Patients' considerations of time toxicity when assessing cancer treatments with marginal benefit.

BACKGROUND: Effective techniques for eliciting patients' preferences regarding their own care, when treatment options offer marginal gains and different risks, is an important clinical need. We sought to evaluate the association between patients' considerations of the time burdens of care ("time toxicity") with decisions about hypothetical treatment options. METHODS: We conducted a secondary analysis of a multicenter, mixed-methods study that evaluated patients' attitudes and preferences toward palliative-intent cancer treatments that delayed imaging progression-free survival (PFS) but did not improve overall survival (OS). We classified participants based on if they spontaneously volunteered one or more consideration of time burdens during qualitative interviews after treatment trade-off exercises. We compared the percentage of participants who opted for treatments with no PFS gain, some PFS gain, or who declined treatment regardless of PFS gain (in the absence of OS benefit). We conducted narrative analysis of themes related to time burdens. RESULTS: The study cohort included 100 participants with advanced cancer (55% women, 63% age > 60 years, 38% with gastrointestinal cancer, and 80% currently receiving cancer-directed treatment. Forty-six percent (46/100) spontaneously described time burdens as a factor they considered in making treatment decisions. Participants who mentioned time (vs not) had higher thresholds for PFS gains required for choosing additional treatments (P value .004). Participants who mentioned time were more likely to decline treatments with no OS benefit irrespective of the magnitude of PFS benefit (65%, vs 31%). On qualitative analysis, we found that time burdens are influenced by several treatment-related factors and have broad-ranging impact, and illustrate how patients' experiences with time burdens and their preferences regarding time influence their decisions. CONCLUSIONS: Almost half of participating patients spontaneously raised the issue of time burdens of cancer care when making hypothetical treatment decisions. These patients had notable differences in treatment preferences compared to those who did not mention considerations of time. Decision science researchers and clinicians should consider time burdens as an important attribute in research and in clinic.

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.

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.

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.

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.

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.

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.

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).

What do partners of patients with ovarian cancer need from the healthcare system? An examination of caregiving experiences in the healthcare setting and reported distress.

PURPOSE: Ovarian cancer is typically characterized by late-stage diagnoses, frequent recurrences, and treatment changes. Ovarian cancer caregivers (OCC) are thus heavily involved with cancer care and often are highly distressed. METHODS: We explored the relationship with OCC distress and caregiving experiences within the healthcare system and with the healthcare providers (HCP), using a cross-sectional questionnaire study. OCC provided sociodemographic and patient medical information, and completed measures of consequences of caregiving and needs from HCP, and of depression and anxiety. We recruited participants through advertisements and two cancer centers. RESULTS: N = 82 OCC provided complete questionnaires. Participants on average were 57.2 years old, English-speaking white men, and were partnered for 28.5 years. On average, patients were diagnosed at stage III, and treated with surgery and chemotherapy. Eight percent met clinical cut-offs for depression (23.2% in sub-clinical range), and 23.2% met clinical cut-offs for anxiety (20.7% in sub-clinical range). Depression and anxiety were significantly correlated with lacking time for social relationships, higher workload, lacking information, and needing more help from HCP. Only depression was correlated with problematic quality of information from HCP. CONCLUSIONS: OCC distress is related to their caregiving roles within the cancer care system, and how HCP support them in their responsibilities, which may contribute to a lack of time to access their supports. Perceived involvement by the HCP has an important influence on OCC distress. Higher demands of caregiving and insufficient support from the cancer care system may relate to increased distress. Our study supports the need for better integration of caregiver supports from within the healthcare system.

Coping during COVID-19: a mixed methods study of older cancer survivors.

PURPOSE: Older cancer survivors are among the most vulnerable to the negative effects of COVID-19 and may need specific survivorship supports that are unavailable/restricted during the pandemic. The objective of this study was to explore how older adults (≥ 60 years) who were recently (≤ 12 months) discharged from the care of their cancer team were coping during the pandemic. METHODS: We used a convergent mixed method design (QUAL+quan). Quantitative data were collected using the Brief-COPE questionnaire. Qualitative data were collected using telephone interviews to explore experiences and strategies for coping with cancer-related concerns. RESULTS: The mean sample age (n = 30) was 72.1 years (SD 5.8, range 63-83) of whom 57% identified as female. Participants' Brief-COPE responses indicated that they commonly used acceptance (n = 29, 96.7%), self-distraction (n = 28, 93.3%), and taking action (n = 28, 93.3%) coping strategies. Through our descriptive thematic analysis, we identified three themes: (1) drawing on lived experiences, (2) redeploying coping strategies, and (3) complications of cancer survivorship in a pandemic. Participants' coping strategies were rooted in experiences with cancer, other illnesses, life, and work. Using these strategies during the pandemic was not new-they were redeployed and repurposed-although using them during the pandemic was sometimes complicated. These data were converged to maximize interpretation of the findings. CONCLUSIONS: Study findings may inform the development or enhancement of cancer and non-cancer resources to support coping, particularly using remote delivery methods within and beyond the pandemic. Clinicians can engage a strengths-based approach to support older cancer survivors as they draw from their experiences, which contain a repository of potential coping skills.

