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.

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.

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.

"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.

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.

Mapping Behavioral Health Serious Game Interventions for Adults With Chronic Illness: Scoping Review.

BACKGROUND: Serious games for health are increasingly being used to address health outcomes in patients with chronic illnesses. These studies vary in their study designs, patient populations, frameworks, outcome variables, and degree of specificity of the serious game intervention. OBJECTIVE: This scoping review aims to clarify the conceptual features of the existing research related to serious games designed to improve cognitive and behavioral outcomes in adults with chronic illness. METHODS: We applied the Preferred Reporting Items of Systematic Reviews and Meta-Analysis for scoping reviews (PRISMA-ScR) methodology, including an a priori research question. We searched 4 electronic databases to identify articles published through November 2019. Inclusion criteria encompassed (1) adults 18 years or older; (2) patients with a diagnosis of chronic illness; (3) a serious game intervention; and (4) defined patient outcomes that assess patients' behavioral, cognitive, or health outcomes. RESULTS: Of the 3305 articles identified, 38 were included in the review. We charted and analyzed the theoretical frameworks, key concepts, and outcome variables of these studies with summaries of features across articles. The majority of studies used a randomized controlled trial design (23/38, 61%), included a custom serious game intervention (22/38, 58%), and lacked a theoretical framework (25/38, 66%). Common outcome variables included quality of life (16/38, 42%), mood (15/38, 39%), cognitive function (13/38, 34%), symptoms (12/38, 32%), and physical activity (9/38, 24%). Key differences between studies included whether or not serious games aimed to train versus teach patients, be widely accessible versus tailored interventions, or replace versus complement current treatments. CONCLUSIONS: This scoping review defines the current landscape of research in serious games for health research targeting behavioral and cognitive outcomes in adults with chronic disease. Studies have addressed a variety of patient populations and diverse patient outcomes. Researchers wanting to build on the current research should integrate theoretical frameworks into the design of the intervention and trial to more clearly articulate the active ingredients and mechanisms of serious games.

Teaching Patients with Advanced Cancer to Self-Advocate: Development and Acceptability of the Strong Together™ Serious Game.

OBJECTIVE: Serious games are a growing form of psychoeducation, although few studies have evaluated serious games for patients with advanced cancer. The purpose of this study was to develop and assess the initial acceptability of a serious game to teach women with advanced cancer self-advocacy skills, including communication, decision-making, and social connectivity, to improve their quality of life with cancer. MATERIALS AND METHODS: We conducted a multistage, user-centered codesign process to develop the content of the game that was consistent with our work on how patients self-advocate and patients' preferences for the game. First, we conducted an open pilot study of a mock paper version of the game by assessing patients' interest in the serious game. Second, we organized a diverse expert panel to develop the serious game with a company, Simcoach Games, using patient-centered design approaches with multiple rounds of patient feedback. Finally, we performed acceptability testing of the game by asking patients their perceptions of the game's appropriateness, realism, and entertainment. RESULTS: During the three stages of game development, patients reported that the serious game was appropriate, informative, useful, and relevant to their challenges as patients with cancer. Suggestions for improvement included tailoring the game to a patient's specific situation, providing the game early in treatment, and including caregivers and other patients in the game play. CONCLUSION: The Strong Together™ serious game demonstrates the potential to assist patients in advocating for their needs and priorities. Future work will use patient suggestions to improve the game before efficacy testing.

Communication Differences between Oncologists and Palliative Care Clinicians: A Qualitative Analysis of Early, Integrated Palliative Care in Patients with Advanced Cancer.

BACKGROUND: Growing evidence demonstrates the benefits of early, integrated palliative care (PC) for patients with advanced cancer and their caregivers. Yet, data are lacking on the communication patterns within this model of care. OBJECTIVE: The goals of this study were to describe the content of patient-clinician discussions among patients receiving PC and to compare differences in discussion content between oncologists and PC clinicians. DESIGN: We conducted a qualitative observational analysis. SETTING/SUBJECTS: We included patients with incurable lung and esophageal cancer enrolled in a randomized trial of early, integrated PC versus usual oncology care. We analyzed 68 audio-recorded clinic visits (34 oncologist visits; 34 PC clinician visits) immediately after patients' (N = 19) first and second cancer progressions. We examined themes of clinician communication, comparing the content and frequency of discussions between oncologists and PC clinicians. RESULTS: Although both oncology and PC clinicians discussed symptom management, medical understanding, and treatment decision making with patients at nearly all postprogression visits, PC clinicians tended to assess patient understanding of the treatment process and prognosis more often than oncologists. PC clinicians addressed patient coping, caregiver experiences and needs, and advance care planning more frequently than oncologists. CONCLUSION: PC clinicians play a distinct, complementary role to oncologists in providing care for patients with advanced cancer and their caregivers. PC clinicians tend to assess and elaborate on patient understanding of prognosis and treatment and emphasize effective coping, caregiver needs, and advance care planning. These results illuminate the communication elements by which early, integrated PC may improve patient and caregiver outcomes.

