User-Centered Development and Patient Acceptability Testing of a Health-Coaching Intervention to Enhance Cancer Survivorship Follow-up in Primary Care.

We describe an iterative three-phase approach used to develop a cancer survivorship health-coaching intervention to guide self-management and follow-up care for post-treatment breast, colorectal, and prostate cancer survivors. Informed by theory (e.g., Cognitive-Social Health Information Processing Model (C-SHIP)), relevant literature, and clinical guidelines, we engaged in a user-centered design process. In phase I, we conducted depth interviews with survivors of breast (n = 34), prostate (n = 4), and colorectal (n = 6) cancers to develop a health coaching prototype. In phase II, we utilized user-testing interviews (n = 9) to test and refine the health coaching prototype. For both phases, we used a template analysis independently coding each interview. In phase I, majority (n = 34, 81%) of survivors were positive about the utility of health coaching. Among these survivors (n = 34), the top areas of identified need were emotional support (44%), general health information (35.3%), changes in diet and exercise (29.3%), accountability and motivation (23.5%), and information about treatment effects (17.7%). The prototype was developed and user-tested and refined in phase III to address the following concerns: (1) the amount of time for calls, (2) density of reading materials, (3) clarity about health coaches' role, (4) customization. Collectively, this resulted in the development of the Extended Cancer Educational for Long-Term Cancer Survivors health-coaching (EXCELSHC) program, which represents the first cancer survivorship follow-up program to support follow-up care designed-for-dissemination in primary care settings. EXCELSHC is being tested in a clinical efficacy trial. Future research will focus on program refinement and testing for effectiveness in primary care.

Correlates of Information Seeking Behaviors and Experiences Among Adult Cancer Survivors in the USA.

Understanding information seeking behaviors and experiences is essential for designing educational and supportive interventions to promote survivor's self-management post treatment. This study examined health and cancer information seeking, use of internet to find cancer information, and information seeking experiences among breast, colorectal, and prostate cancer survivors. Nationally representative data collected in 2017-2018 from 2 cycles of the Health Information National Trends Survey (HINTS 5, cycles 1 and 2 were merged with combined replicate weights using the jackknife replication method (n = 373). Regression analysis for three information seeking behaviors (i.e., health information, cancer information, and internet for cancer information) were modeled, including sociodemographic and clinical factors as predictors. In addition, separate regression analysis predicted three experiences of information seeking (effort, quality, and hard to understand) with sociodemographic and clinical factors. A majority of survivors (84.7%) sought health information. Factors significantly associated with seeking health information were gender (p = 0.024), education (p = 0.0021), and income (p = 0.018). Only 38% of survivors used the internet to seek cancer-related information. The only factor significantly associated with using the internet to seek cancer-related information was time since diagnosis (p = 0.0002). The factor significantly associated with difficulty understanding information was annual household income (p = 0.026). This study fills an important gap by identifying sociodemographic and cancer-related factors associated with information seeking behaviors and experiences. These findings highlight a need to tailor information for low socioeconomic status survivors to account for the lack of skills, resources, and motivation to seek information about health and cancer related topics independently.

Development and usability testing of the e-EXCELS tool to guide cancer survivorship follow-up care.

OBJECTIVE: The aim of this study is to describe a user-centered (e.g., cancer survivors and clinicians) development process of an eHealth tool designed to facilitate self-management of cancer survivorship follow-up care. METHODS: Guided by Cognitive-Social Health Information Processing (C-SHIP) model and informed by core self-management skills, we engaged in a user-centered design process. In phase I, we conducted in-depth interviews with survivors of breast (n = 33), prostate (n = 4), and colorectal (n = 6) cancers, and (n = 9) primary care providers to develop content and design of the web tool. Phase II utilized iterative user testing interviews (n = 9) to test the web-based tool prototype. Data from both phases were independently coded using a template/content analytic approach. RESULTS: The top 5 functions identified in phase I for the web-based platform included: (a) educational materials to learn and prepare for health encounters (80%); (b) questions for health providers (74%); (c) ability to track contact information of providers (67%); (d) provide general information (64%); and, (e) support information (62%). Users of the prototype reported patient burden, tool fatigue, introduction timing of the tool, relevance, and security/privacy as concerns in phase II. CONCLUSIONS: This study demonstrates the value of using a theoretically informed and user-centered design process to develop relevant and patient-centered eHealth resources to support cancer survivorship. A larger study is needed to establish the efficacy of this eHealth tool as an intervention to improve adherence to follow-up care guidelines.

