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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 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.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).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).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.

Teaching patients with cancer the skill of self-advocacy shifts the focus of their cancer care on what is important to them, leading to optimized patient-centered care. As oncology nurses, providing support to our 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. This article provides oncology nurses with background knowledge of self-advocacy; key ways in which they can support patients in self-advocating; and a case study to provide contextual understanding of how and why nurses can promote patient self-advocacy.

Background Online health communities (OHCs) can be a source for clinicians to learn the needs of cancer patients and caregivers. Ovarian cancer (OvCa) patients and caregivers deal with a wide range of unmet needs, many of which are expressed in OHCs. An automated need classification model could help clinicians more easily understand and prioritize information available in the OHCs. Objective The aim of this study was to use initial OHC postings to develop an automated model for the classification of OvCa patient and caregiver needs. Methods We collected data from the OvCa OHC and analyzed the initial postings of patients and caregivers (n = 853). Two annotators coded each posting with 12 types of needs. Then, we applied the machine learning approach with bag-of-words features to build a model to classify needs. F1 score, an indicator of model accuracy, was used to evaluate the model. Results The most reported needs were information, social, psychological/emotional, and physical. Thirty-nine percent of postings described information and social needs in the same posting. Our model reported a high level of accuracy for classifying those top needs. Psychological terms were important for classifying psychological/emotional and social needs. Medical terms were important for physical and information needs. Conclusions We demonstrate the potential of using OHCs to supplement traditional needs assessment. Further research would incorporate additional information (eg, trajectory, stage) for more sophisticated models. Implications for practice This study shows the potential of automated classification to leverage OHCs for needs assessment. Our approach can be applied to different types of cancer and enhanced by using domain-specific information.

PURPOSE: Patients with advanced cancer often have unrealistic expectations about prognosis and treatment. This study assessed the effect of an oncology nurse-led primary palliative care intervention on illness expectations among patients with advanced cancer. METHODS: This study is a secondary analysis of a cluster-randomized trial of primary palliative care conducted at 17 oncology clinics. Adult patients with advanced solid tumors for whom the oncologist would not be surprised if died within 1 year were enrolled. Monthly visits were designed to foster realistic illness expectations by eliciting patient concerns and goals for their medical care and empowering patients and families to engage in discussions with oncologists about treatment options and preferences. Baseline and 3-month questionnaires included questions about life expectancy, treatment intent, and terminal illness acknowledgment. Odds of realistic illness expectations at 3 months were adjusted for baseline responses, patient demographic and clinical characteristics, and intervention dose. RESULTS: Among 457 primarily White patients, there was little difference in realistic illness expectations at 3 months between intervention and standard care groups: 12.8% v 11.4% for life expectancy (adjusted odds ratio [aOR] = 1.15; 95% CI, 0.59 to 2.22; P = .684); 24.6% v 33.3% for treatment intent (aOR = 0.76; 95% CI, 0.44 to 1.27; P = .290); 53.6% v 44.7% for terminal illness acknowledgment (aOR = 1.28; 95% CI, 0.81 to 2.00; P = .288). Results did not differ when accounting for variation in clinic sites or intervention dose. CONCLUSION: Illness expectations are difficult to change among patients with advanced cancer. Additional work is needed to identify approaches within oncology practices that foster realistic illness expectations to improve patient decision making.

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.

Objectives Cancer care attuned to meeting the needs of older adults is imperative to ensure that they receive appropriate levels of treatment in accordance with their goals of care. Achieving age-friendly systems and geriatric-competent workforces require rethinking current models of cancer care delivery. This article reports on a descriptive study on the readiness of U.S. cancer programs to provide age-friendly cancer care. Sample & setting A survey was sent to 567 ambulatory oncology leaders in the United States. Of the 81 respondents, 61 answered all questions. Methods & variables The authors developed and administered an online survey assessing cancer programs' age-friendly cancer care practices and readiness. Survey questions were based on the elements of the 4Ms framework. Results were analyzed using frequencies and percentages for categorically measured survey items and measures of central tendency for continuously scaled survey items. Results 67% of respondents reported that their program could deliver age-friendly cancer care within five years. Respondents less frequently indicated that they employed specific 4Ms elements. Implications for nursing The results of this study suggest gaps in readiness to implement age-friendly cancer care. Recommendations to improve readiness include increasing awareness, expanding workforce preparation, and improving cancer program leadership engagement.

