Research autopsy programmes in oncology: shared experience from 14 centres across the world.

While there is a great clinical need to understand the biology of metastatic cancer in order to treat it more effectively, research is hampered by limited sample availability. Research autopsy programmes can crucially advance the field through synchronous, extensive, and high-volume sample collection. However, it remains an underused strategy in translational research. Via an extensive questionnaire, we collected information on the study design, enrolment strategy, study conduct, sample and data management, and challenges and opportunities of research autopsy programmes in oncology worldwide. Fourteen programmes participated in this study. Eight programmes operated 24 h/7 days, resulting in a lower median postmortem interval (time between death and start of the autopsy, 4 h) compared with those operating during working hours (9 h). Most programmes (n = 10) succeeded in collecting all samples within a median of 12 h after death. A large number of tumour sites were sampled during each autopsy (median 15.5 per patient). The median number of samples collected per patient was 58, including different processing methods for tumour samples but also non-tumour tissues and liquid biopsies. Unique biological insights derived from these samples included metastatic progression, treatment resistance, disease heterogeneity, tumour dormancy, interactions with the tumour micro-environment, and tumour representation in liquid biopsies. Tumour patient-derived xenograft (PDX) or organoid (PDO) models were additionally established, allowing for drug discovery and treatment sensitivity assays. Apart from the opportunities and achievements, we also present the challenges related with postmortem sample collections and strategies to overcome them, based on the shared experience of these 14 programmes. Through this work, we hope to increase the transparency of postmortem tissue donation, to encourage and aid the creation of new programmes, and to foster collaborations on these unique sample collections. © 2024 The Authors. The Journal of Pathology published by John Wiley & Sons Ltd on behalf of The Pathological Society of Great Britain and Ireland.

Health-related quality of life over chemotherapy course among individuals with early-stage breast cancer: the association of social determinants of health and neighborhood socioeconomic disadvantage.

PURPOSE: This study aimed to examine relationships between health-related quality of life (HRQOL), social determinants of health, and neighborhood socioeconomic disadvantage in individuals with early-stage breast cancer (ESBC) during chemotherapy. METHODS: This is a longitudinal study that recruited Black and White women with ESBC receiving chemotherapy. Participants completed questionnaires recording their sociodemographic information at baseline and the Functional Assessment of Cancer Therapy-General (FACT-G) to report their HRQOL before each chemotherapy cycle. Linear mixed modeling was employed to examine the associations between FACT-G scores, self-reported race, and area deprivation index (ADI) before and at the last chemotherapy cycle, with the duration of chemotherapy treatment as a covariate. RESULTS: A total of 84 Black and 146 White women with ESBC completed the surveys. Linear mixed modeling results suggested that women with ESBC who reported being Black experienced significantly worse physical well-being than those who reported being White throughout chemotherapy, with a 0.22-point lower average (p = 0.02). Both Black and White women with ESBC experienced decreased functional well-being over the chemotherapy, and Black women consistently reported lower scores than White women, with the change in functional well-being over time differing between racial groups (p = 0.03). Participants' ADI national percentiles were not significantly associated with their HRQOL throughout chemotherapy. CONCLUSIONS: These findings underscore possible racial differences in some dimensions of HRQOL during chemotherapy among women with ESBC. Future research should consider further assessing life stressors and past experiences of discrimination and racism that may contribute to these disparities and guide proactive interventions.

Neighborhood Deprivation and Symptoms, Psychological Distress, and Quality of Life Among Head and Neck Cancer Survivors.