Rationale and design of extended cancer education for longer term survivors (EXCELS): a randomized control trial of 'high touch' vs. 'high tech' cancer survivorship self-management tools in primary care.

BACKGROUND: Breast, colorectal, and prostate cancer survivors are at increased risk for late and long-term effects post-treatment. The post-treatment phase of care is often poorly coordinated and survivors navigate follow-up care with minimal information or guidance from their healthcare team. This manuscript describes the Extended Cancer Education for Longer-term Survivors (EXCELS) in Primary Care protocol. EXCELS is a randomized controlled trial to test the efficacy of patient-level self-management educational strategies on adherence to preventative health service use and cancer survivorship follow-up guidelines. METHODS: The EXCELS trial compares four conditions: (1) EXCELS-website (e.g., a mobile-optimized technology platform); (2) EXCELS-health coaching; (3) EXCELS-website and health coaching; and (4) a print booklet. Approximately 480 breast, colorectal, and prostate survivors will be recruited through the New Jersey Primary Care Research Network (NJPCRN) and New Jersey State Cancer Registry (NJSCR). Eligible survivors (diagnosed stages 1-3) must have completed active treatment, access to a phone and a computer, smartphone or tablet with internet access, and be able to speak and read English. Patient assessments occur at baseline, 6, 12, and 18 months. The primary outcomes are increased engagement in preventive health services and monitoring for cancer recurrence and treatment-related late effects. DISCUSSION: The EXCELS trial is the first to test cancer survivorship educational self-management interventions for cancer survivors in a primary care context. Findings from this trial will inform successful implementation and engagement strategies for longer-term, post-treatment cancer survivors managed in primary care settings. TRIAL REGISTRATION: Registered August 1, 2017 at ClinicalTrials.gov , trial # NCT03233555.

Examining the Durability of Colorectal Cancer Screening Awareness and Health Beliefs Among Medically Underserved Patients: Baseline to 12 months Post-Intervention.

The current study examines changes in awareness and health beliefs from baseline to 12 months post-intervention following receipt of one of two colorectal cancer (CRC) educational interventions that aimed to promote CRC screening among a racially and ethnically diverse and medically underserved population. Participants (N = 270) were enrolled in a randomized controlled trial to increase CRC screening and completed both baseline and 12-month follow-up assessments. Participants were aged 50-75, at average CRC risk, not up-to-date with CRC screening guidelines, and receiving care at one of three community-based clinics. Participants were randomized to receive either a targeted, low-literacy intervention informed by the Preventive Health Model [PHM] (photonovella and DVD plus fecal immunochemical test [FIT]) or a non-targeted intervention (standard educational brochure plus FIT). Changes in CRC awareness and health beliefs from baseline to 12 months were examined both within and between intervention groups using Student's t tests. Participants in both intervention conditions demonstrated an increase in CRC awareness, PHM social influence, and trust in the healthcare system (all p's < .0001), with no significant between-group differences. Among those receiving the targeted intervention, there also was an increase in PHM salience (p < .05). Among individuals receiving the non-targeted intervention, there was an increase in PHM response efficacy (p < .01) and PHM self-efficacy (p < .0001). Both CRC screening interventions promoted positive changes in awareness and several health beliefs from baseline to 12 months, suggesting important benefits of CRC education. Regardless of whether education was targeted or non-targeted, providing CRC screening education successfully promoted durable changes in awareness and health beliefs.