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 (β = 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.

Purpose Patients with advanced cancer experience many complicated situations which 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 intervention Strong Together. Methods This was a qualitative cross-sectional descriptive among women receiving cancer care at an academic cancer center within three months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one interviews after the three-month intervention and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze interview transcripts and notes and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants' experiences engaging with the serious game intervention. Results Participants (N = 40) reported that the Strong Together serious game 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 demonstrates 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.

Objective To define important aspects of survivorship care for the more than 1.2million survivors of gynecologic cancer currently living in the US. Data Sources Research articles, reviews, position statements and white papers, and evidence-based guidelines. Conclusion Survivorship care includes a coordinated plan of care, ongoing surveillance, health promotion support, and management of long-term and late effects of treatment. Implications for Nursing Practice Nurses need to be aware of the current guidelines for post-treatment surveillance and health promotion recommendations for survivors of gynecologic cancers. Early identification of long-term and late effects of treatment followed by coordinated medical intervention and self-management education are essential to improve quality of life.

PURPOSE: Family caregivers are instrumental to patients with gynecologic cancer and can be deeply affected by the demands of caregiving. Our aims were as follows: (1) increase awareness of unmet needs of caregivers and (2) identify and prioritize the unmet needs of caregivers and essential support services to be provided in gynecologic cancer centers. METHODS: From July 2017 to June 2018, a 16-person steering committee and 40 stakeholders, including caregivers, patients, and clinicians, participated in a modified Delphi approach to generate, review, and prioritize a set of essential elements for caregiver support. Stakeholders prioritized caregiver needs and brainstormed, discussed, and prioritized essential support services to meet those needs, using three rounds of a consensus-building protocol. Basic descriptive statistics were performed to feed means and rankings back to stakeholders before each round. RESULTS: The top three caregiver needs were as follows: (1) to obtain information about their loved one’s cancer, (2) how to provide support and comfort to their loved one, and (3) how to maintain their own emotional health and well-being. Fifteen essential elements of support for caregivers of patients with gynecologic cancer were identified and ranged from elements currently attainable (eg, information on managing symptoms, skilled-care training, a point person to help navigate the system) to more aspirational elements (eg, integrative services to promote caregiver well-being). CONCLUSION: To ensure comprehensive quality care, clinicians and health care providers should strive to provide caregivers with the identified essential elements of support. Health care settings should work to incorporate caregiver needs into cancer care delivery.

BACKGROUND: Little is documented regarding objective financial metrics and their impact on subjective financial toxicity in head and neck cancer (HNC) survivors. METHODS: In a cross-sectional analysis, 71 survivors with available claims data for HNC-specific out-of-pocket expenses (OOPE) completed a survey including patient-reported, subjective financial toxicity outcome tools: the Comprehensive Score for financial Toxicity (COST) and the Financial Distress Questionnaire (FDQ). RESULTS: Worse COST scores were significantly associated with lower earnings at survey administration (coefficient = 3.79; 95% CI 2.63–4.95; p < 0.001); loss of earnings after diagnosis (coefficient = 6.03; 95% CI 0.53–11.52; p = 0.032); and greater annual OOPE as a proportion of earnings [log10(Annual OOPE: Earnings at survey): coefficient = −5.66; 95% CI −10.28 to −1.04; p = 0.017]. Similar results were found with FDQ. CONCLUSION: Financial toxicity is associated with particular socioeconomic characteristics which, if understood, would assist the development of pre-treatment screening tools to detect at-risk individuals and intervene early in the HNC cancer survivorship trajectory.

