Women with ovarian cancer's information seeking and avoidance behaviors: an interview study.

Objectives: Despite the importance of using information for ovarian cancer (OvCa) disease management and decision-making, some women with OvCa do not actively seek out information. The purpose of this study is to investigate factors that influence information seeking behaviors and information avoidance behaviors and information resources among women with OvCa and their caregivers. Materials and methods: We conducted in-depth interviews with OvCa patients or caregivers of OvCa (n = 20) and employed deductive and inductive coding methodologies for analysis. Results: Our analysis revealed 5 emerging themes associated with active information seeking behavior, 5 themes of passive information acquisition, and 4 themes of information avoidance behavior. Additionally, we identified participants' preferred information sources for OvCa management, such as health organization or government operated resources and web-based social groups. Discussion: To enhance information access, strategies should be developed to motivate people with OvCa to seek rather than avoid information. The study emphasizes the significance of promoting patient-provider communication and leveraging strong social support networks for effective information acquisition. Conclusion: Our findings provide valuable implications for clinical practice and policymaking, emphasizing the need to improve access to information for individuals with OvCa. By addressing the identified factors influencing information seeking behaviors, healthcare professionals and policymakers can better support patients and caregivers in their information-seeking journey, ultimately enhancing disease management and decision-making outcomes.

The female self-advocacy in Cancer Survivorship scale is a psychometrically sound measure of self-advocacy in male cancer survivors.

OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.

Dynamic Associations Between Daily Pain and Mood during Chemotherapy for Gynecologic Cancers.

BACKGROUND: Pain and mood disturbances, such as anxiety and depression, are common symptoms in gynecologic cancer. Their associations and the role of personality traits in pain adaptation during chemotherapy remain unclear. This ancillary data analysis aimed to investigate these relationships. AIM: To (1) depict the temporal trend of daily pain severity; (2) evaluate dynamic associations between mood and pain; and (3) explore personality traits (neuroticism and conscientiousness) as moderators of the mood-pain relationship during chemotherapy for gynecologic cancer. METHOD: Symptom severity was assessed daily throughout chemotherapy, while personality, clinical, and demographic characteristics were assessed at baseline. Twenty-seven women with gynecologic cancer who completed daily symptom assessments for at least four cycles were included in the analyses. RESULTS: Pain severity decreased slightly during chemotherapy. Multilevel modeling supported significant associations between pain and anxiety (b = 0.24, standard error [SE] = 0.06, p = .001) and depression (b = 0.30, SE = 0.08, p = .002). Time-varying effect modeling showed significant associations between anxiety and pain that initially increased and then decreased; and significant associations between depression and pain steadily decreased over the first four cycles of chemotherapy. Neuroticism moderated the association between anxiety and pain (b = 0.15, SE = 0.06, p < .05), with anxiety more strongly associated with pain in those with higher neuroticism. CONCLUSIONS: This study highlights the dynamic nature of pain and its associations with anxiety and depression in individuals with gynecologic cancer undergoing chemotherapy. The findings have implications for understanding pain and developing tailored psychosocial symptom management interventions to prevent pain during chemotherapy.

Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Family Caregivers.

Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.

Predictors of Healthcare Utilization in Family Caregivers of Persons With a Primary Malignant Brain Tumor.

ABSTRACT: BACKGROUND: Negative physical health results from the emotional stress of providing care to a family member with a primary malignant brain tumor; however, the downstream effects on caregivers' healthcare utilization (HCU) are unknown. This analysis examined associations between caregivers' emotional health and markers of HCU during the 6 months after patients' diagnoses. METHODS: Caregivers' self-report HCU data from a longitudinal study with 116 neuro-oncology caregivers were analyzed. Healthcare utilization was operationalized as number of prescription medications, reporting visits to primary care providers (PCPs), nature of PCP visit, number of comorbid conditions, and change in comorbid conditions. Potential predictors were caregivers' depressive symptoms (Center for Epidemiologic Studies-Depression Scale), hours providing care per day, mastery (Pearlin and Schooler), and burden (Caregiver Reaction Assessment). Logistic mixed effects modeling were used. RESULTS : Caregivers with higher levels of depressive symptoms ( P < .01), anxiety ( P = .02), burden related to schedule ( P = .02), and abandonment ( P < .01) were more likely to report worsening comorbid conditions. Those with higher mastery ( P = .02) were less likely to report worsening comorbid conditions. Caregivers who had a PCP visit and reported higher burden related to feelings of self-esteem ( P = .03) were more likely to report an illness-related visit. CONCLUSION : Findings suggest a relationship between neuro-oncology caregivers' emotional health and their HCU. Data highlight the importance of caregivers' PCPs identifying caregivers at risk for deteriorating health and increased HCU and intervene to ensure caregivers' self-care.