Recruitment Techniques and Strategies in a Community-Based Colorectal Cancer Screening Study of Men and Women of African Ancestry.

BACKGROUND: Recruiting ethnically diverse Black participants to an innovative, community-based research study to reduce colorectal cancer screening disparities requires multipronged recruitment techniques. OBJECTIVES: This article describes active, passive, and snowball recruitment techniques, and challenges and lessons learned in recruiting a diverse sample of Black participants. METHODS: For each of the three recruitment techniques, data were collected on strategies, enrollment efficiency (participants enrolled/participants evaluated), and reasons for ineligibility. RESULTS: Five hundred sixty individuals were evaluated, and 330 individuals were enrolled. Active recruitment yielded the highest number of enrolled participants, followed by passive and snowball. Snowball recruitment was the most efficient technique, with enrollment efficiency of 72.4%, followed by passive (58.1%) and active (55.7%) techniques. There were significant differences in gender, education, country of origin, health insurance, and having a regular physician by recruitment technique (p < .05). DISCUSSION: Multipronged recruitment techniques should be employed to increase reach, diversity, and study participation rates among Blacks. Although each recruitment technique had a variable enrollment efficiency, the use of multipronged recruitment techniques can lead to successful enrollment of diverse Blacks into cancer prevention and control interventions.

Understanding Cancer Worry Among Patients in a Community Clinic-Based Colorectal Cancer Screening Intervention Study.

BACKGROUND: To reduce colorectal cancer (CRC) screening disparities, it is important to understand correlates of different types of cancer worry among ethnically diverse individuals. OBJECTIVES: The current study examined the prevalence of three types of cancer worry (i.e., general cancer worry, CRC-specific worry, and worry about CRC test results) as well as sociodemographic and health-related predictors for each type of cancer worry. METHODS: Participants were aged 50-75, at average CRC risk, nonadherent to CRC screening guidelines, and enrolled in a randomized controlled trial to increase CRC screening. Participants completed a baseline questionnaire assessing sociodemographics, health beliefs, healthcare experiences, and three cancer worry measures. Associations between study variables were examined with separate univariate and multivariable logistic regression models. RESULTS: Responses from a total of 416 participants were used. Of these, 47% reported experiencing moderate-to-high levels of general cancer worry. Predictors of general cancer worry were salience and coherence (aOR = 1.1, 95% CI [1.0, 1.3]), perceived susceptibility (aOR = 1.2, 95% CI [1.1, 1.3), and social influence (aOR = 1.1, 95% CI [1.0, 0.1]). Fewer (23%) reported moderate-to-high levels of CRC-specific worry or CRC test worry (35%). Predictors of CRC worry were perceived susceptibility (aOR = 1.4, 95% CI [1.3, 1.6]) and social influence (aOR = 1.1, 95% CI [1.0, 1.2]); predictors of CRC test result worry were perceived susceptibility (aOR = 1.2, 95% CI [1.1, 1.3) and marital status (aOR = 2.0, 95% CI [1.1, 3.7] for married/partnered vs. single and aOR = 2.3, 95% CI [1.3, 4.1] for divorced/widowed vs. single). DISCUSSION: Perceived susceptibility consistently predicted the three types of cancer worry, whereas other predictors varied between cancer worry types and in magnitude of association. The three types of cancer worry were generally predicted by health beliefs, suggesting potential malleability. Future research should include multiple measures of cancer worry and clear definitions of how cancer worry is measured.

A randomized controlled trial of a multicomponent, targeted, low-literacy educational intervention compared with a nontargeted intervention to boost colorectal cancer screening with fecal immunochemical testing in community clinics.