Healthcare Simulation Use to Support Guidelines Implementation: An Integrative Review.

INTRODUCTION: Simulation-based education is a useful teaching and learning strategy that can help to implement guidelines into healthcare settings. Therefore, the purpose of this paper is to collate, synthesize, and analyze the literature focusing on the use of simulation as an educational strategy to support guidelines implementation among healthcare providers (HCPs). MATERIALS AND METHODS: Integrative literature review using the methodology proposed by Ganong. RESULTS/DISCUSSION: Twenty-three articles were selected, the majority (n=19, 82%) used simulation in practice settings and pre- and post-test measurement (n=16, 69%). All studies that assessed simulation effects highlighted that the use of simulation improved the measured outcomes related to guideline implementation. Simulation-based education can be an effective strategy to support guidelines implementation among HCPs, but aspects such as cost involved, time constraints, training of educators, and the HCPs' learning needs can affect its applicability. Future research should focus on more transparent reports related to the guidelines for simulation content, virtual learning, costs of simulation, and measurement of the long-term effects of simulation-based education.

Writing between the lines: A secondary analysis of unsolicited narratives from cancer survivors regarding their fear of cancer recurrence.

Background: Fear of cancer recurrence (FCR) is a common concern for posttreatment cancer survivors. In this secondary analysis we explore cancer survivors' unsolicited narratives on a survey about FCR. Methods: We used an interpretive descriptive approach and statistical analyses to explore these narratives and determine the characteristics of survivors who did and did not provide narratives. Findings: We developed three themes based on our analysis: describe posttreatment experiences; elaborate or contextualize FCR responses and use their voice toward change in cancer care. Those who provided narratives had lower overall FCR. Most narratives were used to provide context to responses or to indicate that some survey items were irrelevant. Conclusion: Our results highlight potential reasons for unsolicited narratives on a survey and illuminate the potential value of expressive interventions for cancer survivors. Results indicate the usefulness of mixed methods approaches where survey respondents are offered space to provide open text.

Examining the dimensionality of the Fear of Cancer Recurrence Inventory.

OBJECTIVE: Fear of cancer recurrence (FCR) is a common concern among cancer survivors, and the Fear of Cancer Recurrence Inventory (FCRI) is a frequently used measure to assess FCR. Given that the dimensionality of FCR has received recent debate, the overall goal of this secondary analysis was to re-examine the dimensionality of the FCRI using confirmatory factor analyses (CFA) to compare models of FCR, using data from a large sample of cancer survivors. METHODS: Three models of FCR (including unidimensional and multidimensional models of the FCRI) were informed by the literature and proposed a priori. Separate CFAs were conducted to test the fit of each model to the data, and models with acceptable fits were compared. RESULTS: Of all the tested FCR models, a multidimensional first-order model aligned with the originally developed 7-subscale FCRI revealed the best fit to the data (χ2  = 3359.135, P < .0001, df = 795, RMSEA = 0.057 [0.055, 0.059], CFI = 0.897, TLI = 0.888). When this 7-factor structure was loaded onto a single, second-order factor of overall FCR, the model fit statistics were slightly poorer (χ2  = 3459.632, P < .0001, df = 807, RMSEA = 0.058 [0.056, 0.060], CFI = 0.893, TLI = 0.886). However, the difference between the models was significant (chi-square difference = 103.142, P < .0001, df = 12) indicating that the first-order model was a better fit to the data. CONCLUSIONS: These results align with empirical and theoretical literature that supports the use of the FCRI as a multidimensional scale. Implications of results are discussed in light of FCR conceptualization and measurement.

Building and sustaining a postgraduate student network: The experience of oncology nurses in Canada.

Networking with individuals on a similar journey through graduate studies has been identified as an important influence in the experience of doctoral and postdoctoral students. Through the Board of Directors of the Canadian Association of Nurses in Oncology/Association canadienne des infirmières en oncologie (CANO/ACIO), student members were encouraged to establish a Doctoral Student Network (DSN) that would enable a connection through education and common interest in oncology and cancer care. Since its inception, the DSN has been dynamic in how it has addressed the evolving needs of members and in providing development opportunities to group members. To uncover and describe key aspects of its evolution, a document analysis was undertaken to reveal themes pertaining to capacity development and leadership voice as paths to leadership for DSN members. The results of this study suggest that the DSN provides a supportive environment for postgraduate nurses across Canada to connect with others in their peer group to foster engagement in educational, professional, and scholarly activities, as well as highlighting opportunities for other professional organizations interested in establishing a support network for graduate student members.