Implementation of a Novel Patient Decision Aid for Women with Elevated Breast Cancer Risk Who Are Considering MRI Screening: A Pilot Study.

PURPOSE: To determine the feasibility and acceptability of using a patient decision aid (DA) for women with elevated breast cancer risk who are considering MRI screening. METHODS: This pilot study employed a mixed methods design to develop, modify, and test an interactive DA. The DA was administered among a consecutive patient sample with an estimated Tyrer-Cuzick v.8 lifetime breast cancer risk of 20% or greater and without a pathologic genetic mutation. The decisional conflict scale was used to measure decisional conflict. Post-intervention provider and patient feedback evaluated shared decision-making, feasibility, and acceptability. RESULTS: Twenty-four patients participated, with a median age of 44 years. Prior to DA use, sixteen patients (67%) were unsure whether to add MRI to their screening, six patients elected MRI (25%), and two patients declined MRI (8%). Following DA use, thirteen of sixteen of the initially undecided participants (81%) established a preference, with eleven electing to add MRI screening. Of participants with an initial preference, all maintained the same decision following use of the DA. Prior to the DA, the median decisional conflict score among participants was 25% (range 0-60%) compared with 0% (range 0-25%) after the DA. Healthcare providers reported that the DA was useful and easily incorporated into clinical workflow. CONCLUSIONS: This pilot study shows that there may be a benefit to DA utilization in the high-risk breast cancer clinic to guide shared decision-making in establishing a screening preference. The findings warrant further research to test the use of the DA in a larger, multi-site trial.

NCCN Policy Summit: Cancer Care in the Workplace: Building a 21st Century Workplace for Patients, Survivors, and Caretakers.

Survival rates for people with cancer and quality of life for survivors have increased significantly as a result of innovations in cancer treatment, improvements in early detection, and improved healthcare access. In the United States, 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. As more cancer survivors and patients remain in the workforce, employers must evaluate how they can adjust workplace policies to meet employee and business needs. Unfortunately, many people still encounter barriers to remaining in the workplace following a cancer diagnosis for themselves or a loved one. In an effort to explore the impacts of contemporary employment policies on patients with cancer, cancer survivors, and caregivers, NCCN hosted the Policy Summit "Cancer Care in the Workplace: Building a 21st Century Workplace for Cancer Patients, Survivors, and Caretakers" on June 17, 2022. This hybrid event, through keynotes and multistakeholder panel discussions, explored issues regarding employer benefit design, policy solutions, current best and promising practices for return to work, and how these issues impact treatment, survivorship, and caregiving in the cancer community.

Exploration of shared decision making in oncology within the United States: a scoping review.

PURPOSE: Shared decision making (SDM) among the oncology population is highly important due to complex screening and treatment decisions. SDM among patients with cancer, caregivers, and clinicians has gained more attention and importance, yet few articles have systematically examined SDM, specifically in the adult oncology population. This review aims to explore SDM within the oncology literature and help identify major gaps and concerns, with the goal to provide guidance in the development of clear SDM definitions and interventions. METHODS: We conducted a scoping review using the Arksey and O'Malley approach along with the PRISMA Extension for Scoping Reviews Checklist. A systematic search was conducted in four databases that included publications since 2016. RESULTS: Of the 364 initial articles, eleven publications met the inclusion criteria. We included articles that were original research, cancer related, and focused on shared decision making. Most studies were limited in defining SDM and operationalizing a model of SDM. There were several concerns revealed related to SDM: (1) racial inequality, (2) quality and preference of the patient, caregiver, and clinician communication is important, and (3) the use of a decision-making aid or tool provides value to the patient experience. CONCLUSION: Inconsistencies regarding the meaning and operationalization of SDM and inequality of the SDM process among patients from different racial/ethnic backgrounds impact the health and quality of care patients receive. Future studies should clearly and consistently define the meaning of SDM and develop decision aids that incorporate bidirectional, interactive communication between patients, caregivers, and clinicians that account for the diversity of racial, ethnic, and sociocultural backgrounds and preferences.

Optimizing Telemedicine Technologic Infrastructure with Animal Models: A Case in Telecystoscopy.