Importance: Socioeconomic deprivation is associated with increased risk of poor health and quality-of-life (QOL) outcomes in head and neck cancer (HNC) survivors. However, there are few data on how neighborhood deprivation affects patient-reported outcome measures (PROMs) in HNC survivors. Objective: To investigate whether neighborhood socioeconomic deprivation is associated with symptom burden, psychological distress, and QOL among HNC survivors. Design, Setting, and Participants: This cross-sectional study used prospectively collected data from patients seen in a university-affiliated multidisciplinary HNC survivorship clinic between September 2018 and September 2021 who received radiotherapy for squamous cell carcinoma of the oral cavity, oropharynx, and larynx or hypopharynx. Exposure: Neighborhood socioeconomic deprivation, measured using the Area Deprivation Index (ADI). Main Outcomes and Measures: The PROMs pertaining to symptom burden and severity of psychological distress were measured using the Neck Disability Index, Insomnia Severity Index, the 10-item Eating Assessment Tool, the Generalized Anxiety Disorder 7-item scale, and the 8-item Patient Health Questionnaire. Physical and social-emotional QOL were obtained using the University of Washington QOL questionnaire. Multivariable linear regression analysis adjusting for individual-level sociodemographic, comorbidity, and treatment characteristics investigated the association between ADI and PROMs. A subgroup analysis was performed to compare the lowest (most affluent areas: ADI, 0%-20%) and highest (most deprived areas: ADI, 80%-100%) ADI quintiles. Results: A total of 277 patients were included in the final analysis (mean [SD] age, 64.18 [9.60] years; 215 [77.6%] male). Cancer sites were the oral cavity (52 [18.8%]), oropharyngeal area (171 [61.7%]), and larynx or hypopharynx (54 [19.5%]). Multivariable analysis showed that for every 1-point increase in ADI, social-emotional QOL changed by -0.14 points (95% CI, -0.24 to -0.05 points), anxiety increased by 0.03 points (95% CI, 0.01-0.06 points), and neck disability worsened by 0.05 points (95% CI, 0.01-0.10 points). Compared with patients in the most affluent areas, those in the most deprived areas had significantly lower physical (-15.89 points; 95% CI, -25.96 to -2.31 points; Cohen d = -0.83) and social-emotional (-13.57 points; 95% CI, -22.79 to -3.49 points; Cohen d = -0.69) QOL and higher depression (2.60 points; 95% CI, 0.21-4.40 points; Cohen d = 0.52), anxiety (3.12 points; 95% CI, 1.56-4.66 points; Cohen d = 0.61), insomnia (3.55 points; 95% CI, 0.33-6.41 points; Cohen d = 0.54), and neck disability (5.65 points; 95% CI, 1.66-9.55 points; Cohen d = 0.66) scores. Conclusions and Relevance: In this cross-sectional study, a higher ADI score was associated with higher risk of increased psychological distress, higher symptom burden, and decreased QOL after treatment among HNC survivors. These findings suggest that proactive, patient-centered interventions are needed to address these disparities.

I'm still me, I'm still a person: war metaphor use and meaning making in women with metastatic breast cancer.

PURPOSE: The war metaphor is one strategy used frequently in breast cancer to inspire individuals in a "fight" against cancer and assist patients in navigating their illness experience. Despite prominent use, the emotional impact of this language has not been examined in the context of meaning making among women with metastatic breast cancer (MBC). METHODS: This study involved a semi-structured interview considering the war metaphor's impact on women's illness experience with MBC. Participants (n = 22) had been diagnosed with MBC for at least 6 months or following 1 disease progression and were undergoing treatment at an NCI-designated cancer center in Western Pennsylvania at the time of interview. Each participant underwent an individual interview exploring the war metaphor's impact on illness experience. Qualitative thematic analysis was performed to assess feelings about the war metaphor and emotional response to the lived experience of cancer. RESULTS: Two themes were identified surrounding metaphor use and participants' experiences with meaning making in cancer. First, women with MBC perceive the diagnosis as an "unfair fight" due to its incurable nature. Second, patients use alternative language of "living life" and communicate resistance to being defined by their cancer diagnosis. CONCLUSION: War metaphors are one collection of terminology people use to understand their diagnosis. However, their use may apply pressure to prioritize positivity in the face of diagnosis and treatment, in a unique clinical context where this may not be adaptive. These findings affirm a need to consider patients' lived experiences to best facilitate psychological adjustment to illness.

Hope and illness expectations: A cross-sectional study in patients with advanced cancer.

BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.

Economic Hardship and Associated Factors of Women With Early-Stage Breast Cancer Prior to Chemotherapy Initiation.

