Applying Implementation Science to Identify Primary Care Providers' Enablers and Barriers to Using Survivorship Care Plans.

Primary care providers (PCPs) have been given the responsibility of managing the follow-up care of low-risk cancer survivors after they are discharged from the oncology center. Survivorship Care Plans (SCPs) were developed to facilitate this transition, but research indicates inconsistencies in how they are implemented. A detailed examination of enablers and barriers that influence their use by PCPs is needed to understand how to improve SCPs and ultimately facilitate cancer survivors' transition to primary care. An interview guide was developed based on the second version of the Theoretical Domains Framework (TDF-2). PCPs participated in semi-structured interviews. Qualitative content analysis was used to develop a codebook to code text into each of the 14 TDF-2 domains. Thematic analysis was also used to generate themes and subthemes. Thirteen PCPs completed the interview and identified the following barriers to SCP use: unfamiliarity with the side effects of cancer treatment (Knowledge), lack of clarity on the roles of different healthcare professionals (Social Professional Role and Identity), follow-up tasks being outside of scope of practice (Social Professional Role and Identity), increased workload, lack of options for psychosocial support for survivors, managing different electronic medical records systems, logistical issues with liaising with oncology (Environmental Context and Resources), and patient factors (Social Influences). PCPs value the information provided in SCPs and found the follow-up guidance provided to be most helpful. However, SCP use could be improved through streamlining methods of communication and collaboration between oncology centres and community-based primary care settings.

The Ottawa clinical fear of recurrence instruments: A screener, self-report, and clinical interview.

OBJECTIVE: Clinical fear of cancer recurrence (FCR) was recently defined by a group of experts during a Delphi study. Five criteria were agreed upon, namely: (a) high levels of preoccupation, (b) high levels of worry, (c) that are persistent, (d) hypervigilance and hypersensitivity to physical sensations that e) may result in functional impairment. No existing instruments comprehensively capture all these criteria for clinical FCR. METHODS: To remedy this gap, a set of three patient-reported outcome instruments including a one-item screener, self-report questionnaire, and semi-structured clinical interview, named the Ottawa Clinical Fear of Recurrence instruments, were developed. To do so, the research team first conducted a literature review of potential items. Additional FCR experts discussed the content of the screener and interview. The self-report's items were assessed for content validity by the same expert panel using Likert ratings and the Content Validity Index to narrow down the number of items. The three instruments were piloted with a group of cancer survivors to assess face validity following the European Organization for Research and Treatment of Cancer recommendations. RESULTS: The literature review and content validity assessment led to a final draft pre-pilot of 23 potential items for the self-report questionnaire. The instruments were piloted. Pilot study participants suggested changing wording and response options (particularly for the self-report) for greater clarity. CONCLUSIONS: Based on the feedback received, minor modifications were made, mostly for the self-report. In general, content and face validity for the three instruments were good for both experts and cancer survivors.

Afraid and tired: A longitudinal study of the relationship between cancer-related fatigue and fear of cancer recurrence in long-term cancer survivors.

OBJECTIVE: Cancer-related fatigue (CRF) and fear of cancer recurrence (FCR) are two common concerns experienced by cancer survivors. However, the relationship between these two concerns is poorly understood, and whether CRF and FCR influence each other over time is unclear. METHODS: Data were from a national, prospective, longitudinal study, the American Cancer Society's Study of Cancer Survivors-I (SCS-I). Surveys were completed by 1395 survivors of 10 different cancer types at three time-points, including assessment 1.3 years (T1), 2.2 years (T2) and 8.8 years (T3) following their cancer diagnosis. CRF was assessed using the fatigue-inertia subscale of the Profile of Mood States, and FCR by the FCR subscale of the Cancer Problems in Living Scale. Multiple group random intercepts cross-lagged panel models investigated prospective associations between CRF and FCR. RESULTS: For younger participants (at or below median age of 55 years, n = 697), CRF at T1 and T2 marginally and significantly predicted FCR at T2 and T3, respectively, but no lagged effects of FCR on subsequent CRF were observed. Cross-lagged effects were not observed for survivors over 55 years of age. CONCLUSION: Both CRF and FCR are debilitating side effects of cancer and its treatments. Given that CRF may be predictive of FCR, it possible that early detection and intervention for CRF could contribute to lowering FCR severity.

SUMO-3 promotes the ubiquitin-dependent turnover of TRIM55.