Background: Rapid evolution of telemedicine technology requires procedures in telemedicine to adapt frequently. An example in urology, telecystoscopy, allows certified advanced practice providers to perform cystoscopy, endoscopic examination of the bladder, in rural areas with real-time interpretation and guidance by an off-site urologist. We have previously shown the technological infrastructure for optimized video quality. Introduction: Newer models of cystoscope and coder/decoder (codec) are available with anticipation that components used in our original model will become unavailable. Our objective is to assess the diagnostic ability of two cystoscopes (Storz, Wolf) with old (SX20) and new (DX70) codecs. Materials and Methods: A single urologist performed flexible cystoscopy on an ex vivo porcine bladder. Combinations of cystoscope (Storz vs. Wolf), codec (SX20 vs. DX70), and internet transmission speed were used to create eight distinct recordings. Deidentified videos were reviewed by expert urologist reviewers via electronic survey with questions on video quality and diagnostic ability. A logistic regression model was used to assess the ability to make a diagnosis. Results: Eight transmitted cystoscopy videos were reviewed by 16 urologists. Despite new technology, the Storz cystoscope combined with the SX20 codec (the original combination) provides the best diagnostic capacity. Discussion: Technical infrastructure must be routinely validated to assess the component impact on overall quality because newer is not always better. Should the SX20 become obsolete, ex vivo animal models are safe, inexpensive anatomic models for testing. Conclusions: As technology continues to evolve, procedures in telemedicine must critically scrutinize the impact of new technologic components to uphold quality.

Blinded Comparison of Clarity, Proficiency and Diagnostic Capability of Tele-Cystoscopy Compared to Traditional Cystoscopy: A Pilot Study.

PURPOSE: In order to expand the availability of cystoscopy to underserved areas we have proposed using advanced practice providers to perform cystoscopy with real-time interpretation by the urologist on a telemedicine platform, termed "tele-cystoscopy." The purpose of this study is to have blinded external reviewers retrospectively compare multisite, prospectively collected video data from tele-cystoscopy with the video of traditional cystoscopy in terms of video clarity, practitioner proficiency and diagnostic capability. MATERIALS AND METHODS: Each patient underwent tele-cystoscopy by a trained advanced practice provider and traditional cystoscopy with an onsite urologist. Prospectively collected tele-cystoscopy transmitted video, tele-cystoscopy onsite video and traditional cystoscopy video were de-identified and blinded to external reviewers. Each video was evaluated and rated twice by independent reviewers and diagnostic agreement was quantified. RESULTS: Six tele-cystoscopy encounters were reviewed for a total of 36 assessments. Video clarity, defined by speed of transmission and image resolution, was better for onsite compared to transmitted tele-cystoscopy. Practitioner proficiency for thoroughness of inspection was rated at 92% for tele-cystoscopy and 100% for traditional cystoscopy. Confidence in identification of an abnormality was equivalent. Four of 6 videos had 100% agreement between reviewers for next action taken, indicating high diagnostic agreement. Additionally, provider performing cystoscopy and location did not statistically influence the ability to make a diagnosis or action taken. CONCLUSIONS: This model has excellent completeness of examination, equivalent ability to identify abnormalities and external validation of action taken. This pilot study demonstrates that tele-cystoscopy may expand access to bladder cancer surveillance.

Assigning value to preparation for prostate cancer decision making: a willingness to pay analysis.

BACKGROUND: The Personal Patient Profile-Prostate (P3P) is a web-based decision support system for men newly diagnosed with localized prostate cancer that has demonstrated efficacy in reducing decisional conflict. Our objective was to estimate willingness-to-pay (WTP) for men's decisional preparation activities. METHODS: In a multicenter, randomized trial of P3P, usual care group participants received typical preparation for decision making plus referral to publicly-available, educational websites. Intervention group participants received the same, plus online P3P educational media specific to the user's personal preferences and values, and a communication coaching component tailored to race\ethnicity, age and language. WTP data were collected one week after physician consultation. An iterative bidding direct contingent valuation survey format was used, randomly assigning participants to high or low starting values (SV). Tobit models were used to explore associations between SV-adjusted WTP and age, education, marital and work-status, insurance, decision-control preference and decision-making stage. RESULTS: Of 392 participants enrolled, 141 P3P and 107 usual care (UC) provided a WTP value. Men were willing to pay a median $25 (IQR $10-100) for P3P in addition to usual care preparation materials. In the final multivariable tobit regression model, SV, marital status, stage of decision making and income were significantly associated with WTP for P3P. Decision control preference was considered marginally significant (p = 0.11). Men were WTP a median $30 (IQR $10-$200) for usual care material alone. In the final multivariable model, SV, education, and stage of decision making were significantly associated with WTP in usual care. CONCLUSION: WTP was similar for UC and for the addition of P3P to UC decision preparation. The WTP values were associated with demographic and preference variables. Findings can help focus decision support on future patients who would benefit most: those without strong support systems, at earlier stages of decision making, and open to a shared-decision style. TRIAL REGISTRATION: NCT NCT01844999 . Registered May 3, 2013.