Researchers define self-advocacy as the ability of an individual with cancer to overcome challenges in getting their preferences, needs, and values met. While imperative in all health care settings, self-advocacy is especially important in cancer care. The goal of this article is to present a conceptual framework for self-advocacy in cancer. We review foundational studies in self-advocacy, define the elements of the conceptual framework, discuss underlying assumptions of the framework, and suggest future directions in this research area. This framework provides an empirical and conceptual basis for studies designed to understand and improve self-advocacy among women with cancer.

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.

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.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.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.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.

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.

ObjectivesAs 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.MethodsOn 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.ResultsForty-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.ConclusionsExperts, 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.

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.

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.

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 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.

Preparing nursing students to engage in health policy is critical to ensuring the nursing workforce can influence the structure and financing of health care. The purpose of this study was to assess nursing students’ perceptions of their competencies, previous experiences, levels of interest, and values concerning health policy. Between September and November 2018, we conducted a cross-sectional online survey study among baccalaureate, masters, and Doctor of Nursing Practice students at a midwestern U.S. nursing school. Students ( N = 89) reported moderate levels of health policy competence while recognizing the value of health policy. Students reported high levels of involvement in some health policy activities (e.g., voting, belonging to student organizations, and following nursing and health care issues) and low levels of other activities (e.g., tracking policies and elections, meeting with officials, and participation and leadership in organizations). These findings provide insight into how nursing educators and administrators can capitalize on students’ experiences and interests to better prepare nurses in health policy.

Background Studies have demonstrated the negative effects of the costs of cancer care on the health and well-being of patients with cancer. Nurses require knowledge of the risk factors, experiences, and outcomes associated with financial toxicity prior to designing evidence-based studies and protocols to address financial toxicity. Objectives This article summarizes the state of the science in financial toxicity among patients with cancer, with the goal of guiding nurses in leading research and evidence-based practice efforts to decrease the impact of financial toxicity on patient outcomes. Methods The authors reviewed published research, theoretical models, and research grants that focus on financial toxicity among patients with cancer. The authors also synthesized study findings and project goals while emphasizing opportunities for nurses to meaningfully engage within this area as researchers and clinicians. Findings Substantial cross-sectional descriptive work documents the risk factors, experiences, and outcomes of financial toxicity. Future work should address methodologic concerns by using comprehensive, validated measures and applying conceptual models to design and test financial toxicity interventions using prospective, rigorous methodologies. The authors propose a conceptual model to assist researchers and clinicians.

PURPOSE: A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs. METHODS: Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes. RESULTS: For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project. CONCLUSION: This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.

(1) Describe financial toxicity (FT) in head and neck cancer (HNC) survivors and assess its association with personal/health characteristics and health-related quality of life (HRQOL); (2) examine financial coping mechanisms (savings/loans); (3) assess relationship between COmprehensive Score for financial Toxicity (COST) and Financial Distress Questionnaire (FDQ).Cross-sectional survey from January - April 2018 of insured patients at a tertiary multidisciplinary HNC survivorship clinic who completed primary treatment for squamous cell carcinoma of the oral cavity, oropharynx, or larynx/hypopharynx.Of 104 survivors, 30 (40.5%) demonstrated high FT. Patients with worse FT were more likely (1) not married (COST, 25.33 ± 1.87 vs. 30.61 ± 1.34, p = 0.008); (2) of lower education levels (COST, 26.12 ± 1.47 vs. 34.14 ± 1.47, p 0.001); and (3) with larynx/hypopharynx primaries (COST, 22.86 ± 2.28 vs. 30.27 ± 1.50 vs. 32.72 ± 1.98, p = 0.005). Younger age (4.23, 95%CI 2.20 to 6.26, p 0.001), lower earnings at diagnosis (1.17, 95%CI 0.76 to 1.58, p 0.001), and loss in earnings (-1.80, 95%CI -2.43 to -1.16, p 0.001) were associated with worse FT. COST was associated with HRQOL (0.08, p = 0.03). Most survivors (63/102, 60%) reported using savings and/or loans. Worse FT was associated with increased likelihood of using more mechanisms (COST, OR1.06, 95%CI 1.02 to 1.10, p = 0.004). Similar results were found with FDQ.We found differences in FT by primary site, with worst FT in larynx/hypopharynx patients. This finding illuminates potential site-specific factors, e.g. workplace discrimination or inability to return to work, that may contribute to increased risk. FDQ correlates strongly with COST, encouraging further exploration as a clinically-meaningful screening tool.