INTRODUCTION: Economic hardship (EH) can negatively influence cancer outcomes. Little is known about the factors that are associated with higher levels of EH among patients with breast cancer (BC). This paper describes EH in women with early-stage BC prior to or at their first chemotherapy treatment (baseline) and explores whether there are differences by race, area deprivation, stress, symptom distress, and social support. PATIENTS AND METHODS: A descriptive comparative/correlational design was employed using baseline data of a multisite, longitudinal, multimethod study comparing the symptom experience and management prior to prescribed chemotherapy for women with early-stage BC. Participants completed measures for EH, perceived stress, symptom distress, and social support. Race was measured by self-report. Area deprivation indices (ADI) measuring neighborhood economic factors were calculated from publicly available websites. RESULTS: Participants (N = 248; age = 52.9 ± 12.3 years) were 62% White and 38% Black, 54% partnered, and 98% insured. Compared to White patients, Black patients reported higher (worse) EH (1.2 ± 3.0 vs. -0.7 ± 2.4), lived in areas of greater deprivation (80.1 ± 2.1 vs. 50.5 ± 23.5),and were more likely to report inadequate household income (Black: 30.5%; White: 11.1%). Adjusting for race and age, being Black (P< .001), living in an area of greater deprivation (P = .049), higher perceived stress (P = .008), lower perceived appraisal (P = .040), and less tangible support (P < .001) contributed to greater EH. Worse symptom distress trended toward greater EH (P = .07). CONCLUSIONS: This study emphasizes the importance of incorporating baseline holistic assessment to identify patients most likely to experience EH during early-stage BC treatment.

The Effect of Race and Area Deprivation on Symptom Profiles over the Course of Early-Stage Breast Cancer.

Purpose: This study compared common symptoms (fatigue, pain), overall physical functioning and changes over time between Black and White women receiving early-stage breast cancer (ESBC) chemotherapy. Methods: A longitudinal, repeated measures comparative design was employed. Time points of symptom measurement (PROMIS domains) at baseline, mid and end point were adjusted as per patient chemotherapy schedule. Analyses: Linear mixed models were applied. Results: There were 147 patients, 36% Black 64% White (54±12 years) recommended to receive early-stage breast cancer chemotherapy with adequate data for symptom analysis. Pain: Main effect of race was significant (F(1, 390) = 29.43, p<.001) for pain with Black patients experiencing significantly higher pain scores compared to White patients at pretherapy (Mean Difference; MD=3.7, p=.034), midpoint (MD=5.8, p=.002), and endpoint (MD=7.8, p<.001). Fatigue: Fatigue significantly increased (deteriorated) at endpoint (MDT1-T3= 8.7, p<.001) for Black patients. Among White patients, fatigue significantly increased at midpoint (MDT1-T2= 5.7) and at endpoint (MDT1-T3=10.1, p<.001; MDT2-T3=4.3, p= .017). Physical function: Black patients had significantly lower physical function scores compared to White patients at midpoint (MD=4.0, p=.027). Physical function decreased by endpoint in Black (MDT1-T3=7.8, p<.001), and White patients (MDT1-T3=7.7, p<.001). Conclusion: Symptom burden significantly increased over the course of chemotherapy for all patients. Scores for pain and physical function were higher overall for Black patients and deteriorated at a greater rate for Black vs. White women over the course of chemotherapy. This assessment holds implication for proactive assessment and mitigation strategies.

Stakeholder perspectives on six identified interpersonal communication components of patient navigation in breast cancer care.

