Developing an educational resource for gynecological cancer survivors and their caregivers: A methods and experience paper.

Building upon the need for greater education, identified by gynecological cancer survivors and their caregivers, the objective of this paper is to describe our patient-clinician-researcher partnership to develop an evidence- and experiential-based educational resource. We engaged in five phases using multiple research methods: 1) assembling the essential expertise, 2) reviewing the literature, 3) drafting the resource, 4) testing the resource, and 5) disseminating the resource. Our diverse partnership provided expertise toward multiple research methods that produced results useful for each successive phase. This combination - a diverse partnership and multiple research methods - resulted in a useful resource to fulfill a gap identified by knowledge users. The combined features described in our paper fill a procedural gap for clinicians and researchers intending to develop educational resources that are empirically and experientially founded.

What do cancer survivors believe caused their cancer? A secondary analysis of cross-sectional survey data.

PURPOSE: Given that risk reduction and healthy lifestyles can prevent 4 in 10 cancers, it is important to understand what survivors believe caused their cancer to inform educational initiatives. METHODS: In this secondary analysis, we analyzed cancer survivor responses on the Causes Subscale of the Revised Illness Perception Questionnaire, which lists 18 possible causes of illness and a free text question. We used descriptive statistics to determine cancer survivors' agreement with the listed causes and conducted separate partial proportional odds models for the top three causes to examine their associations with sociodemographic and clinical characteristics. Content analysis was used to examine free text responses. RESULTS: Of the 1,001 participants, most identified as Caucasian (n = 764, 77%), female (n = 845, 85%), and were diagnosed with breast cancer (n = 656, 66%). The most commonly believed causes of cancer were: stress or worry (n = 498, 51%), pollution in the environment (n = 471, 48%), and chance or bad luck (n = 412, 42%). The associations of sociodemographic and clinical variables varied across the models. Free text responses indicated that hereditary and genetic causes (n = 223, 22.3%) followed by trauma and stress (n = 218, 21.8%) and bad luck or chance (n = 79, 7.9%) were the most important causes of cancer. CONCLUSIONS: Study results illuminate cancer survivors' beliefs about varying causes of their cancer diagnosis and identify characteristics of survivors who are more likely to believe certain factors caused their cancer. Results can be used to plan cancer education and risk-reduction campaigns and highlight for whom such initiatives would be most suitable.

Measuring prognostic awareness in patients with advanced cancer: a scoping review and interpretive synthesis of the impact of hope.

BACKGROUND: Assessment of prognostic awareness (PA) in patients with advanced cancer is challenging because patient responses often indicate their hopes. The objectives of this scoping review were to summarize studies that measured PA in patients with advanced cancer and to synthesize data about how PA was measured and whether hope was incorporated into the measurement. METHODS: MEDLINE and Embase databases were searched from inception to December 14, 2021. Data regarding the impact of hope on assessment of PA were extracted when studies reported on patients' beliefs about prognosis and patients' beliefs about their doctor's opinion about prognosis. An interpretive synthesis approach was used to analyze the data and to generate a theory regarding the incorporation of hope into the assessment of PA. RESULTS: In total, 52 studies representing 23 766 patients were included. Most were conducted in high-income countries and measured PA based on the goal of treatment (curable vs incurable). Five studies incorporated hope into the assessment of PA and reported that among patients who responded that their treatment goal was a cure, an average of 30% also acknowledged that their doctors were treating them with palliative intent. Interpretive synthesis of the evidence generated a trinary conceptualization of PA patients who are aware and accepting of their prognosis; aware and not accepting; and truly unaware. Each of these groups will benefit from different types of interventions to support their evolving PA. CONCLUSION: The trinary conceptualization of PA may promote understanding of the impact of hope in the assessment of PA and guide future research.

Using simulation to enhance primary care sexual health services for breast cancer survivors: a feasibility study.