Decision Support with the Personal Patient Profile-Prostate: A Multicenter Randomized Trial.

PURPOSE: We evaluated the efficacy of the web based P3P (Personal Patient Profile-Prostate) decision aid vs usual care with regard to decisional conflict in men with localized prostate cancer. MATERIALS AND METHODS: A randomized (1:1), controlled, parallel group, nonblinded trial was performed in 4 regions of the United States. Eligible men had clinically localized prostate cancer and an upcoming consultation, and they spoke and read English or Spanish. Participants answered questionnaires to report decision making stage, personal characteristics, concerns and preferences plus baseline symptoms and decisional conflict. A randomization algorithm allocated participants to receive tailored education and communication coaching, generic teaching sheets and external websites plus a 1-page summary to clinicians (intervention) or the links plus materials provided in clinic (usual care). Conflict outcomes and the number of consultations were measured at 1 month. Univariate and multivariable models were used to analyze outcomes. RESULTS: A total of 392 men were randomized, including 198 to intervention and 194 to usual care, of whom 152 and 153, respectively, returned 1-month outcomes. The mean ± SD 1-month decisional conflict scale (score range 0 to 100) was 10.9 ± 16.7 for intervention and 9.9 ± 18.0 for usual care. The multivariable model revealed significantly reduced conflict in the intervention group (-5.00, 95% CI -9.40--0.59). Other predictors of conflict included income, marital or partner status, decision status, number of consultations, clinical site and D'Amico risk classification. CONCLUSIONS: In this multicenter trial the decision aid significantly reduced decisional conflict. Other variables impacted conflict and modified the effect of the decision aid, notably risk classification, consultations and resources. P3P is an effective adjunct for shared decision making in men with localized prostate cancer.

Initial evaluation of the Robert Wood Johnson Foundation Nurse Faculty Scholars program.

BACKGROUND: The Robert Wood Johnson Foundation Nurse Faculty Scholars (RWJF NFS) program was developed to enhance the career trajectory of young nursing faculty and to train the next generation of nurse scholars. Although there are publications that describe the RWJF NFS, no evaluative reports have been published. The purpose of this study was to evaluate the first three cohorts (n = 42 scholars) of the RWJF NFS program. METHODS: A descriptive research design was used. Data were derived from quarterly and annual reports, and a questionnaire (seven open-ended questions) was administered via Survey Monkey Inc. (Palo Alto, CA, USA). RESULTS: During their tenure, scholars had on average six to seven articles published, were teaching/mentoring at the graduate level (93%), and holding leadership positions at their academic institutions (100%). Eleven scholars (26%) achieved fellowship in the American Academy of Nursing, one of the highest nursing honors. The average ratings on a Likert scale of 1 (not at all supportive) to 10 (extremely supportive) of whether or not RWJF had helped scholars achieve their goals in teaching, service, research, and leadership were 7.7, 8.0, 9.4, and 9.5, respectively. The majority of scholars reported a positive, supportive relationship with their primary nursing and research mentors; although, several scholars noted challenges in connecting for meetings or telephone calls with their national nursing mentors. CONCLUSIONS: These initial results of the RWJF NFS program highlight the success of the program in meeting its overall goal-preparing the next generation of nursing academic scholars for leadership in the profession.

A theory-based decision aid for patients with cancer: results of feasibility and acceptability testing of DecisionKEYS for cancer.

