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.

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.

Phase II trial of a depression self-care intervention for adult cancer survivors.

Supported self-care interventions are a low-intensity treatment for depression that has received little research attention in the cancer population. This is a phase II intervention only study to test the feasibility, acceptability and preliminary effectiveness of a depression self-care intervention for cancer patients who have completed their primary treatment and have moderate depressive symptoms. The self-care intervention was adapted from a successful model for people with chronic physical conditions, following focus groups with cancer care professionals and patients. The support was delivered by telephone by a trained lay coach who provided up to 8 weekly coaching contacts. A variety of recruitment methods were tested; those with the highest yield of eligible subjects per research staff time were electronic mailings to community support group members and social media posting. Sixty-eight people were contacted about the study over an 11-month period, of whom 34 (49%) were eligible; 32 were enrolled (94% recruitment rate); and 25 completed 2-month follow-up (78% retention). The mean severity of PHQ-9 depression decreased significantly from screening to 2 months (12.8 to 7.0, p < .0001). The intervention is a promising treatment option for cancer survivors, demonstrating sufficient effectiveness and feasibility to proceed with a phase III clinical trial.

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.

How to know what to know: Information challenges for women in the diagnostic phase of breast cancer.

OBJECTIVE: To explore how women describe efforts to seek, appraise and interpret information during the diagnostic phase of her breast cancer care. METHODS: Qualitative interviews with 35 women with breast cancer across Canada, using audio/video recording. Thematic analysis was used to identify topics important to participants (original results published: www.healthexperiences.ca). Secondary analysis of transcripts to identify how women described information flow, content, and management strategies. RESULTS: Women adopt different strategies to optimize access to information, while acknowledging the negative effects of information overload and lack of relevant information. They propose small steps towards gathering and managing information, and to focus initially on understanding their illness. CONCLUSION: Different strategies can help to ensure that women have the right information, in the right format, at the right time. Some of these strategies include developing guidance on how to 'handle' information, helping healthcare professionals identify patient's information preferences, improving the availability, quality and access to experiential information, and facilitating acces to electronic information that can tailor information. Further research to understand how women handle information can inform strategies to help newly-diagnosed patients navigate available information. PRACTICE IMPLICATIONS: Healthcare professionals can work in partnership with patients to tailor reliable information to support informed decision-making.

Using a Mobile App-Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data.

BACKGROUND: Women diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women's capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others' experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs-offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area. OBJECTIVE: This study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network. METHODS: In a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women's experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women's personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey. RESULTS: The secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool. CONCLUSIONS: Developing reliable, evidence-based tools and apps that are based on diverse collections of people's experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer.