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.

Lifetime Pain Management Experiences of Female Breast Cancer Survivors Aged 65+ Years.

PURPOSE: Explore factors influencing pain management among female breast cancer survivors aged 65+ years with moderate to severe pain based on a score of 4 or greater on the 0-10 numeric rating scale. DESIGN: Qualitative descriptive study. METHODS: We interviewed 21 purposefully sampled women aged 65+ years who experienced moderate to severe pain. Researchers coded interview transcripts for factors affecting study participants' pain management experiences. RESULTS: Pain management facilitators included patient-centered interactions with care teams and reliance on psychosocial assets. Challenges included ineffective care team interactions and participants' negative perceptions of opioid analgesia. Other factors included pain attributed to cancer treatment, pain management plan adherence, and psychosocial influencers. CONCLUSIONS: With regard to this sample, patient-centered communication and pain management education help female breast cancer survivors aged 65+ years manage their pain. Mitigation of opioid stigma and undermanaged painful comorbid conditions could further optimize pain management. Further research on the effects of breast cancer treatment, level of adherence to pain management recommendations, and psychosocial influences on pain management is needed. CLINICAL IMPLICATIONS: Providing contact information for care team members during and after clinic hours facilitates open communication, including timely reporting of new and undertreated pain. Collaborating with the patient and care team on a clear pain management plan and establishing parameters for when to notify the care team empower patients to optimize management of their pain. Verifying patients' understanding of prescribed analgesia and management of side effects and providing education as needed may reduce negative perceptions of opioid analgesia.

[Relationship between volume and structural characteristics and the quality of outcomes of perinatal centers for infants at the border of viability]. / Zusammenhang zwischen der Fallzahl und Strukturmerkmalen und der Ergebnisqualität von Perinatalzentren Level 1 für Frühgeborene an der Grenze der Lebensfähigkeit.

INTRODUCTION: This study investigates the relationship between volume, structural characteristics and quality of outcome, specifically for infants at the border of viability. METHODS: Using administrative data of the largest provider of statutory healthcare insurance in Germany between 2010-2015, infants with an admission weight (AW) between 250-1249 g treated initially in perinatal centers were included. For infants at the border of viability (250-499 g AW), the endpoints mortality and mortality or morbidity were analyzed. For comparison, infants with 500-749 g and 750-1249 g AW were analyzed. The impact of categorized volume (in quartiles) and structural characteristics (university hospital and in-house pediatric surgery) were examined in separate regressions. Odds ratios (ORs) and potentially avoidable deaths or severe morbidity were calculated. RESULTS: Infants with 250-499 g AW were significantly more likely to survive if initially treated in perinatal centers with an estimated volume of 62 cases (250-1249 g AW) per year (OR: 0.43; 95%-CI: 0.20-0.96) or in university perinatal centers with in-house pediatric surgery (OR: 0.48; 95%-CI: 0.24-0.93). There was also a positive impact of volume and structural characteristics for infants with 500-749 g and 750-1249 g AW. CONCLUSION: In addition to volume, structural characteristics also have a positive impact on the quality of outcomes. Additional requirements of structural characteristics for perinatal centers as well as a higher minimum volume may have a relevant positive impact on the outcome.

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.

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.

"I pretty much followed the law, and there weren't any decisions to make": A qualitative study of self-advocacy experiences of men with cancer.

Current conceptualizations of patient self-advocacy focus on women with cancer, leaving knowledge of male self-advocacy deficient. The purpose of this study is to describe the key components of self-advocacy among men with cancer. Adult (≥18 years old) men with a history of invasive cancer were recruited from cancer clinics and registries. Trained researchers led individual semi-structured interviews regarding participants' challenges, how they overcame those challenges, and barriers and facilitators to their self-advocacy. All interviews were analyzed using descriptive content analysis methods and synthesized into major themes. These themes were refined after receiving feedback from key stakeholders. Participants (N = 28) reported three major self-advocacy themes: (i) managing through information and planning; (ii) finding the best team and falling in line; and (iii) strategic social connections. These themes are richly described with representative quotations for each theme and subtheme. Based on these findings, existing models of patient self-advocacy should be adjusted to encompass how men self-advocate. Clinicians should consider how gender may impact how and why patients with cancer self-advocate so that they can best support their patients in achieving patient-centered care.