PURPOSE: Appropriate utilization of treatment is a goal for all patients undergoing cancer treatment. Proper treatment maximizes benefit and limits exposure to unnecessary measures. This report describes findings of the feasibility and acceptability of implementing a short, clinic-based decision aid and presents an in-depth clinical profile of the participants. METHODS: This descriptive study used a prospective, quantitative approach to obtain the feasibility and acceptability of a decision aid (DecisionKEYS for Balancing Choices) for use in clinical settings. It combined results of trials of patients with three different common malignancies. All groups used the same decision aid series. Participants included 80 patients with solid tumors (22 with newly diagnosed breast cancer, 19 with advanced prostate cancer, and 39 with advanced lung cancer) and their 80 supporters as well as their physicians and nurses, for a total of 160 participants and 10 health professionals. RESULTS: The decision aid was highly acceptable to patient and supporter participants in all diagnostic groups. It was feasible for use in clinic settings; the overall value was rated highly. Of six physicians, all found the interactive format with the help of the nurse as feasible and acceptable. Nurses also rated the decision aid favorably. CONCLUSIONS: This intervention provides the opportunity to enhance decision making about cancer treatment and warrants further study including larger and more diverse groups. Strengths of the study included a theoretical grounding, feasibility testing of a practical clinic-based intervention, and summative evaluation of acceptability of the intervention by patient and supporter pairs. Further research also is needed to test the effectiveness of the decision aid in diverse clinical settings and to determine if this intervention can decrease overall costs.

African American Perceptions of Participating in Health Research Despite Historical Mistrust.

A qualitative descriptive approach examined perspectives of African Americans (AA) on their participation in health research despite historical research mistreatment. Nineteen AAs participated in semistructured interviews that provided data that were analyzed using thematic analysis. Salient themes included race concordance, being respected and valued by the researcher, research participation motivators, and cultural experiences of racism in health care. This study challenges dominant ideology that AAs are unwilling to participate in research and offers solutions to promote research inclusive of their perceptions. Therefore, researchers need to design research with inclusiveness and transparency that openly displays how research will impact future generations.

Illuminating the Contributions of African American Nurse Scientists Despite Structural Racism Barriers: A Qualitative Descriptive Study.

A qualitative descriptive approach examined African American nurse scientists' (AANSs') experiences with African American research participants despite obstacles of structural racism. Fourteen nurse scientists participated in semistructured interviews that provided data for the thematic analysis. Major themes included barriers to overcome as doctoral students, cultural experiences with structural racism, designers of culturally sensitive research, and humanitarian respect and relationship depth. This is the first research study to illuminate the contributions of AANSs who lead research in health disparities. Therefore, nursing leadership needs to illuminate AANSs' contributions, increase nurse diversification, and dismantle structural racism that creates obstacles that ultimately impact population health.

The role of trust in health decision making among African American men recruited from urban barbershops.

OBJECTIVE: To examine factors within the patient-provider relationship that influence which role African American men aged 40-70 years prefer when making health care decisions. METHODS: We recruited 40 African American men from barbershops in the Richmond, Virginia, metropolitan area to participate in semistructured interviews. At the completion of each interview, participants completed a brief self-administered demographic survey. The semistructured interviews were audiotaped and transcribed verbatim and then imported into a qualitative software program for organizing, sorting, and coding data. The principles of thematic analysis and template approach were used in this study. The survey data were analyzed using descriptive statistics. RESULTS: Trust was a major theme that emerged from the semistructured interviews. The men listed trust in the health care provider as the primary reason for choosing a collaborative or active role in the decision-making process. Within the theme of trust, 4 subthemes emerged: expertise, information sharing, active listening, and relationship length. Thirty-five out of the 40 men interviewed preferred an active or collaborative role in the decision-making process; only 5 preferred passive decision making. CONCLUSIONS: Trust emerged as an important factor that influenced role preference for African American men when making health care decisions in the context of the patient-provider relationship. Future studies that help identify which other factors influence health care decision-making roles among African American men may have implications for addressing health disparities among this population and improve the quality of their health care.

Exploring cancer support needs for older African-American men with prostate cancer.