Survivorship care planning in gynecologic oncology-perspectives from patients, caregivers, and health care providers.

PURPOSE: This qualitative study sought to describe the challenges following treatment and the preferences regarding survivorship care among patients treated for gynecological cancer, their caregivers, and health care providers. METHODS: Between July and August 2017, in-depth semi-structured interviews regarding survivorship were conducted at a large academic hospital in the USA among patients who recently completed treatment (< 12 months) for a gynecological cancer (ovarian, endometrial, cervical, and vulvar) and their primary caregivers. A focus group was conducted among health care providers (oncologists, nurses, and fellows). Main themes were identified using descriptive content analysis. RESULTS: A total of 30 individuals participated in this study (13 patients, 9 caregivers, 8 health care providers). Almost all participants reported a desire for more information on how to address survivorship needs, specifically as they related to side effects, follow-up schedule, and psychological assistance. Despite this uniformly identified need for more information, preferences for survivorship care planning differed across cancer types and individuals, with respect to content, timing, and mode of delivery. Health care providers expressed challenges in communicating with patients about survivorship, a desire to shift post-treatment conversations to the goal of improving quality of life as opposed to focusing on disease recurrence, and an unmet need for disease specific and individualized survivorship care planning. CONCLUSIONS: Patients, caregivers, and health care providers each expressed a need for gynecologic cancer-tailored survivorship care resources. IMPLICATIONS FOR CANCER SURVIVORS: The variation of disease types and patient and caregiver needs may require multi-faceted, individualized survivorship care planning.

Unique experiences of direct entry BSN/BS-PhD nursing students: A Delphi study.

BACKGROUND: Given the aging nursing education workforce and the persistent high demand for doctorally-prepared nursing faculty, there is a critical need to increase the number of nurses entering and completing PhD programs. To fill this need, accelerated PhD education pathways, such as the direct entry BSN/BS-PhD education pathway, have become popular. OBJECTIVE: The objective of this study was to explore the unique characteristics of the direct entry BSN/BS-PhD student experience. This study defines and details the experiences of current and past direct entry BSN/BS-PhD students. DESIGN: This was a qualitative, descriptive study. SETTING: Web-based journals and feedback. PARTICIPANTS: Our sample includes four former and current direct entry BSN/BS-PhD students. METHODS: We used the Delphi method to first analyze participants' journal entries on their lived experiences, and then iteratively summarize and classify the experiences into summative themes. RESULTS: We found four themes unique to participants' experiences: commitment to science, nursing identity, exploring prospects, and balancing family and student expectations. CONCLUSIONS: To ensure that BSN/BS-PhD students have a high-quality education, nurse leaders should be aware of the unique perspectives of direct entry BSN/BS-PhD students. Results from this study can be used to evaluate BSN/BS-PhD programs from students' perspectives.

The Needs of Women Treated for Ovarian Cancer: Results From a #gyncsm Twitter Chat.

PURPOSE: Ovarian cancer is the most fatal of all gynecologic cancers, with a high relapse rate regardless of stage. Women treated for ovarian cancer, therefore, likely have supportive care needs that extend well beyond the time frame of first-line therapy. Unfortunately, there is minimal data describing these needs. The purpose of this qualitative study is to understand the supportive care needs of women with ovarian care at the end of treatment. METHODS: To better understand the issues faced by women with ovarian cancer, we conducted a public Twitter chat in collaboration with gynecologic cancer social media (#gyncsm). Both quantitative and qualitative analyses were performed. RESULTS: The chat occurred over a 1-hour time frame on Twitter and resulted in more than 300 unique and original tweets from 43 participants during the chat and an additional 60 unique participants following the chat. Survivors and physicians represented 32% and 11% of participants, respectively; caregivers, advocates, and other clinicians represented the remaining participants. Participants noted deep interest in receiving support during survivorship and dissatisfaction with currently available resources. Sentiment analysis showed that participants viewed the support from social media in a positive light and also revealed negative sentiment around the lack of support from health care providers at the end of treatment. CONCLUSIONS: Themes derived from the Twitter chat revealed the unique experiences of individuals with ovarian cancer after treatment, including a heightened sense of vulnerability. Understanding these themes represents an opportunity for clinicians to better understand and address the needs of this patient community.