Implementing a Palliative Care Junior Faculty Visiting Professor Program: Pearls and Pitfalls.

MOTIVATION: Palliative Care (PC) is a small, relatively young interprofessional sub-specialty; hence mentorship for early-career research faculty is widely dispersed across schools and universities. We developed the Junior Visiting Professor Program (JVPP) to provide junior faculty in palliative care (PC) with opportunities to meet multidisciplinary PC researchers from other institutions and to advance their research through networking and presenting their work. We describe how we designed and implemented the program, and we report on the first cohort of participants. METHODS: We invited PC research groups from US schools of medicine and nursing to participate in this 5-year interprofessional exchange program by nominating junior faculty and serving as hosts. We matched nominees to host institutions based on nominee training experiences, nominee research interests, and host institution faculty expertise. In addition, we provided logistical guidance on visit planning. Post-visit, we surveyed both hosts and junior visiting professors (JVPs) regarding their satisfaction, perceived value, and suggestions regarding the program. RESULTS: We recruited 13 schools to participate and matched 10 nominees to host institutions in our first year. Nine JVPs completed their visit; 6 JVPs and 8 host faculty/staff responded to the post-visit survey. Overall, JVPs were highly satisfied with their matches and the visiting professor experience. Hosts were generally satisfied with their matches and believed the program to be mutually beneficial. The most frequent suggestion was for greater administrative support to plan visits. CONCLUSIONS: Structured, well-supported opportunities for networking across institutions is beneficial for emerging PC researchers and for building PC research capacity.

A Qualitative Exploration of Self-Advocacy Experiences of Black Women in the Perinatal Period: Who Is Listening?

INTRODUCTION: Black women face poor maternal health outcomes including being over 3 times more likely to die from pregnancy complications than White women. Yet the lived experience of how these women self-advocate has not been clearly explored. The goal of this cross-sectional qualitative study was to describe the lived experiences of Black women advocating for their needs and priorities during the perinatal period. METHODS: Between January and October of 2022, we recruited Black women from obstetric clinics, research registries, and community advocacy groups who were either in their third trimester of pregnancy or within a year postpartum. Participants completed one-on-one interviews describing their experiences of self-advocacy. These data were analyzed using descriptive content analysis approaches that summarized women's experiences by iteratively creating major themes and subthemes that encapsulate their self-advocacy descriptions. RESULTS: Fifteen Black women completed interviews. Major themes and subthemes describing women's experience of self-advocacy were the following: (1) carrying a burden with subthemes of having to be good and easy, not trusting health care information and providers, and being dismissed; (2) building comfort with health care providers with subthemes of trusting I have a good provider, comfort in knowing they understand, and wanting low-touch, high-concern care; and (3) advocating for my child and myself when I need to with subthemes of going with the flow, becoming informed, pushing to ask questions, and balancing being proactive and pushy. DISCUSSION: Women reported self-advocating mainly due to experiences related to the burdens associated with not trusting providers and health care information. These findings provide clarity to how women carefully balance between ensuring their health is taken seriously while not jeopardizing their health or that of their newborn. This study offers promising directions to support Black women in advocating for their perinatal health care needs and values.

Associations of Health Care Utilization and Therapeutic Alliance in Patients with Advanced Cancer.

Introduction: Therapeutic alliance (TA), or the extent to which patients feel a sense of caring and trust with their physician, may have an impact on health care utilization. We sought to determine if TA is associated with: (1) emergency department (ED) visits within 30 days of death and (2) hospice enrollment. Methods and Materials: This is a secondary analysis of data from a randomized clinical trial. We used restricted cubic splines to assess the relationship between TA scores and health care utilization. Results: Six hundred seventy-two patients were enrolled in the study, with 331 (49.3%) dying within 12 months. Patients with higher TA were less likely to have an ED visit in the last 30 days of life, but there was no evidence of a relationship between TA and enrollment in hospice. Conclusions: Higher TA was associated with decreased ED visits within 30 days of death. There was no association between TA and rates of hospice enrollment. Clinical Registration Number: NCT02712229.

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.

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.

Describing Self-Advocacy in Underrepresented Women With Advanced Cancer.

PURPOSE: To describe the self-advocacy experiences of women from underrepresented groups who have advanced breast or gynecologic cancer. PARTICIPANTS & SETTING: To be eligible for the study, participants had to self-identify as vulnerable, which was defined as a member of a group considered at risk for poor cancer outcomes and underrepresented in clinical research. METHODOLOGIC APPROACH: This descriptive, longitudinal, qualitative study consisted of one-on-one interviews of women within three months of an advanced breast or gynecologic cancer diagnosis. FINDINGS: 10 participants completed 25 interviews. The average age of participants was 60.2 years (range = 38-75 years). Three major themes emerged: (a) speaking up and speaking out, (b) interacting with the healthcare team, and (c) relying on support from others. IMPLICATIONS FOR NURSING: Women with advanced cancer who are from underrepresented groups self-advocated in unique ways, learning over time the importance of how to communicate their needs and manage their healthcare team. Future research should incorporate these findings into tailored self-advocacy interventions.