Human muscle-specific RING fingers (MURFs) are members of the tripartite motif (TRIM) family of proteins characterized by their C-terminal subgroup one signature domain. MURFs play a role in sarcomere formation and microtubule dynamics. It was previously established that some TRIMs undergo post-translational modification by small ubiquitin-like modifier (SUMO). In this study, we explored the putative SUMOylation of MURF proteins as well as their interactions with SUMO. MURF proteins (TRIM54, TRIM55, and TRIM63) were not found to be SUMOylated. However, TRIM55 turnover by proteasomal and lysosomal degradation was higher upon overexpression of SUMO-3 but not of SUMO-1. Furthermore, it is predicted that TRIM55 contains two potential SUMO-interacting motifs (SIMs). We found that SIM1- and SIM2-mutated TRIM55 were more stable than the wild-type (WT) protein partly due to decreased degradation. Consistently, SIM-mutated TRIM55 was less polyubiquitinated than the WT protein, despite similar monoubiquitination levels. Using IF microscopy, we observed that SIM motifs influenced TRIM55 subcellular localization. In conclusion, our results suggest that SUMO-3 or SUMO-3-modified proteins modulate the localization, stability, and RING ubiquitin ligase activity of TRIM55.

It's time to address fear of cancer recurrence in family caregivers: usability study of an virtual version of the Family Caregiver-Fear Of Recurrence Therapy (FC-FORT).

Background: Family caregivers of cancer survivors experience equal or greater levels of fear of cancer recurrence (FCR) than survivors themselves. Some interventions have demonstrated their ability to reduce FCR among cancer survivors and dyads (patient and caregivers). However, to date, no validated intervention exists to focus solely on family caregiver's FCR. Objectives: This study aimed to (1) adapt the evidence-based in-person Fear Of Recurrence Therapy (FORT) for family caregivers (referred here in as FC-FORT) and to a virtual delivery format and (2) test its usability when offered virtually. Methods: The adaptation of FC-FORT was overseen by an advisory board and guided by the Information Systems Research Framework. Following this adaptation, female family caregivers and therapists were recruited for the usability study. Participants took part in 7 weekly virtual group therapy sessions, a semi-structured exit interview and completed session feedback questionnaires. Therapists were offered a virtual training and weekly supervision. Fidelity of treatment administration was assessed each session. Quantitative data were analyzed using descriptive statistics. Exit interviews were transcribed verbatim using NVivo Transcription and coded using conventional content analysis. Results were presented back to the advisory board to further refine FC-FORT. Results: The advisory board (n = 16) met virtually on 7 occasions to adapt FC-FORT (i.e., patient manuals, virtual format) and discuss recruitment strategies. Minor (e.g., revised text, adapted materials to virtual format) and major adaptations (e.g., added and rearranged sessions) were made to FC-FORT and subsequently approved by the advisory board. Four family caregivers and three therapists took part in the first round of the usability testing. Six family caregivers and the same three therapists took part in the second round. Overall, participants were very satisfied with FC-FORT's usability. Qualitative analysis identified 4 key themes: usability of FC-FORT, satisfaction and engagement with content, group cohesion, and impact of FC-FORT. All participants indicated that they would recommend FC-FORT to others as is. Conclusions: Using a multidisciplinary advisory board, our team successfully adapted FC-FORT and tested its usability using videoconferencing. Results from this study indicate that the efficacy and acceptability of FC-FORT are now ready to be tested in a larger pilot study.

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.

Fear of cancer recurrence therapy (FORT): A randomized controlled trial.

OBJECTIVE: Most fear of cancer recurrence (FCR) interventions have small effects, and few target FCR. This randomized controlled trial (RCT) with breast and gynecological cancer survivors evaluated the efficacy of a cognitive-existential fear of recurrence therapy (FORT) compared to an attention placebo control group (living well with cancer [LWWC]) on FCR. METHOD: One hundred and sixty-four women with clinical levels of FCR and cancer distress were randomly assigned to 6-weekly, 120 min FORT (n = 80) or LWWC (n = 84) group sessions. They completed questionnaires at baseline (T1), posttreatment (T2; primary endpoint), 3 (T3), and 6 months (T4) posttreatment. Generalized linear models were used to compare group differences in the fear of cancer recurrence inventory (FCRI) total score and secondary outcomes. RESULTS: FORT participants experienced greater reductions from T1 to T2 on FCRI total with a between-group difference of -9.48 points (p = .0393), resulting in a medium effect of -0.530, with a maintained effect at T3 (p = .0330) but not at T4. For the secondary outcomes, improvements were in favor of FORT, including FCRI triggers (p = .0208), FCRI coping (p = .0351), cognitive avoidance (p = .0155), need for reassurance from physicians (p = .0117), and quality of life (mental health; p = .0147). CONCLUSIONS: This RCT demonstrated that FORT, compared to an attention placebo control group, resulted in a greater reduction in FCR posttreatment and at 3 months posttreatment in women with breast and gynecological cancer, indicating its potential as a new treatment strategy. We recommend a booster session to sustain gains. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

An evaluation of the Interdisciplinary Psychosocial Oncology Research Group and Laboratory: An initiative to enable intersectoral and interdisciplinary collaboration.