BACKGROUND: The objective of the current study was to improve colorectal cancer (CRC) screening uptake with the fecal immunochemical test (FIT). The current study investigated the differential impact of a multicomponent, targeted, low-literacy educational intervention compared with a standard, nontargeted educational intervention. METHODS: Patients aged 50 to 75 years who were of average CRC risk and not up-to-date with CRC screening were recruited from either a federally qualified health center or a primary care community health clinic. Patients were randomized to the intervention condition (targeted photonovella booklet/DVD plus FIT kit) or comparison condition (standard Centers for Disease Control and Prevention brochure plus FIT kit). The main outcome was screening with FIT within 180 days of delivery of the intervention. RESULTS: Of the 416 participants, 54% were female; the participants were racially and ethnically diverse (66% white, 10% Hispanic, and 28% African American), predominantly of low income, and insured (the majority had county health insurance). Overall, the FIT completion rate was 81%, with 78.1% of participants in the intervention versus 83.5% of those in the comparison condition completing FIT (P = .17). In multivariate analysis, having health insurance was found to be the primary factor predicting a lack of FIT screening (adjusted odds ratio, 2.10; 95% confidence interval, 1.04-4.26 [P = .04]). CONCLUSIONS: The multicomponent, targeted, low-literacy materials were not found to be significantly different or more effective in increasing FIT uptake compared with the nontargeted materials. Provision of a FIT test plus education may provide a key impetus to improve the completion of CRC screening. The type of educational material (targeted vs nontargeted) may matter less. The findings of the current study provide a unique opportunity for clinics to adopt FIT and to choose the type of patient education materials based on clinic, provider, and patient preferences. Cancer 2017;123:1390-1400. © 2016 American Cancer Society.

Health Literacy among Medically Underserved: The Role of Demographic Factors, Social Influence, and Religious Beliefs.

The current study examined the sociodemographic and psychosocial variables that predicted being at risk for low health literacy among a population of racially and ethnically diverse patients accessing primary care services at community-based clinics. Participants (N = 416) were aged 50-75 years, currently not up-to-date with colorectal cancer (CRC) screening, at average CRC risk, and enrolled in a randomized controlled trial (RCT) aimed at promoting CRC screening. Participants completed a baseline interview that assessed health literacy as measured by Rapid Estimate of Adult Literacy in Medicine-Revised, sociodemographic factors, and psychosocial variables (e.g., health beliefs) prior to randomization and receipt of an intervention. Thirty-six percent of the participants were found to be at risk for low health literacy. Sociodemographic and psychosocial variables were assessed as predictors of being at risk for low health literacy using logistic regression. In the final model, predictors were male gender, being from a racial/ethnic minority group, being unable to work, having higher social influence scores, and having higher religious belief scores. These findings suggest several patient characteristics that may be associated with low health literacy, and highlight the importance of supporting all patients through simplified and clear communications and information to improve understanding of CRC screening information.

A community-based trial of educational interventions with fecal immunochemical tests for colorectal cancer screening uptake among blacks in community settings.

BACKGROUND: Intervention studies among individuals in diverse community settings are needed to reduce health disparities in colorectal cancer (CRC) screening and mortality rates. The current study compared the efficacy of 2 intervention conditions promoting CRC screening among black individuals. METHODS: Black individuals ages 50 to 75 years (N = 330) were recruited in community settings in 4 Tampa Bay counties. After obtaining consent and conducting a baseline interview to assess sociodemographic and health-related variables, participants received either a culturally targeted CRC photonovella booklet plus a fecal immunochemical test (FIT) kit or a standard CRC screening brochure plus an FIT kit. The primary outcome was FIT kit screening uptake. RESULTS: FIT screening uptake at 6 months was 86.7% overall (90.3% in the brochure group and 81.9% in the photonovella group). Controlling for baseline between-group differences, there was no influence of intervention on FIT kit uptake (P = .756). Significant predictors of not returning an FIT kit included being unable to work (P = .010), having higher religious belief scores (P = .015), and living farther from the cancer center (P = .015). CONCLUSIONS: Providing FIT kits and educational print materials to black individuals in community settings resulted in high rates of CRC screening. The study also identified subgroups of participants who were less likely to return an FIT kit and provides insight for future interventions. Cancer 2016;122:3288-3296. © 2016 American Cancer Society.