PURPOSE: Although identified as a key competency domain and a needed area of professional development, interpersonal communication in breast cancer care patient navigation is understudied. Moreover, the patient-navigator relationship may be influenced by the interpersonal communication skills and behaviors of the patient navigator. This paper reports on the interpretation step of a concept mapping study, where key stakeholders shared their perspectives on six identified interpersonal communication components of breast cancer care patient navigation. METHODS: This study utilized concept mapping, a community-engaged mixed method approach. After conducting brainstorming, sorting, and concept mapping analysis, a six-cluster concept map of interpersonal communication in breast cancer care patient navigation was identified. Interpretation sessions with each participant group (patients, patient navigators, administrators) allowed both naming and more in-depth exploration of the six clusters. The sessions were led by a facilitator, the PI, and were audio recorded and transcribed. RESULTS: Six 2-h interpretation sessions were conducted with 21 participants, including patients with breast cancer, breast cancer patient navigators (lay or medically trained), and patient navigation administrators from Western Pennsylvania. Through a group consensus process, the six clusters were named. Participants identified that all six identified components were essential to patient navigation, but the ability to build patient-centered trust and relationships and maintain professional communication were the most impactful components of the patient-navigator relationship. CONCLUSION: These findings validate the importance of interpersonal skills and behaviors of patient navigators in breast cancer care. These findings can inform the patient navigation role description, competencies, and the development of curriculum for training and metrics for evaluation.

Effects of socioeconomic status and race on survival and treatment in metastatic breast cancer.

Race and socioeconomic factors affect outcomes in breast cancer. We aimed to assess the effect of race and neighborhood socioeconomic status (SES) on overall survival and treatment patterns in patients with metastatic breast cancer (MBC). This is a retrospective cohort study involving patients (N = 1246) with distant breast cancer metastases diagnosed at UPMC Magee Women's Breast Cancer Clinic from 2000-2017. Overall survival and treatment patterns were compared between races (Blacks and whites) and SES groups (defined using Area Deprivation Index). Low SES, but not tumor characteristics, was associated with Black race (P < 0.001) in the study population. Low SES (Median [Interquartile Range, IQR] survival 2.3[2.2-2.5] years vs high SES 2.7[2.5-3.1] years, P = 0.01) and Black race (Median [IQR] survival 1.8[1.3-2.3] years, vs white 2.5[2.3-2.7] years P = 0.008) separately were associated with worse overall survival in patients with MBC. In the Cox Proportional Hazard model with SES, race, age, subtype, number of metastases, visceral metastasis, and year of diagnosis as covariates, low SES (Hazard ratio 1.19[1.04-1.35], P = 0.01), but not Black race (Hazard ratio 1.19[0.96-1.49], P = 0.12), independently predicted overall survival in MBC. Moreover, patients from low SES neighborhoods and Black race received fewer lines of chemotherapy than high SES and whites. In conclusion, low neighborhood SES is associated with worse outcomes in patients with MBC. Poor outcomes in Black patients with MBC, at least in part is driven by socioeconomic factors. Future studies should delineate the interplay between neighborhood SES, race, and their effects on tumor biology in MBC.

A Scoping Review on Work Experiences of Nurses After Being Diagnosed With Cancer.

PROBLEM IDENTIFICATION: To map key concepts underpinning work-related studies about nurses with cancer and identify knowledge gaps. LITERATURE REVIEW: A search was conducted in the PubMed®, CINAHL®, and PsycINFO® databases for articles about nurses with cancer and work-related topics published through March 2023. DATA EVALUATION: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews Checklist was used to report results, and the JBI critical appraisal tools were used to assess the quality of studies. Eleven articles were included. SYNTHESIS: The following four critical concepts were identified: role adjustments at work, cancer impacts on work, organizational support, and translating insights gained from cancer experience into work. Research gaps identified by the scoping review were a lack of theoretical or conceptual frameworks, lack of syntheses of main ideas, and lack of clear data about participants' socioeconomic status across studies. IMPLICATIONS FOR RESEARCH: Minimal research exists to map predictors, outcomes, or intervention targets to guide organizational strategies to support nurses' retention in the nursing workforce. A guiding framework, recruitment of diverse nurses, and focus on the four critical concepts identified in this scoping review are suggested for future research.

Impact of Race and Area Deprivation on Triple-Negative Metastatic Breast Cancer Outcomes.

