From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care.

OBJECTIVES: To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program. METHODS: Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison. RESULTS: Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient's treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a "one stop shop" containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate. SIGNIFICANCE OF RESULTS: This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

Barriers and enablers to the implementation of patient-reported outcome and experience measures (PROMs/PREMs): protocol for an umbrella review.

BACKGROUND: Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. METHODS: An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. DISCUSSION: This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42023421845.

An Evaluation of Publicly Available Smartphone Apps to Support Unpaid Cancer Caregivers.

CONTEXT: With advancements in mobile technology and increased access to smartphones, the use of Mobile Health applications (apps) has surged. These apps provide an innovative avenue for supporting cancer caregivers who face increasing burden and lack formal support; however, the quality of these apps has not been formally evaluated. OBJECTIVES: Evaluate the quality, usefulness, therapeutic potential, and security of publicly available apps to support unpaid cancer caregivers in managing their roles and responsibilities. METHODS: Cancer caregiving apps were identified through a search of the Apple and Google Play stores in October 2020. Two authors evaluated the apps using 1) the Mobile App Rating Scale (MARS) tool for quality, 2) complementary sections of Enlight for therapeutic persuasiveness and alliance, security and privacy, and 3) an unmet needs checklist to assess usefulness. Analyses were undertaken to identify high-scoring apps. RESULTS: Overall, 24 apps were evaluated by two authors (MB, SW). Across the sample, the mean quality score (MARS) was adequate at 65.7% (3.3/5.0, SD = .5, range: 2.3-4.2). The combined score for therapeutic persuasiveness and alliance (Enlight) was fair at 60.7% (3.0/5.0, SD = .8, range: 1.1-4.5), and the privacy and security checklists yielded means of 79.3% (6.3/8.0, SD = 1.4, range: 50.0%-100.0%) and 41.3% (1.7/4.0, SD = 1.4, range: 0.0-100.0%), respectively. The unmet needs checklist was 43.2% (SD = 5.3, range: 9.4%-69.7%). A hierarchical cluster analysis identified 12 high scoring apps. CONCLUSION: Superior cluster apps scored acceptably for quality and privacy and low for security and usefulness. Findings will assist clinicians, caregivers, and families identify apps to support cancer caregivers.

Non-pharmacological Interventions for Caregivers with Depression and Caregivers of Care Recipients with Co-morbid Depression: Systematic Review and Meta-analysis.

BACKGROUND: Caregivers experiencing depression or caring for people experiencing depression are at risk of high burden. This systematic review examined the effect of non-pharmacological interventions for caregivers that (a) target improving caregivers' depressive symptoms, (b) help caregivers manage the depressive symptoms of the person for whom they provide care, or (c) both (a) and (b). METHODS: Eligible trials published between January 1, 1985, and May 30, 2019 were retrieved from five electronic databases. The studies' methodological quality was assessed against 15 criteria. Pooled effect sizes (ESs) were calculated, and heterogeneity assessed using the Higgin's I2 statistic. Meta-regressions were also conducted to identify significant moderators (participant sub-group analyses) and mediators (identify how the interventions worked). RESULTS: Sixteen studies evaluating 18 interventions were included for review. These studies included a total of 2178 participants (mean = 94, SD = 129.18, range 25-518). The most common condition (n = 10/16) of the care recipient was dementia. The average methodological score was in the moderate range (8.76/15). Interventions had a moderate effect on caregivers' depression in the short term (ES = - 0.62, 95% CI - 0.81, - 0.44), but the effect dissipated over time (ES = - 0.19; 95% CI - 0.29, - 0.09). A similar pattern was noted for anxiety. The moderator analysis was not significant, and of the mediators examined, significant ones were self-management skills of taking action, problem solving, and decision-making. DISCUSSION: Non-pharmacological interventions are associated with improvement of depression and anxiety in caregivers, particularly in the short term. The main recommendation for future interventions is to include the self-management skills taking action, problem-solving, and decision-making. Enhancing the effect of these interventions will need to be the focus of future studies, particularly examining the impact of booster sessions. More research is needed on non-dementia caregiving and dyadic approaches.

Evaluation of online, publicly available cancer-related educational and self-management resources for symptom management.

OBJECTIVE: The aims of this study were to evaluate the readability, suitability, and quality of publicly available online self-management (SM) resources for people with cancer. METHODS: Resources were identified using two strategies: (1) a targeted search of 20 Canadian organizations and (2) a Google search. These were evaluated using the Suitability Assessment of Materials (SAM), the DISCERN tool for quality, and readability indices. The SM skills (e.g., problem-solving) and symptom management strategies addressed by each resource were also assessed. Descriptive and hierarchical cluster analyses were performed to identify resources of the highest suitability and quality as well as resource characteristics associated with higher quality and suitability. RESULTS: A total of 92 resources were evaluated. The mean reading grade level for English resources was 10.29 (SD = 1.64, range of 7.05 to 15.09) and 12.62 for French resources (SD = 2.27, range of 10.12 to 15.65). The mean SAM score across the sample was 50.4% (SD = 10.6%), or 'adequate', and the mean DISCERN score was 61.1% (SD = 11.8%), or 'fair'. The cluster analysis indicated that 10 resources scored highly on both the SAM and the DISCERN. In total, 91 symptom management strategies were identified. On average, resources addressed 2.73 SM skills (SD = 1.58). CONCLUSIONS: There is a need for plain language resources for people with lower reading ability and resources that incorporate more SM skills. Study findings will help healthcare professionals, patients, and their families identify optimal resources to address cancer-related symptoms.