The Development of a Digital Patient Navigation Tool to Increase Colorectal Cancer Screening Among Federally Qualified Health Center Patients: Acceptability and Usability Testing.

BACKGROUND: Federally Qualified Health Centers (FQHCs) are an essential place for historically underserved patients to access health care, including screening for colorectal cancer (CRC), one of the leading causes of cancer death in the United States. Novel interventions aimed at increasing CRC screening completion rates at FQHCs are crucial. OBJECTIVE: This study conducts user testing of a digital patient navigation tool, called eNav, designed to support FQHC patients in preparing for, requesting, and completing CRC screening tests. METHODS: We recruited English- and Spanish-speaking patients (N=20) at an FQHC in New York City to user-test the eNav website (2 user tests; n=10 participants per user test). In each user test, participants engaged in a "think aloud" exercise and a qualitative interview to summarize and review their feedback. They also completed a baseline questionnaire gathering data about demographics, technology and internet use, medical history, and health literacy, and completed surveys to assess the website's acceptability and usability. Based on participant feedback from the first user test, we modified the eNav website for a second round of testing. Then, feedback from the second user test was used to modify and finalize the eNav website. RESULTS: Survey results supported the overall usability and acceptability of the website. The average System Usability Scale score for our first user test was 75.25; for the second, it was 75.28. The average Acceptability E-scale score for our first user test was 28.3; for the second, it was 29.2. These scores meet suggested benchmarks for usability and acceptability. During qualitative think-aloud exercises, in both user tests, many participants favorably perceived the website as motivating, interesting, informative, and user-friendly. Respondents also gave suggestions on how to improve the website's content, usability, accessibility, and appeal. We found that some participants did not have the digital devices or internet access needed to interact with the eNav website at home. CONCLUSIONS: Based on participant feedback on the eNav website and reported limitations to digital access across both user tests, we made modifications to the content and design of the website. We also designed alternative methods of engagement with eNav to increase the tool's usability, accessibility, and impact for patients with diverse needs, including those with limited access to devices or the internet at home. Next, we will test the eNav intervention in a randomized controlled trial to evaluate the efficacy of the eNav website for improving CRC screening uptake among patients treated at FQHCs.

Safety of Immunosuppression in a Prospective Cohort of Inflammatory Bowel Disease Patients With a HIstoRy of CancEr: SAPPHIRE Registry.

BACKGROUND & AIMS: In patients with inflammatory bowel disease (IBD) and a history of cancer, retrospective studies have suggested that exposure to immunosuppressive agents does not increase the risk of incident (recurrent or new) cancer compared with unexposed patients. SAPPHIRE is a prospective registry aimed at addressing this issue. METHODS: Since 2016, patients with IBD and confirmed index cancer before enrollment were followed up annually. Patients receiving chemotherapy or radiation at enrollment, or recurrent cancer within 5 years, were excluded. The primary outcome was development of incident cancer related to exposure to immunosuppressive medications. RESULTS: Among 305 patients (47% male, 88% white), the median age at IBD diagnosis and cancer were 32 and 52 years, respectively. Index cancers were solid organ (46%), dermatologic (32%), gastrointestinal (13%), and hematologic (9%). During a median follow-up period of 4.8 years, 210 patients (69%) were exposed to immunosuppressive therapy and 46 patients (15%) developed incident cancers (25 new, 21 recurrent). In unadjusted analysis, the crude rate of incident cancer in unexposed patients was 2.58 per 100 person-years vs 4.78 per 100 person-years (relative risk, 1.85; 95% CI, 0.92-3.73) for immunosuppression-exposed patients. In a proportional hazards model adjusting for sex, smoking history, age and stage at index malignancy, and nonmelanoma skin cancer, no significant association was found between receipt of immunosuppression and incident cancer (adjusted hazard ratio, 1.41; 95% CI, 0.69-2.90), or with any major drug class. CONCLUSIONS: In this interim analysis of patients with IBD and a history of cancer, despite numerically increased adjusted hazard ratios, we did not find a statistically significant association between subsequent exposure to immunosuppressive therapies and development of incident cancers.