PURPOSE: To evaluate the impact of a virtual simulation game (VSG) to improve primary care sexual health services for breast cancer survivors. METHODS: We developed a VSG to help primary care providers (PCPs) address sexual health disturbances among breast cancer survivors. We used a pretest-posttest design with a series of validated tools to assess the feasibility and perceived impact of the  VGS, including an open-ended question about participants' perceptions. Quantitative data was analyzed using descriptive and inferential statistics and qualitative data through an inductive content analysis approach. RESULTS: Of the 60 participants, the majority were nurse practitioner students (n = 26; 43.3%), female (n = 48; 80%), and worked full-time (n = 35; 58.3%). Participants perceived the VSG as feasible and potentially effective. The intervention elicited an improvement in PCPs' perception of knowledge between pretest and posttest surveys (z = - 1.998, p = 0.046). Professional background and previous exposure to sexual health training were predictors of knowledge perception. Participants described the intervention as an engaging educational strategy where they felt safe to make mistakes and learn from that. CONCLUSIONS: VSGs can be a potentially effective educational approach for PCPs. Our findings indicate that despite being an engaging interactive strategy, VSG interventions should be tailored for each professional group. IMPLICATIONS FOR CANCER SURVIVORS: This intervention has potential to improve the knowledge and practice of PCPs related to breast cancer follow-up care to support comprehensive care for survivors, resulting in a better quality of life and patient outcomes.

Patient quality of life and caregiver experiences in ovarian cancer: How are they related?

PURPOSE: Patients with ovarian cancer and their spousal caregivers report similarities in health-related quality of life (HRQoL) and experiences throughout the cancer process. Previous research has reflected these shared experiences, demonstrating caregivers' capacity to accurately rate their patient-partner's HRQoL as a proxy. In response, this study examines associations between caregivers' perceptions of their patient-partner's HRQoL and their own caregiving responsibilities, consequences to well-being, and desired assistance from the healthcare system. This study will be beneficial when developing supports to assist caregivers throughout the cancer journey. METHODS: Using a cross-sectional survey design, spousal caregivers (N = 82) of patients with ovarian cancer completed measures on perceived patient HRQoL and caregiver experiences. Correlation analyses determined medical and sociodemographic covariates. A multivariate multiple regression was conducted using four proxy HRQoL functioning subscales and three factors of reported experiences as caregivers in cancer. Post-hoc univariate regression analyses were run on significant factors to assess the associations that exist. RESULTS: Caregiver-perceived patient physical functioning was significantly associated with more caregiving tasks after controlling for education, age, and stage of ovarian cancer, but no other HRQoL functioning scale (i.e., role, emotional, social) was associated with caregiver experiences. CONCLUSION: The study provides a unique perspective into the caregiver experience by attending to interpersonal factors in relation to caregiver experiences. Results may be able to guide interventions aimed at supporting caregivers through the cancer process by offering more assistance with tasks as their partner's physical condition worsens.

Patients' attitudes and preferences toward delayed disease progression in the absence of improved survival.

BACKGROUND: Cancer patients' attitudes toward progression-free survival (PFS) gains offered by treatment are not well understood, particularly in the absence of overall survival (OS) gains. The objectives were to describe patients' willingness to accept treatment that offers PFS gains without OS gains, to compare these findings with treatments offering OS gains, and to qualitatively summarize patients' reasons for their preferences. METHODS: A multicenter, cross-sectional, convergent mixed-methods study design recruited patients who had received at least 3 months of systemic therapy for incurable solid tumors. A treatment trade-off exercise determined the gains in imaging PFS that patients require to prefer additional systemic treatment for a scenario of a newly diagnosed, asymptomatic, incurable abdominal tumor. A qualitative, descriptive, thematic analysis explored factors influencing patients' decisions, and a narrative method integrated the quantitative and qualitative findings. RESULTS: In total, 100 patients participated (63% were older than 60 years of age). If additional treatment with added toxicity offered no OS advantage, 17% would prefer it for no PFS benefit; 26% for some PFS benefit (range, 3-9 months), whereas 51% would decline it regardless of PFS benefit. Similarly, 71% preferred additional treatment offering a 6-month OS advantage dependent on described toxicity levels (P = .03). A spectrum of reasons for these preferences reflected the complexity of participants' attitudes and values. CONCLUSIONS: Prolongation of time to progression was not universally valued. Most patients did not prefer treatments that negatively affect quality of life for PFS gains alone. Implications for individual decision making, policy, and trials research are discussed.