PURPOSE: The purpose of this study was to explore cancer support and financial issues related to cancer care experienced by African-American men with prostate cancer and to understand whom they relied on for resource issues during diagnosis and treatment. METHODS: This is a descriptive qualitative study of 23 rural and urban 65 years old and older African-American prostate cancer survivors. Five focus groups were conducted containing African-American prostate cancer survivors who were recruited from community-based centers (e.g., churches, barbershops, diners, and primary care clinics) in central Virginia and Maryland. Focus group discussions were audiotaped, transcribed, and coded. Data were organized and managed using a qualitative analysis software program. Emerging themes uncovered specific problems for older rural African-American men with cancer, and focus group data were examined for potential solutions to these problems. RESULTS: Two common themes emerged: (1) family and physician support are important, and (2) insurance is a necessity for appropriate health care. A difference between rural and urban African-American prostate cancer survivors emerged as well: difference in spirituality during diagnosis and treatment. CONCLUSIONS: Rural and urban African-American prostate cancer survivors' major support resource was their wives. Health insurance played a critical role as a support source by decreasing anxiety and financial hardships. Understanding rural and urban African-American prostate cancer survivors' support needs and challenges in relation to cancer diagnosis and treatment will allow nurses and other health-care providers to tailor cancer health plans more effectively for this population.

Update to 2019-2022 ONS Research Agenda: Rapid Review to Address Structural Racism and Health Inequities.

PURPOSE: The Oncology Nursing Society (ONS) formed a team to develop a necessary expansion of the 2019-2022 ONS Research Agenda, with a focus on racism and cancer care disparities. METHODS: A multimethod consensus-building approach was used to develop and refine the research priorities. A panel of oncology nurse scientists and equity scholars with expertise in health disparities conducted a rapid review of the literature, consulted with experts and oncology nurses, and reviewed priorities from funding agencies. RESULTS: Critical gaps in the literature were identified and used to develop priority areas for oncology nursing research, practice, and workforce development. SYNTHESIS: This is the first article in a two-part series that discusses structural racism and health inequities within oncology nursing. In this article, three priority areas for oncology nursing research are presented; in the second article, strategies to improve cancer disparities and equity and diversity in the oncology workforce are described. IMPLICATIONS FOR RESEARCH: Research priorities are presented to inform future research that will provide methods and tools to increase health equity and reduce structural racism in oncology nursing practice, research, education, policy, and advocacy.

Update to 2019-2022 ONS Research Agenda: Rapid Review to Promote Equity in Oncology Healthcare Access and Workforce Development.

PURPOSE: The Oncology Nursing Society (ONS) tasked a rapid response research team (RRRT) to develop priorities to increase diversity, equity, and inclusivity in oncology clinical care and workforce development. METHODS: An RRRT of experts in health disparities conducted a rapid review of the literature, consulted with oncology nurse leaders and disparities researchers, and reviewed priorities from funding agencies. RESULTS: Significant gaps in the current oncology disparities literature were identified and used to inform priority areas for future research practice and workforce development in oncology nursing. SYNTHESIS: This is the second article in a two-part series that presents findings on structural racism and health inequities in oncology nursing. In the first article, three priority areas for oncology nursing research were presented. In this article, strategies to improve diversity, equity, and inclusivity in clinical practice and the oncology workforce are described. IMPLICATIONS FOR RESEARCH: Recommendations are presented to inform research, clinical, administrative, and academic oncology nursing settings on increasing diversity, equity, and inclusivity and deconstructing structural racism.

Employing a mobile health decision aid to improve decision-making for patients with advanced prostate cancer and their decision partners/proxies: the CHAMPION randomized controlled trial study design.