Availability of Family Caregiver Programs in US Cancer Centers.

Importance: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. Objective: To describe and characterize the availability of family caregiver support programs in US cancer centers. Design, Setting, and Participants: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer-accredited US cancer centers. Data analysis was performed in May and June 2023. Main Outcomes and Measures: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. Results: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ2 = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). Conclusions and Relevance: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.

Palliative Care in Survivors of Critical Illness: A Qualitative Study of Post-Intensive Care Unit Program Clinicians.

Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. Design: Qualitative inquiry using semistructured interviews and framework analysis. Results were mapped using the Consolidated Framework for Implementation Research. Setting/Subjects: We interviewed 29 international members (United States, United Kingdom, Canada) of the Critical and Acute Illness Recovery Organization post-ICU clinic collaborative. Results: All interprofessional clinicians described components of palliative care as essential to post-ICU clinic practice, including symptom management, patient/family support, facilitation of goal-concordant care, expectation management and anticipatory guidance, spiritual support, and discussion of future health care wishes and advance care planning. Facilitators promoting palliative care strategies were clinician level, including first-hand experience, perceived value, and a positive attitude regarding palliative care. Clinician-level barriers were reciprocals and included insufficient palliative care knowledge, lack of self-efficacy, and a perceived need to protect ICU survivors from interventions the clinician felt may adversely affect recovery or change the care trajectory. System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.

The feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game for women with advanced breast or gynecologic cancer.

BACKGROUND: Cancer clinicians and systems aim to provide patient-centered care, but not all patients have the self-advocacy skills necessary to ensure their care reflects their needs and priorities. This study examines the feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer. METHODS: Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet-based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale) using intention-to-treat analysis. RESULTS: Seventy-eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach-to-consent rate; 93% enroll-to-randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention's (75%) and trial's (87%) acceptability. Participants in the intervention group experienced significant improvements in self-advocacy at 3 and 6 months compared to participants in the control group. CONCLUSIONS: Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes.

Effects of Childcare, Work, and Caregiving Intensity on Male and Female Family Caregivers.

OBJECTIVES: The Behavioral Risk Factor Surveillance System sampled 54,076 caregivers between 2015 and 2017 providing an opportunity to evaluate risk factors for poor mental and physical health among a representative sample of U.S. adult caregivers. This study aimed to evaluate the impact of childcare, work status, and intensity of caregiving among men and women caring for older adults (n = 17,271). METHODS: Controlling for sociodemographic factors, separate logistic regression analysis for women and men were carried out to assess the main and interaction effects of childcare, work status, and intensity of caregiving on number of poor mental and physical health days in the last month. RESULTS: Intensive caregiving demands had adverse effects on both women and men, but being in the workforce was beneficial to both men and women. Women with children at home reported adverse mental health effects but better physical health, while men with children at home reported adverse physical health effects. For women, the combination of not working, children in the household, and high-intensity caregiving were most detrimental to their mental health. Among men, those not working with children in the household, regardless of caregiving intensity, were at highest risk of adverse mental health effects. DISCUSSION: Our findings identify caregivers at high risk of adverse outcomes but also point to the need for more fine-grained analyses of how families negotiate the allocation of childcare, work, and caregiving responsibilities over time.

The Relationship between Personal and Contextual Factors and Participation Restriction in Mid-Life Caregivers.