OBJECTIVES: To describe area deprivation, anxiety, depression, relative dose intensity of first-line metastatic breast cancer (MBC) treatment, and survival in Black and White women who had died from triple-negative MBC, including interaction analysis. SAMPLE & SETTING: This cohort study drew from a database of women who had died from MBC (N = 53). METHODS & VARIABLES: Descriptive statistics, independent t tests, analysis of variance, and Mann-Whitney U tests were used, and effect sizes were calculated. RESULTS: Compared with White women, Black women reported higher anxiety and depression at MBC baseline. Black women living in areas of higher deprivation experienced shorter overall survival than White women living in similar areas (9.9 months versus 24.6 months). These results were not statistically significant, likely because of a small sample size, but were clinically meaningful. IMPLICATIONS FOR NURSING: Black and low-income women with breast cancer experience inferior survival as compared with White and higher-income women. Newer explanatory models for racial disparity in cancer outcomes include the assessment of neighborhood deprivation. White women may be less affected by their neighborhood, even when living in areas of greater deprivation influencing cancer outcomes. This merits further exploration.

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.

Impact of the COVID-19 pandemic on cancer patients in western Pennsylvania: rural-urban disparities.

PURPOSE: Disparities in cancer care persist between patients living in rural versus urban areas. The COVID-19 pandemic may have impacted concerns related to care and personal health differently in rural cancer patients. Using survey data collected from cancer patients in western Pennsylvania, we examined pandemic-related distress, concerns related to cancer care, impact on personal health, and the extent to which these differed by urban-rural residence. METHODS: Patients filled out an initial survey in August-December 2020; a second survey was completed in March 2021. The following patient concerns related to the pandemic were evaluated: threat of COVID-19 to their health, pandemic-related distress, perceptions of cancer care, and vaccine hesitancy. Multivariable logistic regression models were used to examine relationships between these outcomes and urban-rural residence as well as patient-related factors, including anxiety symptoms and social support. RESULTS: The study sample included 1,980 patients, 17% resided in rural areas. COVID-19 represented a major or catastrophic threat to personal health for 39.7% of rural and 49.0% of urban patients (p = 0.0017). Patients with high general anxiety were 10-times more likely to experience pandemic-related distress (p < 0.001). In the follow-up survey (n = 983), vaccine hesitancy was twice as prevalent among rural patients compared to urban (p = 0.012). CONCLUSIONS: The extent to which perceptions of the threat of COVD-19 to personal health and vaccine hesitancy exacerbates rural-urban disparities in cancer care and prognosis warrants further study. Cancer patients may be vulnerable to heightened anxiety and distress triggered by the pandemic.

Primary Palliative Care Improves Uptake of Advance Care Planning Among Patients With Advanced Cancers.

BACKGROUND: Palliative care specialists are experts in conducting advance care planning (ACP) but are a limited resource. Oncology nurses often have special relationships with their patients and thus may be poised to provide primary palliative care. We sought to determine the impact of a nurse-led primary palliative care intervention on ACP uptake among patients with advanced cancer. METHODS: We performed a secondary analysis of a cluster randomized controlled trial examining the impact of nurse-based primary palliative care. In the parent trial, patients with advanced cancer received either monthly primary palliative care visits with trained nurses within their cancer center or standard care. Nurses in the intervention arm received special training in ACP. ACP uptake was assessed at enrollment and 3 months later evaluating (1) whether an end-of-life conversation (EOLC) occurred with one's oncologist, and (2) completion of an advance directive (AD). Multivariable logistic regression tested differences in ACP uptake by treatment arm adjusted for age, religious importance, education, time with current oncologist, and performance status. RESULTS: Of 672 patients enrolled, 182/336 (54%) patients in the intervention arm and 196/336 (58%) in the standard care arm lacked an EOLC at baseline and completed the 3-month assessment. Of those, 82/182 (45.1%) patients in the intervention arm and 29/196 (14.8%) in the standard care arm reported having an EOLC at 3 months (adjusted odds ratio, 5.28; 95% CI, 3.10-8.97; P<.001). Similarly, 111/336 (33%) patients in the intervention arm and 105/336 (31%) in the standard care arm lacked an AD at baseline and completed the 3-month assessment. Of those, 48/111 (43.2%) patients in the intervention arm and 19/105 (18.1%) in the standard care arm completed an AD over the study period (adjusted odds ratio, 3.68; 95% CI, 1.89-7.16; P<.001). CONCLUSIONS: Nurse-led primary palliative care increased ACP uptake among patients with advanced cancer. Training oncology nurses embedded within community cancer centers to provide primary palliative care may help improve ACP access.