An Analysis of Chaplains' Narrative Chart Notes Describing Spiritual Care Visits with Gender Affirmation Surgical Patients.

Purpose: The benefit of spiritual care for patients is well described, but little is known about the role of spiritual care in transgender and nonbinary patients recovering from gender affirming surgeries (GASs). Methods: A single-center retrospective chart review was performed on patients who underwent GAS in 2017. Demographic information, surgery type, and chaplains' narrative notes were examined. Results: A total of 145 chaplain visits were identified in 103 inpatient stays among 98 patients at the Mount Sinai Center for Transgender Medicine and Surgery in New York. Analysis was performed on narrative notes authored by a single chaplain, which included 132 visits among 78 transfeminine and 11 transmasculine patients. Fifty-four patients (61%) expressed gratitude for the chaplain visit and/or hospital experience overall. Seven patients (8%) described movement between religious denominations over the course of their lives, and 7 (8%) described supportive belief systems. Fifty-seven patients (64%) had a family member or friend present during the perioperative process, 13 (15%) described support systems, and 9 (10%) described supportive practices, activities, and/or coping methods. Twenty-one patients (24%) expressed concerns about current symptoms or the recovery process, and 32 (36%) received a prayer or blessing from the chaplain. Fifty-two patients (58%) consented to a follow-up call. Conclusion: Almost 50% of patients expressed gratitude for the chaplain's visit and more than half consented to a follow-up call from the chaplain, suggesting a chaplain can provide a welcome layer of support to postoperative GAS patients. The authors recommend integrating spiritual care into perioperative care.

Promoting colonoscopy screening among low-income Latinos at average risk of colorectal cancer: A randomized clinical trial.

BACKGROUND: Screening colonoscopy (SC) for colorectal cancer (CRC) is underused by Latino individuals. The current randomized clinical trial examined the impact of 3 interventions: 1) patient navigation; 2) patient navigation plus standard Centers for Disease Control and Prevention print materials; and 3) patient navigation plus culturally targeted print materials for Latinos referred for SC. Demographic, personal and health history, and psychometric factors associated with SC also were examined. METHODS: A total of 344 urban Latino individuals aged 50 to 85 years with no personal and/or immediate family history of CRC diagnosed before age 60 years, no personal history of a gastrointestinal disorder, no colonoscopy within the past 5 years, with insurance coverage, and with a referral for SC were consented. Participants were randomized to patient navigation (20%), patient navigation plus standard Centers for Disease Control and Prevention print materials (40%), and patient navigation plus culturally targeted print materials (40%). The completion of SC was assessed at 12 months. RESULTS: The interventions had an overall SC rate of 82%. Counterintuitively, patients with an average income of <$10,000 were found to have higher SC rates (87%) than those with a greater income (75%). CONCLUSIONS: The addition of standard or culturally targeted print materials did not appear to increase SC rates above those for patient navigation. Indeed, after controlling for other variables, culturally targeted print materials were found to be associated with lower SC rates among Puerto Rican individuals.

The Role of Incarceration and Reentry on Colorectal Cancer Screening Among Formerly Incarcerated Black and Hispanic-Latino Men in New York City.

In the USA, the rate of incarceration has steadily increased from 1980 to 2010, a period called mass incarceration. Incarcerated individuals are now leaving the jail system in large numbers, the majority of whom are returning to low-income and Black and Hispanic-Latino communities. Although highly preventable, colorectal cancer (CRC) is a significant risk for minority and underserved men over the age of 50. Black men have the highest CRC incidence and mortality rates, which can be prevented and treated effectively when detected early, especially via colonoscopy. Hispanic-Latino men have the third highest CRC incidence rates and the fourth highest mortality rates. This qualitative study seeks to examine how the experience of incarceration and reintegration affects the awareness of CRC screening practices, the attitudes towards these services, the availability of services, and the frequency of CRC screening among the recently released Black and Hispanic-Latino men over the age of 50 in New York City.

Adenoma Prevalence and Distribution Among US Latino Subgroups Undergoing Screening Colonoscopy.

BACKGROUND: Colorectal cancer (CRC) is the second leading malignancy diagnosed among US Latinos. Latinos in the USA represent a heterogeneous amalgam of subgroups varying in genetic background, culture, and socioeconomic status. Little is known about the frequency of CRC precursor lesions found at screening colonoscopy among Latino subgroups. AIM: The aim was to determine the prevalence and distribution of histologically confirmed adenomas found at screening colonoscopy among average-risk, asymptomatic US Latinos according to their subgroup and socio-demographic background. METHODS: Cross-sectional analysis of pathological findings resulting from screening colonoscopy among average-risk, asymptomatic US Latinos aged ≥50 in two prospective randomized controlled trials at an academic medical center. RESULTS: Among the 561 Latinos who completed screening colonoscopy, the two largest subgroups were Puerto Ricans and Dominicans. The findings among both subgroups were: adenomas 30.6%, proximal adenomas 23.5%, advanced adenomas 12.0%, and proximal advanced adenomas 8.9%. These rates are at least as high as those found at screening colonoscopy among US whites. While Puerto Ricans were more likely than Dominicans to be born in the USA, speak English, be acculturated, have a smoking history, and be obese, there were no significant differences in adenoma rates between these subgroups. CONCLUSIONS: The prevalence of adenomas, advanced adenomas, and proximal neoplasia was high among both subgroups. These findings have implications for CRC screening and surveillance among the increasingly growing Latino population in the USA.

Increasing referral rate for screening colonoscopy through patient education and activation at a primary care clinic in New York City.

OBJECTIVE: Colorectal cancer could be prevented through regular screening. Individuals age 50 and older are recommended to get screened via colonoscopy. Because physician referral is a major predictor of colonoscopy completion, two low-cost, evidence-based interventions were tested to increase referrals by activating patients to self-advocate. METHODS: This study compared the impact of a pre-visit educational handout that prompts patients to discuss colonoscopy with their physician with the handout plus brief counseling through exit interviews and chart reviews. The main outcome was physician referral. RESULTS: Medical charts were reviewed for eligibility: 130 control patients (Arm 1), 45 patients who received the educational handout and health counseling (Arm 2), and 50 patients who received only the handout (Arm 3). Colonoscopy referral rates increased from 24.6% in Arm 1 to 44.4% and 52.0% in Arms 2 and 3, respectively (p=0.001). The proportion of exit interview participants who discussed colonoscopy with their doctor increased from 68.8% in Arm 1 to 76.5% and 88.9% in Arms 2 and 3, respectively. CONCLUSIONS: Results indicate that both interventions are effective at increasing colonoscopy referrals. PRACTICAL IMPLICATIONS: Results suggest that an educational handout alone is sufficient in prompting patient-initiated discussions about colonoscopy.

Examining the Impact of Latino Nativity, Migration, and Acculturation Factors on Colonoscopy Screening.

Latinos are a diverse population comprised of multiple countries of origin with varying cultural profiles. This study examines differences in colonoscopy completion across place of birth and migration-related factors in a sample of predominantly Dominican and Puerto Rican Latinos living in New York City after receiving a recommendation for colonoscopy screening and navigation services. The sample included 702 Latinos recruited for two cancer screening projects targeting Latinos eligible for colonoscopy who seek healthcare in New York City. Participants completed a survey that included sociodemographic, health-related questions, psychosocial assessments and cancer screening practices, in Spanish or English. Migration, acculturation, and language factors were found to predict colonoscopy completion. The results indicated that Latinos born in the Dominican Republic and Central America were more likely to complete a screening colonoscopy than their counterparts born in the US. Further, those who emigrated at an older age, who have resided in the US for less than 20 years, preferred Spanish and those with lower US acculturation levels were also more likely to complete a screening colonoscopy. The findings suggest that Latinos who are less acculturated to the US are more likely to complete a screening colonoscopy after receiving a physician recommendation for colonoscopy screening. The results provide important information that can inform clinical practice and public health interventions. Continued attention to cultural and migration influences are important areas for cancer screening intervention development.

Adaptation of a Cancer Clinical Trials Education Program for African American and Latina/o Community Members.

The pilot study reported in this article culturally and linguistically adapted an educational intervention to promote cancer clinical trials (CCTs) participation among Latinas/os and African Americans. The single-session slide presentation with embedded videos, originally developed through a campus-community partnership in Southern California, was chosen for adaptation because it was perceived to fit the CORRECT model of innovation (credible, observable, relevant, relatively advantageous, easy to understand, compatible, and testable) and because of the potential to customize any components not identified as core, allowing them to be revised for cultural and linguistic alignment in New York City. Most of the 143 community participants (76.2%) were female; most (54.6%) were older than 59 years. More than half (78.3%) preferred to speak English or were bilingual in English and Spanish. A large proportion (41.3%) had not completed high school. Knowledge and perceived benefits and barriers regarding CCT showed small, though statistically significant, increases. There were no statistically significant group differences for changes in mean knowledge, perceived benefits, or perceived barriers when examined by ethnicity, education level, language, or other included sociodemographic variables. However, a small, but statistically significant difference in perceived barriers was observed when examined by country of origin, with the foreign born score worsening 0.08 points (SD = 0.47, p = .007) on the 5-point Likert-type scale administered posteducation compared to preeducation. Participants' open-ended comments demonstrated the acceptability of the topic and intervention. This adaptation resulted in an intervention with the potential to educate African American and Latina/o general community members in a new geographic region about the purpose, methods, and benefits of CCTs.

Narrative message targets within the decision-making process to undergo screening colonoscopy among Latinos: a qualitative study.

Colorectal cancer (CRC) is a preventable yet leading cause of cancer mortality among Latinos in the USA. Cultural targeting and narrative messaging are two strategies to increase the low screening colonoscopy rates among Latinos. This study identifies key messages for educational interventions aiming to increase screening colonoscopy used among Latinos and proposes a model to understand the relationship between factors involved in colonoscopy decision-making. Individual in-depth interviews were conducted with 12 Latino participants primarily of Puerto Rican descent on the topics of CRC knowledge, barriers and facilitators to colonoscopy use, and the use of narrative in colorectal health messaging. Knowledge about colorectal anatomy and the anesthesia component of colonoscopy procedure is low. Fear of procedure-related pain and fear of treatment-related burden following a cancer diagnosis are significant barriers to colonoscopy. Fear of disease-related suffering and death following a cancer diagnosis and fear of regret are strong facilitators and can be augmented by cancer narratives. Storytelling is commonly used in Latino culture and is an acceptable method to educate the Latino community about CRC screening via colonoscopy. Machismo is a unique barrier to colonoscopy for Latino men via homophobia and reluctance to seek healthcare. A preliminary model to understand factors in colonoscopy decision-making among Latinos is presented. Counseling practices and educational interventions that use culturally targeted narrative health messaging to mediate fears and increase colonoscopy knowledge may increase screening colonoscopy use among Latinos.

BRCA genetic counseling among at-risk Latinas in New York City: new beliefs shape new generation.

Despite the life-saving information that genetic counseling can provide for women at hereditary breast and/or ovarian cancer (HBOC) risk, Latinas disproportionately underuse such services. Understanding Latinas' beliefs and attitudes about BRCA genetic counseling may be the key to better health promotion within this underserved, at-risk group. We conducted 12 focus groups (N = 54) with at-risk Latina women in New York City, followed by 30 in-depth interviews among a subset of the focus group women. Both were professionally transcribed, translated where applicable and data analysis was completed by two coders trained in qualitative methods. Results revealed personal and community knowledge about BRCA genetic counseling was relatively low, although women felt largely positive about counseling. The main motivator to undergo genetic counseling was concerns about learning family members' cancer status, while the main barrier was competing demands. Generational differences were apparent, with younger women (approximately <55 years) reporting that they were more interested in educating themselves about counseling and other ways to prevent cancer. Younger women were also less likely to ascribe to traditionally Latino-centered cultural beliefs which could serve as barriers (e.g. machismo, fatalismo, destino) to undergoing genetic counseling. Participants were largely enthusiastic about educational efforts to increase awareness of genetic counseling among Latinos. Revealing the beliefs and attitudes of underserved Latinas may help shape culturally appropriate educational materials and promotion programs to increase BRCA genetic counseling uptake within this underrepresented community.

Increasing colonoscopy screening for Latino Americans through a patient navigation model: a randomized clinical trial.

Latinos have a higher rate of mortality and lower rate of colorectal cancer (CRC) screening than most racial groups in the United States. This study examines the predictors of screening colonoscopy (SC) for CRC among Latinos in a patient navigation (PN) intervention. Participants were randomized to either a culturally-targeted PN group (n = 225) or a standard PN group (n = 167). Each completed an interview assessing sociodemographic and intrapersonal information. There was no difference in SC completion between PN groups (80.9 and 79.0 %). Logistic regression revealed that low language acculturation (OR = 2.22) and annual income above $10,000 (OR = 1.97) were independent predictors of completion. Both standard and culturally-targeted PN successfully increased SC completion by nearly 30 % above the recent estimation for physician-referred patients. Our findings suggest a need to further reduce barriers to SC in low income and highly acculturated Latino groups.

Colorectal cancer screening brochure for Latinos: focus group evaluation.

Colorectal cancer (CRC) can be effectively prevented via screening colonoscopy, yet adherence rates remain low among Latinos. Interventions targeting individual and cultural barriers to screening are needed. We developed an educational brochure to target these barriers faced by a diverse Latino population. The objective was to evaluate the responses of the target population to the culturally and theoretically informed brochure through community member focus groups. Facilitators conducted six focus groups, stratified by gender, language, and prior colonoscopy experience. Topics included: brochure content and layout, cancer knowledge, and CRC screening determinants. Focus groups documented community members' responses to the brochure's overall message and its informational and visual components. Changes to wording, visual aids, and content were suggested to make the brochure culturally more acceptable. Results indicated relevance of the theoretically and culturally guided approach to the development of the brochure leading to refinement of its content and design.

Implementation of culturally targeted patient navigation system for screening colonoscopy in a direct referral system.

Low-income minorities often face system-based and personal barriers to screening colonoscopy (SC). Culturally targeted patient navigation (CTPN) programs employing professional navigators (Pro-PNs) or community-based peer navigators (Peer-PNs) can help overcome barriers but are not widely implemented. In East Harlem, NY, USA, where approximately half the residents participate in SC, 315 African American patients referred for SC at a primary care clinic with a Direct Endoscopic Referral System were recruited between May 2008 and May 2010. After medical clearance, 240 were randomized to receive CTPN delivered by a Pro-PN (n = 106) or Peer-PN (n = 134). Successful navigation was measured by SC adherence rate, patient satisfaction and navigator trust. Study enrollment was 91.4% with no significant differences in SC adherence rates between Pro-PN (80.0%) and Peer-PN (71.3%) (P = 0.178). Participants in both groups reported high levels of satisfaction and trust. These findings suggest that CTPN Pro-PN and Peer-PN programs are effective in this urban primary care setting. We detail how we recruited and trained navigators, how CTPN was implemented and provide a preliminary answer to our questions of the study aims: can peer navigators be as effective as professionals and what is the potential impact of patient navigation on screening adherence?