Measure the prevalence of and factors associated with financial toxicity (FT) and caregiver burden in families of tracheostomy-dependent children. FT is defined as the objective and subjective patient-level impact of the costs of medical care and has been associated with lower quality of life, decreased compliance with treatment, and increased mortality.A medical record review was performed on all children with a tracheostomy tube placed from 2009 to 2018 at a tertiary children's hospital to identify and include children younger than 18 years old, not deceased, and not decannulated at the time of review. Eligible children's caregivers were contacted to fill out a 36-item questionnaire and three validated instruments: The Comprehensive Score for Financial Toxicity (COST) and the Financial Distress Questionnaire (FDQ), both addressed to the parent/primary caregiver, and the Burden Scale for Family Caregivers - short version (BSFC-s).Of the 140 eligible tracheostomy patients identified, 45 caregivers (32.1%) returned the survey. The average COST score was 18 ± 1.7 with 73.3% of caregivers reporting high toxicity based on FDQ, and 75.6% having severe-to-very severe caregiver burden. Significant increase in FT was seen in households where an adult had to leave a paid position (p = 0.047) or work less (p = 0.002) because of their child's condition; or needed to omit some of the child's medical services or medications due to cost-prohibitive reasons (p0.001). Financial toxicity was associated with caregiver burden (by BSFC-s) [r = -596; beta coefficient = -0.95, t(43) = -4.87, p0.001] and financial distress (by FDQ; p0.001).Caregivers of children with medically complex, tracheostomy-dependent conditions suffer from FT and caregiver burden. As a result, harmful financial coping mechanisms such as missing necessary care components or forgoing prescribed treatments, may be adopted for cost-prohibitive reasons.

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 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.

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.

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 (

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. 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 (

178 Background: Family caregiver (CG) demands in gynecologic oncology (gynonc) put CGs at risk for anxiety, depression, and inability to care for loved ones. Resources exist to support patients, but systematic support for CGs is lacking. Fifty percent of CGs in our clinic report 9 or more distressing unmet needs. Thus, an ASCO Quality Training Program (QTP) project aimed to assess and intervene on the needs of 75% of gynonc family CGs (identified in a concurrent QTP project). Methods: An interprofessional team reviewed baseline data, defined the problem and project aim, created process maps, and identified root causes of poor CG documentation. With stakeholder buy-in we implemented eight successive PDSA cycles over 6 months to address root causes. Biweekly team meetings were throughout the PDSA cycles. Outcomes were percent of CGs with 1) needs assessed, and 2) intervention received. Results: Root causes of poor CG assessment included 1) no protocol to assess/respond to CG needs; 2) no designated staff to ‘own’ CG assessment; and 3) lack of understanding of the value of CG support among clinicians. PDSA 1 (pre- launch) included: develop CG assessment/intervention protocol; create CG tracking database; pursue EHR capabilities. PDSA cycle 2-3 prioritized information provision about resources (52-73% of CGs) over individualized assessment (20-23% of CGs) due to the large number of CGs identified. Subsequent PDSAs sought to increase assessment effectiveness by focusing assessment/intervention on CGs of newly diagnosed and high risk patients. While there was variability in outcomes across cycles (Table), by PDSA cycle 8, staff had assessed and intervened on 58% and 50% of CGs, respectively. In addition, multiple potential serious CG and patient mental health crises were avoided from team interventions. Conclusions: CG assessment improved from 28% at baseline to >50% post implementation. Further efforts to more fully integrate assessment and tracking into EHR to reduce the burden of CG tracking over time is underway. [Table: see text]