Background: Psychosocial oncology (PSO) is an interdisciplinary field that is often practised and researched in disciplinary silos. The Interdisciplinary PSO Research Group and Laboratory (IPSORGL) was developed in Ottawa (Ontario) to foster interdisciplinary collaboration and training amongst trainees, healthcare professionals (HCPs), and researchers. Methods: The research team conducted an implementation and outcome evaluation of the IPSORGL. Data were collected using sequential mixed methods, including surveys and interviews. Results: Eight trainees, six HCPs, and five researchers completed the survey. Six trainees and four HCPs participated in an interview. Benefits of the IPSORGL included establishing interdisciplinary connections and collaborations and obtaining unique training in a supportive environment. Challenges included members' differing preferences for meeting formats and content, and difficulties prioritizing the IPSORGL over other academic or clinical demands. Conclusions: The IPSORGL fosters essential interdisciplinary training and collaboration, which bolsters psychosocial oncology research and practice. The sustainability of such initiatives, however, requires formal institutional support.

A new landscape in illness uncertainty: A systematic review and thematic synthesis of the experience of uncertainty in patients with advanced cancer receiving immunotherapy or targeted therapy.

OBJECTIVE: Over the past 20 years, immunotherapy and targeted therapy (TT) have been extending the life expectancy and providing hope for a growing number of patients with advanced and metastatic cancer. However, the efficacy, side effects, and overall prognosis of these treatments are highly unpredictable. Recent research suggests that these patients may be experiencing significant uncertainty which impacts their functioning. This study reviewed the literature on the experiences of uncertainty for individuals with advanced or metastatic cancer patients who are receiving immunotherapy or TT. METHOD: A systematic literature review was conducted. Data was extracted from studies by pairs of reviewers. Literature quality was appraised using the Critical Appraisal Skills Program checklist. Following data extraction, thematic synthesis was used to summarize findings across studies and generate overarching themes. RESULTS: Fifteen qualitative studies were included. Findings highlighted impacts of various sources of uncertainty (financial, emotional, social), unmet needs related to uncertainty (practical, informational, communication), and recommendations for the management of uncertainty. Clinical implications and study limitations were indicated. CONCLUSIONS: Findings were situated within Mishel's Uncertainty in Illness Theory and the literature on supportive care for advanced cancer populations. Recommendations related to improving healthcare provider communication and balancing hope and expectations for treatment outcomes were highlighted. Further research is needed to investigate experiences of uncertainty in this population. Tailored interventions for uncertainty may be warranted.

Incidence, factors, and disparities related to cancer among Black individuals in Canada: A scoping review.

BACKGROUND: In Canada, two of five individuals will be diagnosed with cancer in their lifetime and one in four will die from this disease. Given the disparities observed in health research among Black individuals, we conducted a scoping review to analyze the state of cancer research in Canadian Black communities regarding prevalence, incidence, screening, mortality, and related factors to observe advances and identify gaps and disparities. METHODS: A comprehensive search strategy was developed and executed in December 2021 across 10 databases (e.g., Embase). Of 3451 studies generated by the search, 19 were retained for extraction and included in this study. RESULTS: Studies were focused on a variety of cancer types among Black individuals including anal, breast, cervical, colorectal, gastric, lung, and prostate cancers. They included data on incidence, stage of cancer at diagnosis, type of care received, diagnostic interval length, and screening. A few studies also demonstrated racial disparities among Black individuals. This research reveals disparities in screening, incidence, and quality of care among Black individuals in Canada. CONCLUSIONS: Given the gaps observed in cancer studies among Black individuals, federal and provincial governments and universities should consider creating special funds to generate research on this important health issue. PLAIN LANGUAGE SUMMARY: Important gaps were observed on research on cancer among Black communities in Canada. Studies included in the scoping review highlights disparities in screening, incidence, and quality of care among Black individuals in Canada.

The Evaluation of the Suitability, Quality, and Readability of Publicly Available Online Resources for the Self-Management of Fear of Cancer Recurrence.

Cancer survivors often rely on the internet for health information, which has varying levels of readability, suitability, and quality. There is a need for high-quality online self-management resources for cancer survivors with fear of cancer recurrence (FCR). This study evaluated the readability, suitability, and quality of publicly available online FCR self-management resources. A Google search using FCR-related keywords identified freely available FCR self-management resources for cancer survivors in English. Resource readability (reading grade level), suitability, and quality were evaluated using relevant assessment tools. Descriptive statistics and cluster analysis identified resources with higher suitability and quality scores. Mean resource (n = 23) readability score was grade 11 (SD = 1.6, Range = 9-14). The mean suitability score was 56.0% (SD = 11.4%, Range = 31.0-76.3%), indicating average suitability and the mean quality score was 53% (SD = 11.7%, Range = 27-80%), indicating fair quality. A cluster of 15 (65%) resources with higher suitability and quality scores was identified. There were no significant associations between suitability or quality scores and the type of organisation that published the resources. Online FCR self-management resources varied in readability, suitability and quality. Resources with higher quality and suitability scores relative to other resources are identified for use by healthcare professionals and cancer survivors. Resources that are more culturally appropriate, with lower reading grade levels and detailed self-management strategies are needed.