Identifying the Professional Development Needs Among Early Career Doctorally Prepared Oncology Professionals.

This study aimed to identify the professional development needs of early career doctorally prepared professionals in psychosocial oncology. We used a cross-sectional descriptive survey design to assess professionally related skills deemed most important to participants' academic excellence and promotion, skills they felt most and least confident to engage in, and those they were most interested to learn more about. Seventeen participants completed the survey and were, on average, 39.3 years of age (range 29-55 years) and had completed doctoral or post-doctoral training 3.1 years previously (range 0-5 years). Participants identified seeking external funding as not only the most important skill to achieve their academic excellence and promotion, but also as the skill they felt least confident to engage in. They felt most confident to engage in career planning and getting published and were most interested to learn more about how to negotiate a career/position. Participants also expressed interest in having access to a forum wherein they could collaborate with others and receive mentorship from expert oncology professionals with doctoral degrees. The findings from this study point to the need for professional development opportunities for oncology professionals before and after they complete their doctoral or post-doctoral training. Study participants' perspectives offer insights about topics that may be enhanced in doctoral and post-doctoral mentorship programs.

"How to start that conversation?": Experiences of developing a virtual simulation about sexual health care for breast cancer survivors.

Virtual simulation (VS) is an innovative and engaging knowledge translation strategy that can improve healthcare providers' knowledge and skills. However, there is no known literature published related to the use of simulation to improve cancer survivorship care. In this paper, we describe our experience of developing a VS to educate primary healthcare professionals about sexual health disturbances among breast cancer survivors. Based on literature in other contexts, this VS may help increase health professionals' knowledge and skills needed to assist breast cancer survivors with sexual health concerns. Our VS development experience can be used to encourage and guide other researchers planning to develop similar interventions in the future.

Identifying the effect of inherited bleeding disorders on the development of postpartum hemorrhage: a population-based, retrospective cohort study.

Background: Women with inherited bleeding disorders (IBDs) are at an increased risk of postpartum hemorrhage (PPH). However, the impact of other maternal predelivery risk factors, including anemia, on the association between IBD and maternal bleeding remains poorly understood. Additionally, studies examining potential pathways linking IBD and PPH are limited. Objectives: We aimed to determine the risk of PPH associated with IBD. Methods: A retrospective cohort study was conducted using data held within ICES (formerly the Institute for Clinical Evaluative Sciences). Women with an in-hospital, live, or stillborn delivery between January 2014 and December 2019 were included. Poisson regression with robust error variance was used to determine the risk (RR) and 95% CIs of PPH among women with or without an IBD diagnosis. Models were stratified for primiparous and multiparous women. Results: Among the total population of 601,773 women, 29,661 (4.93%) experienced PPH. Multivariate models demonstrated that IBD was an independent risk factor for PPH among both the total cohort (adjusted RR [aRR] = 1.26; 95% CI: 1.08, 1.46) and primiparous women (aRR = 1.36; 95% CI: 1.12, 1.66). Among multiparous women, prior PPH was associated with an increased risk of PPH (aRR = 8.65; 95% CI: 8.32, 8.99), whereas IBD had no effect (aRR = 1.1; 95% CI: 0.86, 1.4). Predelivery anemia, placental conditions, multifetal gestation, and induction of labor were associated with increased PPH risk among all cohorts. Conclusions: IBD significantly increases the risk of PPH. The management of delivery should be based on individualized assessment of risk factors to ensure optimal maternal outcomes.

Media coverage of cancer therapeutics: A review of literature.