Stronger therapeutic alliance is associated with better quality of life among patients with advanced cancer.

OBJECTIVE: Patient-oncologist therapeutic alliance is a foundation of quality cancer care, although there is limited research demonstrating its relationship with patient outcomes. We investigated the relationship between therapeutic alliance and patient quality of life with a secondary goal of determining whether the association varied by patients' baseline level of psychological distress. METHODS: Cross-sectional analysis of baseline data from a randomized clinical trial of 672 patients with advanced cancer participating in a primary palliative care intervention trial. Patients completed baseline self-reported measures of therapeutic alliance (The Human Connection Scale, range: 16-64), overall quality of life (Functional Assessment of Cancer Therapy-Palliative Care, range: 0-184), and psychological distress (Hospital Anxiety and Depression Scale, range: 0-42). First, we determined the relationship between therapeutic alliance and quality of life using multivariable regression adjusting for confounders. We then examined if psychological distress was an effect modifier in this relationship by adding interaction effects of depression and anxiety symptoms on therapeutic alliance into the regression model. RESULTS: Patients reported high levels of therapeutic alliance (56.4 ± 7.4) and moderate quality of life (130.3 ± 25.5). Stronger therapeutic alliance was associated with better quality of life after adjusting for other confounding factors (ß = 3.7, 95% confidence interval = 2.1, 5.3, p < 0.01). The relationship between therapeutic alliance and quality of life was generally consistent regardless of psychological distress. CONCLUSIONS: Collaborative, trusting relationships between patients with advanced cancer and their oncologists are associated with better patient quality of life. Future research should investigate the causal, longitudinal nature of these relationships.

Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop.

PURPOSE: Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences. METHODS: This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities. RESULTS: Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice. CONCLUSION: These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.

[What is the Optimal Minimum Provider Volume in the Provision of Care for Preterm Infants with a Birth Weight below 1250 g in Germany?] / Wie hoch ist die optimale Mindestmenge für die Behandlung Frühgeborener mit einem Geburtsgewicht unter 1250 g in Deutschland?

INTRODUCTION: Numerous studies have investigated volume-outcome relationships in the treatment of very low birth weight infants. However, studies addressing the identification of optimal thresholds when introducing minimum provider volumes for treatment of these infants do not exist. METHODS: Publicly available data (www.perinatalzentren.org) of more than 56,000 infants weighing less than 1250 g at birth (NB<1250) and treated in level-1 perinatal centers (highest level in Germany) between 2010 and 2018 was used for statistical analysis. Potentially avoidable deaths after the introduction of minimum provider volumes were calculated by deducting observed deaths from estimated deaths based on logistic regression models for every existing empirical provider volume. Various smoothing functions were used to ascertain optimal thresholds for minimum provider volumes. RESULTS: Independent of the observation period or smoothing technique, the highest number of potentially avoidable deaths was observed for minimum provider volumes of 50-60 NB<1250 per year. Introducing a minimum provider volume of 50 without a transition period would reduce the number of level-1 perinatal centers to a quarter of the current number in Germany. Approximately 60% of NB<1250 would have to be reallocated. CONCLUSION: Analyses of resulting geographical distances are needed in the preparation of minimum provider volumes for treatment of NB<1250 in Germany. Such analyses should include perinatal centers expected to reach minimum provider volumes after subsequent reallocation in the future.

Integrating Political Philosophy Into Health Policy Education.

Twenty-first century America is marked by deep and seemingly incommensurable divisions in terms of public policy solutions to our most intractable issues. Health policy challenges are not immune to these deep divisions, as the debate during and since the passage of the Affordable Care Act illustrates. Positions on key public policy issues are driven by largely implicit and unarticulated philosophical presuppositions that guide individuals' notions of the nature of government, individuals' moral obligations to each other, how society assesses quality of life, and what it means to be a community. If faculty in schools of nursing are to prepare graduate nurses to enter into these heated public policy debates, we must help students understand, identify, and articulate the philosophical presuppositions that undergird reasoning related to health policy issues. In this article, we present a working taxonomy that can help faculty members provide students with a basic understanding of core philosophical principles. We attempt to categorize all of western political philosophy into four distinct traditions or "impulses," describing each of these four traditions in detail. We illustrate each tradition's approach to political reasoning using a specific health policy case study. We conclude with some guidance about how to implement this content within a doctoral-level public policy curriculum.