OBJECTIVES: Mid-life family caregivers (CGs) are at risk for participation restriction, which can worsen quality of care for care recipients (CR) and increase CG burden and poor health. We aimed to identify factors associated with participation restriction in mid-life CGs. METHODS: This was a cross-sectional study of CGs aged 40-64 years (n = 1100) from the 2015 cohort of the National Study of Caregiving (NSOC)/National Health and Aging Trends Study (NHATS). Multivariate logistic regression was used to evaluate personal and caregiving attributes associated with restricted participation. RESULTS: Individual items from the negative and Positive aspects of caregiving (PAC) scales were associated with participation restriction. Mid-life caregivers with "frequent changes to caregiving routine" and "no time for self" were more likely to report restricted participation and those feeling "closer to the CR" were less likely to report restricted participation. DISCUSSION: Interventions to optimize caregiving routines and improve dyadic relationships could decrease participation restriction in mid-life CGs.

Examining the needs of survivors of critical illness through the lens of palliative care: A qualitative study of survivor experiences.

OBJECTIVE: To examine the needs of adult survivors of critical illness through a lens of palliative care. RESEARCH METHODOLOGY: A qualitative study of adult survivors of critical illness using semi-structured interviews and framework analysis. SETTING: Participants were recruited from the post-intensive care unit clinic of a mid-Atlantic academic medical center in the United States. FINDINGS: Seventeen survivors of critical illness aged 34-80 (median, 66) participated in the study. The majority of patients were female (64.7 %, n = 11) with a median length of index ICU stay of 12 days (interquartile range [IQR] 8-19). Interviews were conducted February to March 2021 and occurred a median of 20 months following the index intensive care stay (range, 13-33 months). We identified six key themes which align with palliative care principles: 1) persistent symptom burden; 2) critical illness as a life-altering experience; 3) spiritual changes and significance; 4) interpreting/managing the survivor experience; 5) feelings of loss and burden; and 6) social support needs. CONCLUSION: Our findings suggest that palliative care components such as symptom management, goals of care discussions, care coordination, and spiritual and social support may assist in the assessment and treatment of survivors of critical illness.

Knowledge Acquisition and Social Support in Online Health Communities: Analysis of an Online Ovarian Cancer Community.

BACKGROUND: Patients and caregivers widely use online health communities (OHCs) to acquire knowledge from peers. Questions posed in OHCs reflect participants' learning objectives and differ in their level of cognitive complexity. However, little is known about the topics and levels of participants' learning objectives and the corresponding support they receive from members of OHCs. OBJECTIVE: This study aimed to investigate the knowledge acquisition of patients and caregivers in an OHC. Specifically, we investigated the distribution and topics of posts with learning objectives at different cognitive complexity levels, the type and amount of social support provided to meet users' learning objectives at different cognitive complexity levels, and the influence of social support on the change in learning objectives. METHODS: We collected 10 years of discussion threads from one of the most active ovarian cancer (OvCa) OHCs. A mixed methods approach was used, including qualitative content analysis and quantitative statistical analysis. Initial posts with questions were manually classified into 1 of the 3 learning objectives with increasing cognitive complexity levels, from low to high, based on the Anderson and Krathwohl taxonomy: understand, analyze, and evaluate. Manual content analysis and automatic classification models were used to identify the types of social support in the comments, including emotional support and 5 types of informational support: advice, referral, act, personal experience, and opinion. RESULTS: The original data set contained 909 initial posts and 14,816 comments, and the final data set for the analysis contained 560 posts with questions and 3998 comments. Our results showed that patients with OvCa and their caregivers mainly used OHCs to acquire knowledge for low- to medium-level learning objectives. Of the questions, 82.3% (461/560) were either understand- or analyze-level questions, in which users were seeking to learn basic facts and medical concepts or draw connections among different situations and conditions. Only 17.7% (99/560) of the questions were at the evaluate level, in which users asked other OHC members to help them make decisions or judgments. Notably, OvCa treatment was the most popular topic of interest among all the questions, regardless of the level of learning objectives. Regarding the social support received for different levels of learning objectives, significant differences were found in the advice (F2437.84=9.69; P<.001), opinion (F2418.18=11.56; P<.001), and emotional support (F2395.88=3.24; P=.01), as determined by one-way ANOVA, whereby questions at the evaluate level were more likely to receive advice, opinion, and emotional support than questions at the lower levels. Additionally, receiving social support tends to drive users to increase the cognitive complexity of the learning objective in the next post. CONCLUSIONS: Our study establishes that OHCs are promising resources for acquiring knowledge of OvCa. Our findings have implications for designing better OHCs that serve the growing OvCa community.