Neurodiversity and National Security: How to Tackle National Security Challenges with a Wider Range of Cognitive Talents.

National security organizations need highly skilled and intellectually creative individuals who are eager to apply their talents to address the nation's most pressing challenges. In public and private discussions, officials and experts addressed the need for neurodiversity in the national security community. They described missions that are too important and too difficult to be left to those who use their brains only in typical ways. Neurodivergent is an umbrella term that covers a variety of cognitive diagnoses, including (but not exclusive to) autism spectrum disorder, attention deficit disorder (ADD) and attention-deficit/hyperactivity disorder (ADHD), dyslexia, dyscalculia, and Tourette's syndrome. Neurodivergent individuals are already part of the national security workforce. The purpose of this study is to understand the benefits that people with neurodivergence bring to national security; the challenges in recruiting, working with, and managing a neurodiverse workforce; and the barriers in national security workplaces that prevent agencies from realizing the full benefits of neurodiversity. To carry out this research, the authors conducted a review of primary, secondary, and commercial literature; they conducted semistructured interviews and held discussions with government officials, researchers and advocates for the interests of neurodivergent populations, and representatives from large organizations that have neurodiversity employment programs; and they synthesized findings from across these tasks to describe the complex landscape for neurodiversity in large organizations in general and in national security specifically.

Longitudinal Analysis of Caregiver Burden in Head and Neck Cancer.

Importance: Despite the critical role of caregivers in head and neck cancer (HNC), there is limited literature on caregiver burden (CGB) and its evolution over treatment. Research is needed to address evidence gaps that exist in understanding the causal pathways between caregiving and treatment outcomes. Objective: To evaluate the prevalence of and identify risk factors for CGB in HNC survivorship. Design, Setting, and Participants: This longitudinal prospective cohort study took place at the University of Pittsburgh Medical Center. Dyads of treatment-naive patients with HNC and their caregivers were recruited between October 2019 and December 2020. Eligible patient-caregiver dyads were 18 years or older and fluent in English. Patients undergoing definitive treatment identified a caregiver as the primary, nonprofessional, nonpaid person who provided the most assistance to them. Among 100 eligible dyadic participants, 2 caregivers declined participation, resulting in 96 enrolled participants. Data were analyzed from September 2021 through October 2022. Main Outcomes and Measures: Participants were surveyed at diagnosis, 3 months postdiagnosis, and 6 months postdiagnosis. Caregiver burden was evaluated with the 19-item Social Support Survey (scored 0-100, with higher scores indicating more support), Caregiver Reaction Assessment (CRA; scored 0-5, with higher scores on 4 subscales [disrupted schedule, financial problems, lack of family support, and health problems] indicating negative reactions, and higher scores on the fifth subscale [self-esteem] indicating favorable influence); and 3-item Loneliness Scale (scored 3-9, with higher scores indicating greater loneliness). Patient health-related quality of life was assessed using the University of Washington Quality of Life scale (UW-QOL; scored 0-100, with higher scores indicating better QOL). Results: Of the 96 enrolled participants, half were women (48 [50%]), and a majority were White (92 [96%]), married or living with a partner (81 [84%]), and working (51 [53%]). Of these participants, 60 (63%) completed surveys at diagnosis and at least 1 follow-up. Of the 30 caregivers, most were women (24 [80%]), White (29 [97%]), married or living with a partner (28 [93%]), and working (22 [73%]). Caregivers of nonworking patients reported higher scores on the CRA subscale for health problems than caregivers of working patients (mean difference, 0.41; 95% CI, 0.18-0.64). Caregivers of patients with UW-QOL social/emotional (S/E) subscale scores of 62 or lower at diagnosis reported increased scores on the CRA subscale for health problems (UW-QOL-S/E score of 22: CRA score mean difference, 1.12; 95% CI, 0.48-1.77; UW-QOL-S/E score of 42: CRA score mean difference, 0.74; 95% CI, 0.34-1.15; and UW-QOL-S/E score of 62: CRA score mean difference, 0.36; 95% CI, 0.14-0.59). Woman caregivers had statistically significant worsening scores on the Social Support Survey (mean difference, -9.18; 95% CI, -17.14 to -1.22). The proportion of lonely caregivers increased over treatment. Conclusions and Relevance: This cohort study highlights patient- and caregiver-specific factors that are associated with increased CGB. Results further demonstrate the potential implications for negative health outcomes for caregivers of patients who are not working and have lower health-related quality of life.

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.

"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.

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.

What are We Asking Patients to Do? A Critical Ethical Review of the Limits of Patient Self-Advocacy in the Oncology Setting.

Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (i.e., health-related, trust-based, and psychological); we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient's perspective relative to the challenges they are experiencing and work with them to meet their needs.