BACKGROUND: Metastatic prostate cancer remains a lethal malignancy that warrants novel supportive interventions for patients and their decision partners and proxies. Decision aids have been applied primarily to patients with localized disease, with minimal inclusion of patients with advanced prostate cancer and their decision partners. The use of a community patient navigator (CPN) has been shown to have a positive supportive role in health care, particularly with individuals from minority populations. Research is needed to evaluate decision support interventions tailored to the needs of advanced prostate cancer patients and their decision partners in diverse populations. METHODS: Guided by Janis and Mann's Conflict Model of Decision Making, the Cancer Health Aid to Manage Preferences and Improve Outcomes through Navigation (CHAMPION) is a randomized controlled trial to assess the feasibility and acceptability of a mobile health (mHealth), CPN-administered decision support intervention designed to facilitate communication between patients, their decision partners, and the healthcare team. Adult prostate cancer patients and their decision partners at three mid-Atlantic hospitals in the USA were randomized to receive enhanced usual care or the decision intervention. The CHAMPION intervention includes a theory-based decision-making process tutorial, immediate and health-related quality of life graphical summaries over time (using mHealth), values clarification via a balance sheet procedure with the CPN support during difficult decisions, and facilitated discussions with providers to enhance informed, shared decision-making. DISCUSSION: The CHAMPION intervention is designed to leverage dynamic resources, such as CPN teams, mHealth technology, and theory-based information, to support decision-making for advanced prostate cancer patients and their decision partners. This intervention is intended to engage decision partners in addition to patients and represents a novel, sustainable, and scalable way to build on individual and community strengths. Patients from minority populations, in particular, may face unique challenges during clinical communication. CHAMPION emphasizes the inclusion of decision partners and CPNs as facilitators to help address these barriers to care. Thus, the CHAMPION intervention has the potential to positively impact patient and decision partner well-being by reducing decisional conflict and decision regret related to complex, treatment-based decisions, and to reduce cancer health disparities. Trial registration ClinicalTrials.gov NCT03327103 . Registered on 31 October 2017-retrospectively registered. World Health Organization Trial Registration Data Set included in Supplementary Materials.

Decision regret, adverse outcomes, and treatment choice in men with localized prostate cancer: Results from a multi-site randomized trial.

INTRODUCTION: Men diagnosed with localized prostate cancer must navigate a highly preference-sensitive decision between treatment options with varying adverse outcome profiles. We evaluated whether use of a decision support tool previously shown to decrease decisional conflict also impacted the secondary outcome of post-treatment decision regret. METHODS: Participants were randomized to receive personalized decision support via the Personal Patient Profile-Prostate or usual care prior to a final treatment decision. Symptoms were measured just before randomization and 6 months later; decision regret was measured at 6 months along with records review to ascertain treatment choices. Regression modeling explored associations between baseline variables including race and D`Amico risk, study group, and 6-month variables regret, choice, and symptoms. RESULTS: At 6 months, 287 of 392 (73%) men returned questionnaires of which 257 (89%) had made a treatment choice. Of that group, 201 of 257 (78%) completely answered the regret scale. Regret was not significantly different between participants randomized to the P3P intervention compared to the control group (P = 0.360). In univariate analyses, we found that Black men, men with hormonal symptoms, and men with bowel symptoms reported significantly higher decision regret (all P < 0.01). Significant interactions were detected between race and study group (intervention vs. usual care) in the multivariable model; use of the Personal Patient Profile-Prostate was associated with significantly decreased decisional regret among Black men (P = 0.037). Interactions between regret, symptoms and treatment revealed that (1) men choosing definitive treatment and reporting no hormonal symptoms reported lower regret compared to all others; and (2) men choosing active surveillance and reporting bowel symptoms had higher regret compared to all others. CONCLUSION: The Personal Patient Profile-Prostate decision support tool may be most beneficial in minimizing decisional regret for Black men considering treatment options for newly-diagnosed prostate cancer. TRIAL REGISTRATION: NCT01844999.

Family and friend interactions among African-American men deciding whether or not to have a prostate cancer screening.

Prostate cancer disproportionately affects African-American men. Family, friends, and trust in health care providers are factors that influence the decision making of African-American men when determining whether or not to get a prostate cancer screening done.

Strategies for recruiting African American men into prostate cancer screening studies.

BACKGROUND: Recruitment for research and clinical trials continues to be challenging. Prostate cancer is the most commonly diagnosed cancer in men and disproportionately affects African American men; thus, effective recruitment strategies are essential for this population. OBJECTIVES: The aim of this study was to focus on innovative and effective recruitment strategies for research on prostate cancer with minorities. METHODS: A systematic description is provided of the recruitment efforts for a hermeneutic phenomenological qualitative study of African American men's experiences in decision making on whether to have a prostate cancer screening. RESULTS: Seventeen African American men were enrolled from rural Central Virginia. Recruiting strategies were targeted on places where African American men usually are found but that are rarely used for recruitment: barbershops, community health centers, and churches. Word of mouth was also used, and most of the participants (n = 11) were reached through this method. DISCUSSION: Recruitment efforts have been noted to be particularly challenging among minorities, for numerous reasons. Making minority recruitment a priority in any research or clinical trial is essential in gaining a representative sample. Word of mouth is a powerful tool that is often forgotten but should be looked at in further detail.