Associations Between Implementation of the Caregiver Advise Record Enable (CARE) Act and Health Service Utilization for Older Adults with Diabetes: Retrospective Observational Study.

BACKGROUND: The Caregiver Advise Record Enable (CARE) Act is a state level law that requires hospitals to identify and educate caregivers ("family members or friends") upon discharge. OBJECTIVE: This study examined the association between the implementation of the CARE Act in a Pennsylvania health system and health service utilization (ie, reducing hospital readmission, emergency department [ED] visits, and mortality) for older adults with diabetes. METHODS: The key elements of the CARE Act were implemented and applied to the patients discharged to home. The data between May and October 2017 were pulled from inpatient electronic health records. Likelihood-ratio chi-square tests and multivariate logistic regression models were used for statistical analysis. RESULTS: The sample consisted of 2591 older inpatients with diabetes with a mean age of 74.6 (SD 7.1) years. Of the 2591 patients, 46.1% (n=1194) were female, 86.9% (n=2251) were White, 97.4% (n=2523) had type 2 diabetes, and 69.5% (n=1801) identified a caregiver. Of the 1801 caregivers identified, 399 (22.2%) received discharge education and training. We compared the differences in health service utilization between pre- and postimplementation of the CARE Act; however, no significance was found. No significant differences were detected from the bivariate analyses in any outcomes between individuals who identified a caregiver and those who declined to identify a caregiver. After adjusting for risk factors (multivariate analysis), those who identified a caregiver (12.2%, 219/1801) was associated with higher rates of 30-day hospital readmission than those who declined to identify a caregiver (9.9%, 78/790; odds ratio [OR] 1.38, 95% CI 1.04-1.87; P=.02). Significantly lower rates were detected in 7-day readmission (P=.02), as well as 7-day (P=.03) and 30-day (P=.01) ED visits, among patients with diabetes whose identified caregiver received education and training than those whose identified caregiver did not receive education and training in the bivariate analyses. However, after adjusting for risk factors, no significance was found in 7-day readmission (OR 0.53, 95% CI 0.27-1.05; P=.07), 7-day ED visit (OR 0.63, 95% CI 0.38-1.03; P=.07), and 30-day ED visit (OR 0.73, 95% CI 0.52-1.02; P=.07). No significant associations were found for other outcomes (ie, 30-day readmission and 7-day and 30-day mortality) in both the bivariate and multivariate analyses. CONCLUSIONS: Our study found that the implementation of the CARE Act was associated with certain health service utilization. The identification of caregivers was associated with higher rates of 30-day hospital readmission in the multivariate analysis, whereas having identified caregivers who received discharge education was associated with lower rates of readmission and ED visit in the bivariate analysis.

Oncology Nurses' Role in Promoting Patient Self-Advocacy.

Teaching patients with cancer the skill of self-advocacy shifts the focus of their cancer care onto what is important to them, leading to optimized patient-centered care. As oncology nurses, providing support to patients as they self-advocate to get their needs met fosters a collaborative relationship, creating an environment in which patients feel comfortable verbalizing their needs and concerns.

The Prevalence of Spiritual and Social Support Needs and Their Association With Postintensive Care Syndrome Symptoms Among Critical Illness Survivors Seen in a Post-ICU Follow-Up Clinic.