Lessons Learned from Implementing a Prostate Cancer Risk Assessment Program for Underserved High-Risk Men in the Community: the Prostate REACH Project.

Prostate cancer disproportionately affects Black men, who may also encounter barriers to participation in prostate cancer risk assessment. The Prostate Risk, Education and Assessment in the Community with Help (REACH) project was a community-based extension of a comprehensive prostate cancer risk assessment program at a comprehensive cancer center. The goals of the REACH project were the following: (1) establish a community prostate cancer risk assessment clinic, (2) conduct targeted recruitment, and (3) provide navigation services including follow-up for uninsured men. Key implementation steps included the following: (1) choosing a clinic site, (2) establishing patient access procedures, (3) establishing navigator services, (4) developing subsidy fund use guidelines, and (5) designing recruitment and promotion. Through community-based promotion, 64 men inquired about the program and 26 (41 %) participated. Of those screened, 46 % had abnormal results, and 2 men were diagnosed with prostate cancer. Here, we describe a unique demonstration project to implement a comprehensive prostate cancer risk assessment program in an underserved Black community and describe successes and challenges to inform future efforts to promote access to underserved men.

Patients' perceptions of colorectal cancer screening tests and preparatory education in federally qualified health centers.

This study explored federally qualified health center (FQHC) patients' perceptions about colorectal cancer screening (CRCS) tests, including immunochemical fecal occult blood tests (iFOBT), as well as preferences for receiving in-clinic education about CRCS. Eight mixed gender focus groups were conducted with 53 patients. Findings centered on three thematic factors: (1) motivators and impediments to CRCS, (2) test-specific preferences and receptivity to iFOBTs, and (3) preferences for entertaining and engaging plain language materials. Results informed the development of educational priming materials to increase CRCS using iFOBT in FQHCs.

Use and taxonomy of social media in cancer-related research: a systematic review.

Little is known about how social media are used in cancer care. We conducted a systematic review of the use and taxonomy of social media in cancer-related studies, in PubMed, Web of Knowledge, CINAHL, and Google Scholar. We located 1350 articles published through October 2013; 69 met study inclusion criteria. Early research (1996-2007) was predominantly descriptive studies of online forums. Later, researchers began analyzing blogs, videos shared on YouTube, and social networking sites. Most studies (n = 62) were descriptive, and only 7 reported intervention studies published since 2010. Future research should include more intervention studies to determine how social media can influence behavior, and more empirical research is needed on how social media may be used to reduce health disparities.

Making it work: health care provider perspectives on strategies to increase colorectal cancer screening in federally qualified health centers.

Colorectal cancer screening (CRCS) rates are low among men and women who seek health care at federally qualified health centers (FQHCs). This study explores health care providers' perspectives about their patient's motivators and impediments to CRCS and receptivity to preparatory education. A mixed methods design consisting of in-depth interviews, focus groups, and a short survey is used in this study. The participants of this study are 17 health care providers practicing in FQHCs in the Tampa Bay area. Test-specific patient impediments and motivations were identified including fear of abnormal findings, importance of offering less invasive fecal occult blood tests, and need for patient-centered test-specific educational materials in clinics. Opportunities to improve provider practices were identified including providers' reliance on patients' report of symptoms as a cue to recommend CRCS and overemphasis of clinic-based guaiac stool tests. This study adds to the literature on CRCS test-specific motivators and impediments. Providers offered unique approaches for motivating patients to follow through with recommended CRCS and were receptive to in-clinic patient education. Findings readily inform the design of educational materials and interventions to increase CRCS in FQHCs.

Validation of the group-based medical mistrust scale among urban black men.