BACKGROUND: Information and stories about cancer treatment are increasingly available to patients and the general public through lay media, websites, blogs and social media. While these resources may be helpful to supplement information provided during physician-patient discussions, there is growing concern about the extent to which media reports accurately reflect advances in cancer care. This review aimed to understand the landscape of published research which has described media coverage of cancer treatments. METHODS: This literature review included peer-reviewed primary research articles that reported how cancer treatments are portrayed in the lay media. A structured literature search of Medline, EMBASE and Google Scholar was performed. Potentially eligible articles were reviewed by three authors for inclusion. Three reviewers, each independently reviewed eligible studies; discrepancies were resolved by consensus. RESULTS: Fourteen studies were included. The content of the eligible studies reflected two thematic categories: articles that reviewed specific drugs/cancer treatment (n = 7) and articles that described media coverage of cancer treatment in general terms (n = 7). Key findings include the media's frequent and unfounded use of superlatives and hype for new cancer treatments. Parallel to this, media reports over-emphasize potential treatment benefits and do not present a balanced view of risks of side effects, cost, and death. At a broad level, there is emerging evidence that media reporting of cancer treatments may directly impact patient care and policy-making. CONCLUSIONS: This review identifies problems in current media reports of new cancer advances - especially with undue use of superlatives and hype. Given the frequency with which patients access this information and the potential for it to influence policy, there is a need for additional research in this space in addition to educational interventions with health journalists. The oncology community - scientists and clinicians - must ensure that we are not contributing to these problems.

Experience-based design: Empowering individuals while they wait for interprofessional chronic pain care.

OBJECTIVES: Chronic pain is highly prevalent and a leading cause of disability. Long wait times for interprofessional care provide an opportunity to introduce web-based interventions that improve psychosocial function and patients' readiness and ability to manage their condition. Here we describe the process of partnering with people with lived experience (PWLE) to develop an online self-management program enhanced by motivational interviewing. We also report the multiphase usability testing of the program. METHODS: PWLE were included in all aspects of this project from program inception to content creation, module development, usability testing, and knowledge dissemination. Phase 1 included the development of the interactive, web-based modules. This process involved weekly meetings and asynchronous content creation with a core team of interprofessional pain experts, researchers, and PWLE. Phase 2 included usability testing by our PWLE and clinical expert advisory. Phase 3 included survey-based usability testing with a sample of 10 PWLE. RESULTS: We created a chronic pain & motivational empowerment program includes a series of eight interactive educational web-based modules. Topics included: setting expectations, chronic pain explained, biopsychosocial factors, empowered management, self-awareness & compassion & acceptance, values, goal setting, and communication. The program is accompanied by a reflection journal and can be enhanced by one-on-one coaching sessions using a motivational interviewing approach. Phase two usability testing resulted in numerous content changes and the addition of accessibility features. Phase 3 usability testing with PWLE found the program highly accessible and easy to use. CONCLUSIONS: The engagement of our PWLE team member and advisors made the online program more relevant, sensitive and helpful to the needs of people with pain. PRACTICAL VALUE: This PWLE-centric project sets the foundation for future work to examine the feasibility and effectiveness of the program for supporting individuals with chronic pain self-manage.

Coping Strategies Used by Older Cancer Survivors During the COVID-19 Pandemic: A Longitudinal Qualitative Study.

Objectives: The objective of this study is to longitudinally examine the coping strategies used by older cancer survivors (≥60 years of age) during COVID-19. Methods: An interpretive descriptive approach was used to collect and analyse qualitative data collected via 1:1 telephone interviews at three timepoints: June/July 2020, January 2021, and March 2021. Main Findings: Coping strategies used by older adults reflected the resources available to them, and their agency in self-triaging and deciding on resources to support their coping. These decisions were impacted by pandemic-imposed restrictions and necessitated readjustment over time. Three themes were developed to describe coping strategies (including any changes): adapting means and methods to connect with others; being intentional about outlook; and taking actions toward a brighter future. Conclusion: Older adults used a variety of coping strategies, though their reliance on resources beyond themselves (e.g., family/friends) indicates a need to add tailored resources to existing professional services.

Determining the incidence of postpartum haemorrhage among Ontario women with and without inherited bleeding disorders: A population-based cohort study.

INTRODUCTION: At a population level, there is a poor understanding of the incidence and pre-disposing risk factors of postpartum haemorrhage (PPH) among women with inherited bleeding disorders (IBD). AIM: To determine the incidence of PPH, and identify maternal factors associated with risk of PPH among women with IBD. METHODS: We conducted a retrospective cohort study using data housed within ICES (formerly known as the Institute for Clinical Evaluative Sciences). The cohort included women with an in-hospital, live or stillborn delivery, between January 2014 and December 2019. The primary outcome was PPH (identified by ICD-10 code O72). PPH incidence and risk factors were compared between women with and without IBD. Temporal trends were assessed using the Cochrane-Armitage test. Between group differences were assessed using standardised differences (std. difference). RESULTS: Total 601,773 women were included; 2002 (.33%) had an IBD diagnosis. PPH incidence was 1.5 times higher (7.3 vs. 4.9 cases/100 deliveries, std. difference .1) among women with IBD compared to women without. Women with IBD were slightly older (31.7 vs. 30.7 years), had higher rates of hypertension, previous PPH, and induction of labour. Women with IBD were more frequently diagnosed with anaemia (4.8% vs. 1.8%; std difference .17) and had lower haemoglobin levels at admission for delivery compared to women without IBD. CONCLUSIONS: This study contributes to the literature regarding obstetric bleeding among women with IBD, showing that anaemia at delivery may be an important risk factor for PPH. Given their predisposition to anaemia, clarifying this relationship will optimise management and outcomes.

Motivation to Consent and Adhere to the FORT Randomized Controlled Trial.

The aim of this qualitative study was to identify the motivational factors that influence cancer survivors to participate and adhere to the fear of cancer recurrence (FCR) FORT randomized controlled trial (RCT). Fifteen women diagnosed with breast and gynecological cancer who took part in the FORT RCT were interviewed about their experience to consent and adhere to the trial. The transcribed interviews were content analyzed within a relational autonomy framework. The analysis revealed that the participants' motivation to consent and adhere to the FORT RCT was structured around thirteen subthemes grouped into four overarching themes: (1) Personal Influential Factors; (2) Societal Motivations; (3) Structural Influences; and (4) Gains in Emotional Support. The unique structures of the trial such as the group format, the friendships formed with other participants in their group and with the group leaders, and the right timing of the trial within their cancer survivorship trajectory all contributed to their motivation to consent and adhere to the FORT RCT. While their initial motivation to participate was mostly altruistic, it was their personal gains obtained over the course of the trial that contributed to their adherence. Potential gains in emotional and social support from psycho-oncology trials should be capitalized when approaching future participants as a mean to improve on motivations to consent and adhere.

What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis.

OBJECTIVE: Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI-SF). We also report on associations between FCR and clinical and demographic characteristics. METHODS: This is a systematic review and individual participant data (IPD) meta-analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI-SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool. RESULTS: IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI-SF (range 0-36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis. CONCLUSIONS: FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR. The protocol was prospectively registered (PROSPERO CRD42020142185).

Models of Follow-Up Care and Secondary Prevention Measures for Survivors of Colorectal Cancer: Evidence-Based Guidelines and Systematic Review.