OBJECTIVES: Spiritual and social support may be key facilitators for critical illness recovery and are identified as high priority for research. Understanding the prevalence of spiritual and social support needs in critical illness survivors may guide development of targeted interventions for support, which, in turn, may improve critical illness survivor quality of life. To characterize unmet spiritual and social support needs in critical illness survivors approximately 1 month after hospital discharge and examine the association of these needs with postintensive care syndrome (PICS)-related symptom burden. DESIGN: Retrospective, cross-sectional study. SETTING: University-affiliated hospital in Pittsburgh, PA. PATIENTS: One hundred ninety-six consecutive adult critical illness survivors seen during an initial post-ICU clinic visit from June 2018 to March 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Patient-reported clinical outcome measures assessing spiritual and social support needs and PICS-related symptoms were extracted from the electronic health record. Patients had a median age of 61 (interquartile range [IQR], 51-68.5), and majority were male (55.1%) with a moderate comorbidity burden (Charlson comorbidity index median score, 3; IQR, 2-5). Social support and spiritual needs were prevalent. Of the 196 patients, over 50% reported unpreparedness/fearful for the future, half of patients reported not feeling in control of their care, and over one-third reported needing more support than their family, friends, or insurance can provide. Nearly 13% of respondents reported feeling abandoned or punished by God/not supported by their church/faith. Many patients reported overlapping PICS-related symptom domains (physical, psychologic, and cognitive). Univariate and multivariate analyses revealed associations between reported PICS-related symptoms and the presence of spiritual and social needs. CONCLUSIONS: Patients surviving critical illness experience significant social support and spiritual needs independent of commonly identified manifestations of PICS. These findings support the need for formal assessment and tailored interventions for social support and spiritual needs in critical illness survivors.

Developing and Field Testing BOLSTER: A Nurse-Led Care Management Intervention to Support Patients and Caregivers following Hospitalization for Gynecologic Cancer-Associated Peritoneal Carcinomatosis.

Introduction: Peritoneal carcinomatosis (PC) afflicts women with advanced gynecologic cancers. Patients with PC often require ostomies, gastric tubes, or catheters to palliate symptoms, yet patients and caregivers report feeling unprepared to manage these devices. The purpose of this study was to develop and field test the Building Out Lifelines for Safety, Trust, Empowerment, and Renewal (BOLSTER) intervention to support patients and their caregivers after hospitalization for PC. Materials and Methods: We adapted components of the Standard Nursing Intervention Protocol with stakeholders and topical experts. We developed educational content; built a smartphone application to assess patients' symptoms; and assessed preliminary feasibility and acceptability in two single-arm prepilot studies. Eligible participants were English-speaking adults hospitalized for gynecologic cancer-associated PC and their caregivers. Feasibility criteria were a ≥50% consent-to-approach ratio and ≥80% outcome measure completion. The acceptability criterion was ≥70% of participants recommending BOLSTER. Results: During the first prepilot, BOLSTER was a 10-week intervention. While 7/8 (87.5%) approached patients consented, we experienced high attrition to hospice. Less than half of patients (3/7) and caregivers (3/7) completed outcome measures. For the second prepilot, BOLSTER was a four-week intervention. All (7/7) approached patients consented. Two withdrew before participating in any study activity because they were "too overwhelmed." We excluded data from one caregiver who completed baseline measures with the patient's assistance. All remaining patients (5/5) and caregivers (4/4) completed outcome measures and recommended BOLSTER. Conclusion: BOLSTER is a technology-enhanced, nurse-led intervention that is feasible and acceptable to patients with gynecologic cancer-associated PC and their caregivers.

Exploring Resource-Sharing Behaviors for Finding Relevant Health Resources: Analysis of an Online Ovarian Cancer Community.