BACKGROUND: Socioculturally relevant measures of medical mistrust are needed to better address health disparities, especially among Black men, a group with lower life expectancy and higher death rates compared to other race/gender groups. OBJECTIVES: The study aim was to investigate the psychometric properties of the Group-Based Medical Mistrust Scale (GBMMS) in a Black male sample. DESIGN: Data were collected as part of a randomized controlled trial testing educational strategies to support Black men's decisions about prostate cancer screening. PARTICIPANTS: Participants included 201 Black men ages 40-75 years recruited in New York City during 2006-2007. MAIN MEASURES: The primary measures included: race-based medical mistrust, health care participation, avoidance of health care, perceived access to health care, health care satisfaction, racial identity, residential racial segregation, attitudes towards prostate cancer screening, and past prostate cancer screening behavior. KEY RESULTS: An exploratory factor analysis suggested a three-factor structure. Confirmatory factor analysis supported the three-factor model. Internal consistency was high for the total GBMMS and the three sub-scales: Suspicion, Discrimination, and Lack of Support. Construct validity was supported by: significant positive correlations between GBMMS and avoidance of health care and racial identity as well as significant negative correlations with health care access, health care satisfaction, and attitudes about prostate cancer screening. ANOVA showed that the GBMMS was associated with greater residential racial segregation. Higher total GBMMS scores were associated with not visiting a physician in the last year and not having a regular physician. CONCLUSIONS: The present findings provide strong additional evidence that the GBMMS is a valid and reliable measure that may be used among urban Black men.

Pros and cons of prostate cancer screening: associations with screening knowledge and attitudes among urban African American men.

Discussion of the pros and cons of prostate cancer screening tests, rather than routine screening, is recommended to support informed screening decisions, particularly among African American men. This study explored physician explanation of pros and cons of the prostate-specific antigen (PSA) test and digital rectal exam (DRE) and its association with knowledge and screening attitudes. Two hundred-one African American men were asked if a physician had ever provided a comprehensive explanation of pros and cons of the PSA test and DRE. All men completed a 10-item prostate cancer knowledge scale and a subset completed a 26-item attitudes measure. Only 13% of the sample reported receiving a comprehensive explanation. Also, prostate cancer knowledge in the sample was low (mean = 43% correct). Multivariate analyses revealed that total prostate cancer knowledge was associated with men receiving a comprehensive explanation (p = .05), as well as past prostate cancer screening (p = .02) and younger age (p = .009). Although comprehensive explanation of prostate cancer screening was related to total prostate cancer knowledge, it was unrelated to a subset of items that may be central to fully informed screening decisions. Furthermore, comprehensive explanation of prostate cancer screening (p = .02), along with DRE recommendation (p = .009) and older age (p = .02), were related to fewer negative screening attitudes. Findings suggest that continued focus on patient education and physician communication is warranted.

Editor's Choice: Deliberative and non-deliberative effects of descriptive and injunctive norms on cancer screening behaviors among African Americans.

Objective: Two longitudinal studies examined whether effects of subjective norms on secondary cancer prevention behaviors were stronger and more likely to non-deliberative (i.e., partially independent of behavioral intentions) for African Americans (AAs) compared to European Americans (EAs), and whether the effects were moderated by racial identity. Design: Study 1 examined between-race differences in predictors of physician communication following receipt of notifications about breast density. Study 2 examined predictors of prostate cancer screening among AA men who had not been previously screened.Main Outcome Measures: Participants' injunctive and descriptive normative perceptions; racial identity (Study 2); self-reported physician communication (Study 1) and PSA testing (Study 2) behaviors at follow up. Results: In Study 1, subjective norms were significantly associated with behaviors for AAs, but not for EAs. Moreover, there were significant non-deliberative effects of norms for AAs. In Study 2, there was further evidence of non-deliberative effects of subjective norms for AAs. Non-deliberative effects of descriptive norms were stronger for AAs who more strongly identified with their racial group. Conclusion: Subjective norms, effects of which are non-deliberative and heightened by racial identity, may be a uniquely robust predictor of secondary cancer prevention behaviors for AAs. Implications for targeted screening interventions are discussed.

Demographic and psychosocial factors associated with limited health literacy in a community-based sample of older Black Americans.