The Association between Survivorship Care Plans and Patient-Reported Satisfaction and Confidence with Follow-Up Cancer Care Provided by Primary Care Providers.

Survivorship care plans aim to facilitate a smooth transition from tertiary to primary care settings after primary cancer treatment is completed. This study sought to identify the sociodemographic factors associated with receiving a survivorship care plan and examine the relationship between receiving a plan and confidence in follow-up care delivered by primary care providers. A cross-sectional analysis of the Canadian Partnership Against Cancer's Experiences of Cancer Patients in Transition Study was conducted (n = 9970). Separate adjusted multinomial logistic regression models assessed the relationship between survivorship care plans and follow-up care outcomes. Proportion of survivors more likely to receive a survivorship care plan varied by numerous sociodemographic and medical factors, such as cancer type (colorectal and prostate), gender (male), and education (high school or less). In unadjusted and adjusted models, individuals who received a Survivorship Care Plan had significantly higher odds of: having felt their primary care providers were involved; agreeing that their primary care providers understood their needs, knew where to find supports and services, and were able to refer them directly to services; and were confident that their primary care provider could meet their follow-up care needs.

Psychosocial Aspects of Living Long Term with Advanced Cancer and Ongoing Systemic Treatment: A Scoping Review.

(1) Background: Studies examining the psychosocial impact of living long term on systemic treatment in advanced cancer patients are scarce. This scoping review aimed to answer the research question "What has been reported about psychosocial factors among patients living with advanced cancer receiving life-long systemic treatment?", by synthesizing psychosocial data, and evaluating the terminology used to address these patients; (2) Methods: This scoping review was conducted following the five stages of the framework of Arksey and O'Malley (2005); (3) Results: 141 articles published between 2000 and 2021 (69% after 2015) were included. A large variety of terms referring to the patient group was observed. Synthesizing qualitative studies identified ongoing uncertainty, anxiety and fear of disease progression or death, hope in treatment results and new treatment options, loss in several aspects of life, and worries about the impact of disease on loved ones and changes in social life to be prominent psychosocial themes. Of 82 quantitative studies included in the review, 76% examined quality of life, 46% fear of disease progression or death, 26% distress or depression, and 4% hope, while few studies reported on adaptation or cognitive aspects. No quantitative studies focused on uncertainty, loss, or social impact; (4) Conclusion and clinical implications: Prominent psychosocial themes reported in qualitative studies were not included in quantitative research using specific validated questionnaires. More robust studies using quantitative research designs should be conducted to further understand these psychological constructs. Furthermore, the diversity of terminology found in the literature calls for a uniform definition to better address this specific patient group in research and in practice.

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).

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.

A systematic mixed studies review of fear of cancer recurrence in families and caregivers of adults diagnosed with cancer.

PURPOSE: Fear of cancer recurrence (FCR) may be equally prevalent, persistent and burdensome in cancer caregivers as in survivors. This systematic review evaluated FCR prevalence, severity, correlates, course, impact and interventions in cancer caregivers. METHODS: Electronic databases were searched from 1997 to May 2021. Two reviewers identified eligible peer-reviewed qualitative or quantitative studies on FCR in adult caregivers or family members of adult cancer survivors. The risk of bias was assessed using the Cochrane Risk of Bias tools for randomised and non-randomised studies and the Mixed-Methods Appraisal Tool. A narrative synthesis and thematic synthesis occurred on quantitative and qualitative studies, respectively. RESULTS: Of 2418 papers identified, 70 reports (59 peer-reviewed articles, 11 postgraduate theses) from 63 studies were included. Approximately 50% of caregivers experienced FCR. Younger caregivers and those caring for survivors with worse FCR or overall health reported higher FCR. Most studies found caregivers' FCR levels were equal to or greater than survivors'. Caregivers' FCR was persistently elevated but peaked approaching survivor follow-up appointments. Caregivers' FCR was associated with poorer quality of life in caregivers and survivors. Three studies found couple-based FCR interventions were acceptable, but had limited efficacy. CONCLUSIONS: FCR in caregivers is prevalent, persistent and burdensome. Younger caregivers of survivors with worse overall health or FCR are at the greatest risk. Further research on identifying and treating caregivers' FCR is required. IMPLICATIONS FOR CANCER SURVIVORS: Caregiver and survivor FCR are similarly impactful and appear interrelated. Addressing FCR may improve outcomes for both cancer caregivers and survivors.