Racial Differences in Breast Cancer Therapeutic Toxicity: Implications for Practice.

Disparities in treatment intensity can contribute to racial disparities in overall breast cancer survival. A natural extension of measuring racial disparities in treatment intensity is consideration of the distribution of treatment toxicities, symptoms, and distress that lead to chemotherapy dose reductions, holds or early termination. There is growing evidence that therapeutic toxicity during early-stage breast cancer treatment may be greater among Black women than White. Important components of symptom management involve the communication of symptoms, the self-care abilities of the patient, the patient's perception of the clinical encounter, and the patient centeredness of the clinical encounter. Racial differences in the symptom reporting, the clinical "reception" and response to symptoms, the prescribed management, and the patient adherence to symptom management requires further investigation. Further research must also consider the structural inequities, as well as institutional and interpersonal racism that contribute to racial differences in cancer symptom burden leading to potential decreases in dose intensity of potentially life-saving early cancer treatment. See related article by Hu et al., p. 167.

"I was never one of those people who just jumped right in for me": patient perspectives on self-advocacy training for women with advanced cancer.

PURPOSE: Patients with advanced cancer experience many complicated situations that can make self-advocacy (defined as the ability speak up for yourself in the face of a challenge) difficult. Few self-advocacy interventions exist, and most are atheoretical with minimal patient engagement. The purpose of this study is to describe participant perspectives of a novel, self-advocacy serious game intervention called Strong Together. METHODS: This was a qualitative cross-sectional descriptive study among women receiving cancer care at an academic cancer center within 3 months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one semi-structured interviews 3-months post Strong Together and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze transcripts and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants' experiences engaging with the Strong Together intervention. RESULTS: Participants (N = 40) reported that the Strong Together intervention was acceptable, noting that it was realistic and reflective of their personal experiences. Overarching themes included seeing myself in most scenarios and wanting more content; giving me the go ahead to expect more; offering ideas for how to stand up for myself; reinforcing what I am already doing; and reminding me of what I have. Participants suggested adding additional content including diverse characters. CONCLUSION: This study demonstrated that women with advanced cancer were receptive to a self-advocacy skills-building intervention. Future research should explore the mechanisms linking serious games to learning and health outcomes.

Examining Caregiver Outcomes in the CONNECT Intervention for Patients With Advanced Cancer.

CONTEXT: Palliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood. OBJECTIVES: To determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer. METHODS: In this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0-48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0-21; HADS-D, range 0-21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0-189). RESULTS: We enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07-0.29, P = 0.90), depression (adjusted mean difference -0.22, 95% CI -0.97-0.55, P = 0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25-1.43, P = 0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95-17.77, P = 0.030). CONCLUSION: Caregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.

Factors associated with ductal carcinoma in situ (DCIS) treatment patterns and patient-reported outcomes across a large integrated health network.

PURPOSE: To examine associations between ductal carcinoma in situ (DCIS) patients' characteristics, treating locations and DCIS treatments received and to pilot assessing quality-of-life (QoL) values among DCIS patients with diverse backgrounds. METHODS: We performed a retrospective tumor registry review of all patients diagnosed and treated with DCIS from 2018 to 2019 in the UPMC-integrated network throughout central and western Pennsylvania. Demographics, clinical information, and administered treatments were compiled from tumor registry records. We categorized contextual factors such as different hospital setting (academic vs. community), socioeconomic status based on the neighborhood deprivation index (NDI) as well as age and race. QoL survey was administered to DCIS patients with diverse backgrounds via QoL questionnaire breast cancer module 23 and qualitative assessment questions. RESULTS: A total of 912 patients were reviewed. There were no treatment differences noted for age, race, or NDI. Mastectomy rate was higher in academic sites than community sites (29 vs. 20.4%; p = 0.0045), while hormone therapy (HT) utilization rate was higher in community sites (74 vs. 62%; p = 0.0012). QoL survey response rate was 32%. Only HT side effects negatively affected in QoL scores and there was no significant difference in QoL domains and decision-making process between races, age, NDI, treatment groups, and treatment locations. CONCLUSION: Our integrated health network did not show chronically noted disparities arising from social determinates of health for DCIS treatments by implementing clinical pathways and system-wide peer review. Also, we demonstrated feasibility in collecting QoL for DCIS women with diverse backgrounds and different socioeconomic statuses.