Caregiving Is a Marathon, Not a Road Race: Reenvisioning Caregiver Support Services in Gynecologic Oncology.

OBJECTIVES: As gynecologic cancer care shifts to the outpatient setting, caregivers are instrumental in helping patients navigate the demands of the disease and treatment. Through social media, we aimed to understand the needs of caregivers of patients with gynecologic cancers and support services necessary to meet these needs. METHODS: On January 10, 2018, a monthly Twitter discussion session was hosted by the GYNecologic Cancer Social Media community (handle @GYNCSM) using the hashtag #GYNCSM. Five topics regarding caregiver needs and support were discussed. Basic descriptive statistics, including means and frequencies of tweets, and a content analysis of the tweets were performed. RESULTS: Forty-six participants posted a total of 471 tweets, with 1.725 million impressions. Four main themes of caregiver needs emerged, including accepting help from others, a need to care for themselves as caregivers, increased access to information and resources, and a need for the health care team to communicate with caregivers. Themes relating to barriers to obtaining support services included practical barriers, a lack of awareness, negative emotions, and a need to do it all themselves. Participants suggested that caregiver support programs include convenient resources, caregiver peer support programs, support for the "work" of caregiving, and support to improve the emotional and physical health of the caregiver. CONCLUSIONS: Experts, patients, and caregivers effectively engaged in social media to identify a wide range of needs of caregivers of women with gynecologic cancers. Further research is needed to identify specific support services that could meet the priority needs of a broader network of caregivers.

AI-Generated Content in Cancer Symptom Management: A Comparative Analysis Between ChatGPT and NCCN.

BACKGROUND: Artificial intelligence-driven tools, like ChatGPT, are prevalent sources for online health information. Limited research has explored the congruity between AI-generated content and professional treatment guidelines. This study seeks to compare recommendations for cancer-related symptoms generated from ChatGPT with guidelines from the National Comprehensive Cancer Network (NCCN). INTERVENTION: We extracted treatment recommendations for nine symptoms from NCCN, separated into four full Supportive Care sections and five subsections of the Palliative Care webpage. We entered "How can I reduce my cancer-related [symptom]" into ChatGPT- 3.5 for these same symptoms and extracted its recommendations. A comparative content analysis focused on recommendations for medications, consultations, and non-pharmacological strategies. We compared word count and Flesch-Kincaid Grade Level (FKGL) readability for each NCCN and ChatGPT section. OUTCOMES: The mean percent agreement between NCCN and ChatGPT recommendations was 37.3% (range 16.7%-81.8%). NCCN offered more specific medication recommendations. ChatGPT did recommend medications in the constipation and diarrhea sections that were not recommended by NCCN. Significant differences in word count (P=0.03) and FKGL (P<0.01) were found for NCCN Supportive Care webpages, with ChatGPT having lower word count and reading level. In the NCCN Palliative Care webpage subsections, there was no significant difference in word count (P=0.076), but FKGL was significantly lower with ChatGPT (P<0.01). CONCLUSIONS/LESSONS LEARNED: While ChatGPT provides concise, accessible supportive care advice, discrepancies with guidelines raise concerns for patient-facing symptom management recommendations. Future research should consider how AI can be used in conjunction with evidence-based guidelines to support cancer patients' supportive care needs.

Measuring Engagement in Provider-Guided Digital Health Interventions With a Conceptual and Analytical Framework Using Nurse WRITE as an Exemplar: Exploratory Study With an Iterative Approach.

BACKGROUND: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. OBJECTIVE: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework's ability to describe and categorize engagement using Nurse WRITE as an example. METHODS: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures-total count of socio-affective engagement classes (eg, sharing personal experience) and total word count-and 2 cognitive engagement measures-total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data-the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. RESULTS: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses' queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. CONCLUSIONS: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants' engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy.

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.

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.