, and addressed educational needs identified by health-care providers (n = 5) and strategies for professional development in perinatal mental health (n = 7). Consistently, providers identified a lack of formal education in perinatal mental health and the need for further professional development. Although the professional development interventions were diverse, the majority focused on promoting identification of perinatal depression and demonstrated modest effectiveness in improving various outcomes. CONCLUSIONS: This systematic review reveals a lack of strong research in multi-disciplinary, sector, site, and modal approaches to education and professional development for providers to identify and care for women at risk for, or experiencing, depression. To ensure optimal health outcomes, further research comparing diverse educational and professional development approaches is needed to identify the most effective strategies and consistently meet the needs of health-care providers. TRIAL REGISTRATION: A protocol for this systematic review was registered on PROSPERO (Protocol number: CRD42015023701 ), June 21, 2015.

Natural History of Renal Angiomyolipoma (AML): Most Patients with Large AMLs >4cm Can Be Offered Active Surveillance as an Initial Management Strategy.

BACKGROUND: The natural history of renal angiomyolipoma (AML) is unknown. Treatment recommendations are based on smaller case series, with selection bias towards symptomatic patients. OBJECTIVE: To define the natural history of renal AML, including growth rates, size, and clinical presentation. DESIGN, SETTING, AND PARTICIPANTS: We used a unique radiology data-mining system (Montage; Montage Healthcare Systems, Philadelphia, PA, USA) to retrospectively review the radiology database in an academic health centre between 2002 and 2013 to identify all renal AMLs. Of 2741 patients identified, 447 with 582 AMLs had three or more imaging studies suitable for analysis. INTERVENTION: Angioembolisation, surgery, radiofrequency ablation, and mammalian target of rapamycin inhibitors. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: The primary end point was the growth rate of untreated AMLs. We used a linear mixed-effects model to determine change in growth rate over time. We evaluated the association among growth rate, size, and patient factors as well as interventions. RESULTS AND LIMITATIONS: The majority of untreated AMLs (>92%) had not grown at a median follow-up of 43 mo, with no difference in growth rates between AMLs ≤4 and >4cm. Most AMLs occurred in female participants (80%) and were asymptomatic (91%). Tuberous sclerosis complex (TSC) was confirmed in 3.8% (n=17) and presented at an earlier age. Median size was 1cm but was significantly larger for TSC (5.5cm; p<0.001). Interventions were performed in 5.6% of patients. Limitations of our study include the retrospective design, selection against fat-poor AMLs, and lack of histology. CONCLUSIONS: This large, single-institution series on AMLs confirms that lesions >4cm do not require early intervention based on size alone. The vast majority are sporadic, asymptomatic, and initially harmless, with a negligible growth rate. Our findings support a policy of initial active surveillance for all asymptomatic AMLs. PATIENT SUMMARY: We evaluated the natural history and growth rates of renal AMLs. We found no difference in growth rates between AMLs >4 and ≤4cm. Initial AS appears to be a safe management option.

The Need for Survivorship Care in Genitourinary Cancers: Considerations from SUO and LUGPA.

INTRODUCTION: A quarter of American cancer survivors have genitourinary malignancies that are largely managed by urologists. We explored urologist perceptions about survivorship care for genitourinary malignancies. METHODS: A total of 701 SUO (Society of Urologic Oncology) and 1,746 LUGPA (Large Urology Group Practice Association) members were invited to complete a web based survey composed of 5 domains, including 1) demographics, 2) current survivorship care practices, 3) perceived barriers, 4) accessibility to survivorship resources and 5) perceptions of advocacy groups. RESULTS: Of 191 respondents 137 (72%) had no training in survivorship care. Of the 174 respondents 129 (74%) practiced shared care models while 45 (26%) preferred pure specialized followup care. Only 39 of 129 respondents (30%) with a shared care model always provided a written care plan. These plans infrequently included information on lifestyle modifications and educational resources. Routine patient referral to advocacy organizations was highest for prostate cancer at 40% followed by bladder, testicular and kidney cancers at 17%, 10% and 8%, respectively. Lack of time/resources and practice guidelines were considered the 2 most important barriers to survivorship care by 31% and 30% of participants, respectively. Web based information on advocacy groups and best practice guidelines were selected as the most important initiatives to promote survivorship care. CONCLUSIONS: Despite the low response rate this study highlights important practice gaps in survivorship care for patients with genitourinary malignancies. In collaboration with advocacy organizations professional societies should initiate programs to better educate and train their members in survivorship care guidelines and consensus best practices.