OBJECTIVE: To provide recommendations for preferred models of follow-up care for stage I-IV colorectal (CRC) cancer survivors in Ontario; to identify signs and symptoms of potential recurrence and when to investigate; and to evaluate patient information and support needs during the post-treatment survivorship period. METHODS: Consistent with the Program in Evidence-Based Medicine's standardized approach, MEDLINE, EMBASE, PubMed, Cochrane Library, and PROSPERO databases were systematically searched. The authors drafted recommendations and revised them based on the comments from internal and external reviewers. RESULTS: Four guidelines, three systematic reviews, three randomized controlled trials, and three cohort studies provided evidence to develop recommendations. CONCLUSIONS: Colorectal cancer follow-up care is complex and requires multidisciplinary, coordinated care delivered by the cancer specialist, primary care provider, and allied health professionals. While there is limited evidence to support a shared care model for follow-up, this approach is deemed to be best suited to meet patient needs; however, the roles and responsibilities of care providers need to be clearly defined, and patients need to know when and how to contact them. Although there is insufficient evidence to recommend any individual or combination of signs or symptoms as strong predictor(s) of recurrence, patients should be educated about these and know which care provider to contact if they develop any new or concerning symptoms. Psychosocial support and empathetic, effective, and coordinated communication are most valued by patients for their post-treatment follow-up care. Continuing professional education should emphasize the importance of communication skills and coordination of communication between the patient, family, and healthcare providers.

An Evidence-Based Guideline for Surveillance of Patients after Curative Treatment for Colon and Rectal Cancer.

OBJECTIVE: To provide recommendations for a surveillance regimen that leads to the largest overall survival benefit for patients after curative treatment for Stage I-IV colon and rectal cancer. METHODS: Consistent with the Program in Evidence-Based Care's standard approach, guideline databases, i.e., MEDLINE, EMBASE, PubMed, Cochrane Library, and PROSPERO, were systematically searched. Then, we drafted recommendations and methodology experts performed an internal review of the resulting draft recommendations, which was followed by an external review by targeted experts and intended users. RESULTS: Four systematic reviews and two randomized controlled trials were identified that provided evidence for recommendations. CONCLUSIONS: For patients with stage I-III colon cancer, a medical history and physical examination should be performed every six months for three years; computed tomography (CT) of the chest-abdomen-pelvis (CT CAP) should be performed at one and three years, or one CT CAP could be performed at 18 months; the use of carcinoembryonic antigen (CEA) is optional if CT imaging is being performed; and surveillance colonoscopy should be performed one year after the initial surgery. The frequency of subsequent surveillance colonoscopy should be dictated by previous findings, but generally, colonoscopies should be performed every five years if the findings are normal. There was insufficient evidence to support these recommendations for patients with rectal cancer, Stage IV colon cancer, and patients over the age of 75 years. Patients should be informed of current recommendations and the treating physician should discuss the specific risks and benefits of each recommendation with their patients.

An investigation of fear of recurrence, attachment and caregiving experiences among ovarian cancer partner-caregivers.

OBJECTIVE: Fear of cancer recurrence (FCR) is a common concern for both cancer patients and their caregivers. Attachment insecurity is an established contributor to poorer mental health, particularly as it relates to social support. This study sought to evaluate whether attachment and caregiver experiences in cancer care were predictors of FCR. METHODS: A cross-sectional questionnaire study involving partner-caregivers of patients with ovarian cancer was conducted. Correlation analyses and multiple hierarchical regressions were used to determine the roles of attachment and caregiving experiences in cancer care on FCR, including the possible moderating role of attachment on the relationship between caregiving experiences and FCR. RESULTS: Participants (n = 82), mostly identified as white men, had post-secondary education and incomes of over $100,000 CAD, and cared for patients with advanced ovarian cancer. Forty percent of participants had clinically elevated FCR. Among the evaluated caregiving experiences in cancer care, caregiving workload (r = 0.33; p = 0.005), needing more help from healthcare providers (r = 0.28; p = 0.02), and lacking time for social relations because of caregiving (r = 0.47; p < 0.001) correlated with FCR. Attachment anxiety correlated significantly with FCR (r = 0.43; p < 0.001), but attachment avoidance did not. Attachment anxiety (ΔR2  = 0.14; p = 0.002) and lacking time for social relations (ΔR2  = 0.18; p < 0.001) contributed to the variance on FCR. Attachment insecurity did not moderate the relationships between caregiving experiences and FCR. CONCLUSIONS: Partner-caregiver attachment anxiety correlates with FCR; however, this does not influence FCR's relationship with poorer perceived support from cancer care institutions. Partner-caregivers may benefit from psychotherapies for FCR and more practical support from cancer care teams.