OBJECTIVES: Individuals with limited health literacy often experience suboptimal health outcomes. This study examined the frequency of limited health literacy and demographic and psychosocial factors associated with limited health literacy in a sample of older Black Americans. METHODS: Participants (n = 330) enrolled in a community-based intervention to promote colorectal cancer (CRC) screening completed baseline surveys assessing health literacy with the Rapid Estimate of Adult Literacy in Medicine, Revised (REALM-R) test, CRC awareness, cancer fatalism, Preventive Health Model (PHM) constructs, and demographics. RESULTS: Approximately 52% of participants had limited health literacy, the REALM-R score was 5.4 (SD = 2.7). Univariable correlates of limited health literacy were gender, employment, income, prior screening, cancer fatalism, CRC awareness, and PHM constructs (religious beliefs, salience/coherence, perceived susceptibility). Multivariable correlates of limited health literacy were male gender (OR = 2.3, CI = 1.4-3.8), unable to work (OR = 2.8, CI = 1.3-6.1), lower household income (OR = 3.0, CI = 1.6, 5.5), and higher PHM religious beliefs (OR = 1.1, CI = 1.0-1.2). CONCLUSION: Limited health literacy was associated with multiple complex factors. Interventions should incorporate patient health literacy and low-literacy materials that can be delivered through multiple channels. PRACTICE IMPLICATIONS: Future studies are needed to understand the role of health literacy in an individual's health behavior and the provision of effective healthcare.

Patient and Physician Factors Associated with Undisclosed Prostate Cancer Screening in a Sample of Predominantly Immigrant Black Men.

Medical guidelines do not recommend prostate cancer screening, particularly without informed and shared decision making. This study investigates undisclosed opportunistic screening using prostate specific antigen (PSA) testing in black immigrant and African American men. Participants (N = 142) were insured urban men, 45- to 70-years old. Patients' reports of testing were compared with medical claims to assess undisclosed PSA testing. Most (94.4 %) men preferred to share in screening decisions, but few (46.5 %) were aware PSA testing was performed. Four factors predicted being unaware of testing: low formal education, low knowledge about prostate cancer, no intention to screen, and no physician recommendation (all p's < .05). Undisclosed PSA testing was common. Both patient and provider factors increased risk of being uninformed about prostate cancer screening. Interventions combining patient education and physician engagement in shared decision making may better align practice with current prostate cancer screening guidelines.

Perceptions of Prostate Cancer Screening Controversy and Informed Decision Making: Implications for Development of a Targeted Decision Aid for Unaffected Male First-Degree Relatives.

PURPOSE: First-degree relatives (FDRs) of prostate cancer (PC) patients should consider multiple concurrent personal risk factors when engaging in informed decision making (IDM) about PC screening. This study assessed perceptions of IDM recommendations and risk-appropriate strategies for IDM among FDRs of varied race/ethnicity. DESIGN: A cross-sectional, qualitative study design was used. SETTING: Study setting was a cancer center in southwest Florida. PARTICIPANTS: The study comprised 44 participants (24 PC patients and 20 unaffected FDRs). METHOD: Focus groups and individual interviews were conducted and analyzed using content analysis and constant comparison methods. RESULTS: Patients and FDRs found the PC screening debate and IDM recommendations to be complex and counterintuitive. They overwhelmingly believed screening saves lives and does not have associated harms. There was a strongly expressed need to improve communication between patients and FDRs. A single decision aid that addresses the needs of all FDRs, rather than one separating by race/ethnicity, was recommended as sufficient by study participants. These perspectives guided the development of an innovative decision aid that deconstructs the screening controversy and IDM processes into simpler concepts and provides step-by-step strategies for FDRs to engage in IDM. CONCLUSION: Implementing IDM among FDRs is challenging because the IDM paradigm departs from historical messages promoting routine screening. These contradictions should be recognized and addressed for men to participate effectively in IDM. A randomized pilot study evaluating outcomes of the resulting decision aid is underway.