Practice patterns and perceptions of survivorship care in Canadian genitourinary oncology: A multidisciplinary perspective.

INTRODUCTION: There is little knowledge of survivorship care specific to genitourinary (GU) cancers. To improve care delivery to this patient population, we need to clearly define physician perceptions of survivorship care. We therefore conducted a study to determine the challenges to GU cancer survivorship care in Canada. METHODS: A web-based questionnaire was e-mailed to physicians treating GU cancers in Canada, including urologists, radiation oncologists, and medical oncologists. Five domains were assessed: demography, current post-cancer treatment care, perspectives on barriers to survivorship care, accessibility to survivorship resources, and perspectives about advocacy groups. RESULTS: There were 306 responses, with 260 eligible for study. A total of 82% of physicians involve primary care practitioners (PCPs) at some point in survivorship care. Most physicians provide some form of written follow-up plan to PCPs. However, only 25% provided lifestyle recommendations and 53% included persistent and late effects of therapy. Lack of time or resources dedicated to survivorship care was the most commonly reported barrier. There was variation in accessibility to survivorship support programs among different subspecialties and regions. Advocacy groups generally were underutilized, particularly in testis cancer. Low response rate and the potential response bias are the main limitations of this survey. CONCLUSION: To our knowledge this is the first study to address the challenges of GU cancer survivorship care in Canada. The barriers and accessibility of survivorship care quoted in this survey may be used to improve care for this group of patients. Underutilization of advocacy groups may stimulate the advocacy groups and institutions to address its causes and solutions.

Fostering partnerships in survivorship care: report of the 2011 Canadian genitourinary cancers survivorship conference.

PURPOSE: New models of survivorship care are required to address the needs of genitourinary (GU) cancer survivors. Current approaches do not effectively engage cancer survivors or advocacy groups. A group of clinicians in collaboration with the Canadian Urologic Association held a forum for GU cancer survivors, advocacy groups, and health professionals to explore ways to collaboratively enhance survivorship care. METHODS: Participants attended a 2-day conference that included presentations, breakout groups, and a postconference survey. Discussions by breakout groups were recorded and analyzed alongside open-ended survey responses for common themes. Basic statistics were calculated. RESULTS: Conference participants (n = 42) included 18 cancer survivors/caregivers, 21 health professionals, and 3 researchers representing bladder, kidney, prostate, and testis cancer groups. Breakout group discussions and responses to the postconference survey (83.3 % response rate) showed strong support for greater collaboration among all parties. Strategies to facilitate collaboration reflected a need to: (1) raise awareness of the shared and unique needs of GU cancer survivors and the expertise of cancer advocacy groups, (2) facilitate communication and collaborative opportunities among clinicians/researchers and cancer survivors/advocacy groups, (3) facilitate collaborative programming and fund-raising among GU advocacy groups, and (4) synthesize and facilitate access to GU cancer survivorship resources and services. CONCLUSIONS: There is strong support for formal collaboration to enhance survivorship care among a critical mass of GU cancer survivors, advocacy groups, clinicians, and researchers. Responsibility for collaboration lies with all stakeholder groups. Strategies to foster such partnerships should employ integrated knowledge translation approaches that actively engage all parties throughout the entire research to practice process. IMPLICATIONS FOR CANCER SURVIVORS: Successful partnerships between cancer survivors, advocacy groups, clinicians, and researchers require familiarity with each other's expertise, along with sufficient resources and organizational structures. GU survivorship advocacy groups need to work more closely together to ensure a strong, unified voice when interacting with clinicians and researchers.