Testing the effects of the Strong Together self-advocacy serious game among women with advanced cancer: Protocol for the STRONG randomized clinical trial.

BACKGROUND: Women with advanced cancer experience significant barriers to achieving high-quality care and maximizing their physical and emotional health. Our novel serious game, Strong Together, aims to teach women with advanced cancer self-advocacy skills needed to improve their symptom burden, quality of life, and patient-centered care. METHODS: This is a single-center, multi-site randomized clinical trial of the Strong Together intervention among 336 women within three months of an advanced breast or gynecologic cancer diagnosis. Randomization occurs to the 3-month Strong Together serious game or enhanced care as usual group. The aims are to: (1) evaluate the effects of the intervention on patient self-advocacy (primary outcome); (2) evaluate the effects of the intervention on quality of life, symptom burden, and patient-centered care (secondary outcomes); and (3) evaluate the behavioral and game mechanisms that influence the efficacy of the intervention. ELIGIBILITY CRITERIA: female, age ≥ 18 years; diagnosis of advanced breast or gynecologic cancer within the past 3 months; Eastern Cooperative Oncology Group score of 0-2; English literacy; and ≥ 6-month life expectancy. Patient-reported outcome measures are collected at baseline, 3-months, and 6-months. CONCLUSION: This protocol is the first large-scale intervention aimed at promoting self-advocacy in women with advanced cancer. Understanding the ability of serious games to impact patient outcomes provides critical information for researchers, clinicians, and stakeholders aiming to improve patient-centered care. TRIAL REGISTRATION: NCT04813276.

Symptom Burden and Shared Care Planning in an Oncology Nurse-Led Primary Palliative Care Intervention (CONNECT) for Patients with Advanced Cancer.

Purpose: Primary palliative care (PPC) interventions are needed to address unmet symptom needs within standard oncology care. We designed an oncology nurse-led PPC intervention using shared care planning to facilitate patient engagement. This analysis examines the prevalence and severity of symptoms reported by patients and how symptoms were addressed on shared care plans (SCPs). Methods: Secondary analysis of a cluster randomized PPC intervention trial. Adult patients with metastatic solid tumors whose oncologist "would not be surprised if the patient died within a year" were included. Twenty-three oncology nurses received PPC training and conducted up to three monthly visits with patients. Symptom prevalence and severity were assessed before each visit using the Edmonton Symptom Assessment Scale (ESAS). Nurses collaboratively developed treatment strategies with patients, targeting the most bothersome symptoms for improvement. Results: Among 571 nurse-led PPC visits with 235 patients, the most prevalent and severe symptoms were tiredness (reported at 86% of visits; ESAS ≥4 in 55% of visits), low sense of wellbeing (78%; ESAS ≥4 in 38%), and poor appetite (69%; ESAS ≥4 in 42%). Moderately severe symptoms were addressed on SCPs ranging from 4% (drowsiness) to 35% (tiredness) of the time. Symptom management plans developed by PPC-trained oncology nurses primarily focused on nonpharmaceutical interventions (70%) compared with pharmaceutical interventions (30%). Conclusion: The symptoms that patients report most frequently and as most severe on SCPs were addressed less frequently than expected. Further research is needed to understand how PPC interventions can be designed to more effectively target and improve bothersome symptoms for patients with advanced cancer. Clinical Trial Registration: ClinicalTrials.gov identifier: NCT02712229.