BACKGROUND: Online health communities (OHCs) provide patients and survivors of ovarian cancer (OvCa) and their caregivers with help beyond traditional support channels, such as health care providers and clinicians. OvCa OHCs promote connections and exchanges of information among users with similar experiences. Users often exchange information, which leads to the sharing of resources in the form of web links. Although OHCs are important platforms for health management, concerns exist regarding the quality and relevance of shared resources. Previous studies have examined different aspects of resource-sharing behaviors, such as the purpose of sharing, the type of shared resources, and peer user reactions to shared resources in OHCs to evaluate resource exchange scenarios. However, there is a paucity of research examining whether resource-sharing behaviors can ultimately determine the relevance of shared resources. OBJECTIVE: This study aimed to examine the association between OHC resource-sharing behaviors and the relevance of shared resources. We analyzed three aspects of resource-sharing behaviors: types of shared resources, purposes of sharing resources, and OHC users' reactions to shared resources. METHODS: Using a retrospective design, data were extracted from the National Ovarian Cancer Coalition discussion forum. The relevance of a resource was classified into three levels: relevant, partially relevant, and not relevant. Resource-sharing behaviors were identified through manual content analysis. A significance test was performed to determine the association between resource relevance and resource-sharing behaviors. RESULTS: Approximately 48.3% (85/176) of the shared resources were identified as relevant, 29.5% (52/176) as partially relevant, and 22.2% (39/176) as irrelevant. The study established a significant association between the types of shared resources (χ218=33.2; P<.001) and resource relevance (through chi-square tests of independence). Among the types of shared resources, health consumer materials such as health news (P<.001) and health organizations (P=.02) exhibited significantly more relevant resources. Patient educational materials (P<.001) and patient-generated resources (P=.01) were more significantly associated with partially relevant and irrelevant resources, respectively. Expert health materials, including academic literature, were only shared a few times but had significantly (P<.001) more relevant resources. A significant association (χ210=22.9; P<.001) was also established between the purpose of resource sharing and overall resource relevance. Resources shared with the purpose of providing additional readings (P=.01) and pointing to resources (P=.03) had significantly more relevant resources, whereas subjects for discussion and staying connected did not include any relevant shared resources. CONCLUSIONS: The associations found between resource-sharing behaviors and the relevance of these resources can help in collecting relevant resources, along with the corresponding information needs from OvCa OHCs, on a large scale through automation. The results from this study can be leveraged to prioritize the resources required by survivors of OvCa and their caregivers, as well as to automate the search for relevant shared resources in OvCa OHCs.

Effects of the WRITE Symptoms Interventions on Symptoms and Quality of Life Among Patients With Recurrent Ovarian Cancers: An NRG Oncology/GOG Study (GOG-0259).

PURPOSE: GOG-259 was a 3-arm randomized controlled trial of two web-based symptom management interventions for patients with recurrent ovarian cancer. Primary aims were to compare the efficacy of the nurse-guided (Nurse-WRITE) and self-directed (SD-WRITE) interventions to Enhanced Usual Care (EUC) in improving symptoms (burden and controllability) and quality of life (QOL). METHODS: Patients with recurrent or persistent ovarian, fallopian, or primary peritoneal cancer with 3+ symptoms were eligible for the study. Participants completed baseline (BL) surveys (symptom burden and controllability and QOL) before random assignment. WRITE interventions lasted 8 weeks to develop symptom management plans for three target symptoms. All women received EUC: monthly online symptom assessment with provider reports; online resources; and every 2-week e-mails. Outcomes were evaluated at 8 and 12 weeks after BL. Repeated-measures modeling with linear contrasts evaluated group by time effects on symptom burden, controllability, and QOL, controlling for key covariates. RESULTS: Participants (N = 497) reported mean age of 59.3 ± 9.2 years. At BL, 84% were receiving chemotherapy and reported a mean of 14.2 ± 4.9 concurrent symptoms, most commonly fatigue, constipation, and peripheral neuropathy. Symptom burden and QOL improved significantly over time (P < .001) for all three groups. A group by time interaction (P < .001) for symptom controllability was noted whereby both WRITE intervention groups had similar improvements from BL to 8 and 12 weeks, whereas EUC did not improve over time. CONCLUSION: Both WRITE Intervention groups showed significantly greater improvements in symptom controllability from BL to 8 and BL to 12 weeks compared with EUC. There were no significant differences between Nurse-WRITE and SD-WRITE. SD-WRITE has potential as a scalable intervention for a future implementation study.