Self-advocacy Behaviors and Needs in Women with Advanced Cancer: Assessment and Differences by Patient Characteristics.

BACKGROUND: Self-advocacy skills allow individuals with cancer to overcome challenges related to their health, care, and well-being. Understanding the self-advocacy behaviors and needs of individuals with cancer is critical to addressing the lack of evidence-based self-advocacy interventions. The aims of this study are to describe (1) self-advocacy behaviors and needs of women with advanced cancer and (2) associations between self-advocacy and sociodemographic, cancer, and patient-reported outcomes. METHODS: We analyzed cross-sectional data from a clinical trial among women within 3 months of a metastatic breast or stage III or IV gynecologic cancer diagnosis. Descriptive and correlational statistics and tests of group difference were calculated for measures of self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale), sociodemographic characteristics, quality of life (FACT-G), symptom burden (M.D. Anderson Symptom Inventory), and mood (Hospital Anxiety and Depression Scale). RESULTS: Participants (N = 78) reported self-advocacy behaviors including making decisions based on their priorities, asking questions to their healthcare providers, and comparing their experiences to others' experiences. Self-advocacy needs focused on finding health information and talking with healthcare providers. Self-advocacy behaviors and needs did not differ by participants' sociodemographic characteristics or mood. Higher self-advocacy behaviors were associated with higher quality of life (p ≤ .01) and lower symptom severity (p < .05) with a trend for cancer recurrence (p = .05). CONCLUSIONS: Women with advanced cancer report engaging in self-advocacy behaviors and these are associated with higher quality of life and lower symptom burden. Future research should determine if self-advocacy behaviors and needs change over time and how patient characteristics impact self-advocacy behaviors and needs.

Use of Prospective Multiplex Immunohistochemistry to Redefine Tissue Pathways of Diagnostic Core Biopsy of Prostate.

The incidence of prostatic cancer in the United Kingdom has increased over 40% in the past 30 years. The majority of these cancers are diagnosed by core biopsy, posing a considerable strain on a service that struggles to recruit sufficient histopathologists. The current methodology for tissue diagnosis has a significant false-negative rate, small false-positive rate, and a proportion of indeterminate diagnoses. Therefore, this area presents an opportunity both to improve diagnostic quality and to reduce the burden on resources. We investigated streamlining tissue pathways by increasing the utilization of readily available resources to reduce the burden on scarce resources and improve the accuracy of diagnosis. This involved applying prospective multiplex immunohistochemistry (IHC) using 4 different markers (CK5, p63, racemase, and Ki-67) and 2 chromogens. We conducted a prospective study using over 8000 cores and 3 consultant histopathologists. The pathologists assessed each core using either conventional stains (hematoxylin and eosin) only or multiplex IHC only. The results of this assessment were later compared with the overall assessment made for the final histologic diagnosis. Results show that IHC alone has a positive predictive value of 98.97% and a negative predictive value of 99.91%, while hematoxylin and eosin alone has a positive predictive value of 94.21% and negative predictive value of 99.07%, demonstrating improved diagnostic accuracy. When assessed against the use of on-demand IHC, prospective IHC improves turn-around-times, reduces indeterminate diagnoses, improves pathologist's accuracy and efficiency and, in overall terms, is cost-effective. In addition, it is possible to structure these tests within the routine of a diagnostic service with little impact on the overall capacity of the laboratory.

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.

Empowerment through technology: A systematic evaluation of the content and quality of mobile applications to empower individuals with cancer.

OBJECTIVE: Greater emphasis on patient empowerment has led to a plethora of mobile health applications aimed at empowering patients with cancer. However, the rigor and evidence of these apps are rarely acknowledged. This systematic review of patient empowerment apps describes the characteristics, quality, heuristics, and evidence supporting these apps. MATERIALS AND METHODS: We identified commercially available apps through the Apple and Google Play stores using patient- and research-derived conceptualizations of patient empowerment. Three authors used the Mobile App Rating Scale, heuristics, readability, user ratings, and evidence to evaluate the apps' foci, features, and quality. App characteristics were summarized with descriptive analyses. RESULTS: Twelve apps met the eligibility criteria and were analyzed. Apps' content focused on enhancing communication skills (n = 10, 83.3%), social support (n = 8, 66.7%), information about cancer and treatment (n = 8, 66.7%), and peer-to-peer support (n = 5, 41.7%). The mean objective (3.9 ± 0.5 out of 5) and subjective (3.7 ± 1.0 out of 5) quality scores were moderate to high. Most heuristics were not violated, and the mean reading level was 10th grade, which is above the recommended 8th grade level. Four apps had been evaluated in published research articles. DISCUSSION: The contents of patient empowerment apps varied greatly, and the readability was exclusionary to the average reader. Apps. CONCLUSION: Patient empowerment apps should be more rigorously designed and tested to ensure the apps are usable and beneficial to diverse groups of cancer survivors.

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.