Cancer care in East and Central Harlem: community partnership needs assessment.

In the largely African American and Hispanic communities of East and Central Harlem in New York City (NYC), health inequities are glaring. Mortality from cancer is 20-30 % higher than in Manhattan and 30-40 % higher than rates in the general population in NYC. Despite advances in risk assessment, early detection, treatment, and survivorship, individuals in Harlem and similar urban communities are not benefiting equally. Guided by community-based participatory research, this study serves as an important step in understanding cancer care needs and the range of factors that impact the disparate rates of cancer in East and Central Harlem. Forty individual interviews were conducted with community leaders and residents. Major themes included: need for appropriate supportive services; health care access and financial challenges; beliefs related to stigma, trust, and accountability; and the impact of the physical environment on health. Education was seen as a critical area of need and intervention.

Screening adherence for colorectal cancer among immigrant Hispanic women.

PURPOSE: We sought to assess factors related to colorectal cancer (CRC) screening adherence among immigrant, Hispanic women in Harlem, New York City. METHOD: Adherence for colonoscopy and fecal occult blood test (FQBT) screening was measured among 255 women based on self-reported screening behaviors using American Cancer Society guidelines. RESULTS: Univariate results showed that age, language of the interview (English/Spanish), years in the United States, physician recommendation for either test, marital status (living alone/living with someone), and mammography adherence were associated with CRC screening adherence (p's < .05). In the multivariate analysis, having an age greater than 65 years, being interviewed in Spanish, having lived in the United States longer, having a regular doctor and a physician recommendation, and being currently adherent for mammography were associated with higher CRC screening adherence. CONCLUSION: Among this sample, there proved to be differences between having ever been screened and adherence with a greater proportion of women having ever completed either colonoscopy and/or FOBT compared to women who were adherent (72.9% vs 58.8%). Therefore, it is important to determine factors associated with adherence, not just screening utilization, in order to design strategies to increase adherence among immigrant Hispanic women.

The influence of sociocultural factors on colonoscopy and FOBT screening adherence among low-income Hispanics.

Few studies have examined barriers and facilitators to colorectal cancer (CRC) screening among Hispanics, particularly sociocultural factors that may be relevant. This paper examines the influence of sociocultural factors on adherence to fecal occult blood testing (FOBT) and colonoscopy. A survey was conducted among a sample of 400 low-income Hispanics in East Harlem, New York. Fatalism and health literacy were both significantly associated with colonoscopy screening adherence in bivariate models, though fatalism became non-significant and health literacy became less significant in multivariable models. With respect to adherence to colonoscopy or FOBT, both fatalism and health literacy were associated in bivariate models, though only fatalism remained significant in multivariable models (p=.03; OR: .94; 95% CI: .881-.992). These findings suggest fatalism and health literacy may play a role in shaping CRC screening adherence among low-income Hispanics. Researchers should continue investigating how sociocultural factors influence screening adherence among Hispanics, using larger and more geographically diverse samples.

Training experiences of lay and professional patient navigators for colorectal cancer screening.

Patient navigation (PN) is increasingly used in cancer care, but little is known about the identification and training of patient navigators. PN may be implemented by professional health care providers, paraprofessionals, or lay health workers and, therefore, presents an opportunity to compare professional and lay interventionist experiences. The goal of the current report is to compare the training experiences of four professional (Pro) and five lay (LHW) patient navigators enlisted to increase colonoscopy adherence among African American primary care patients. The results of early assessments showed that LHWs' intervention-related knowledge was significantly lower than that of Pros. However, there were no significant differences in knowledge scores between LHWs and Pros for most subsets of knowledge items in later assessments. Furthermore, there were no significant differences in LHWs' and Pros' reported self-efficacy and satisfaction with training. Findings support the use of diverse strategies to train and prepare LHWs as patient navigators.

Understanding the barriers and facilitators of colorectal cancer screening among low income immigrant hispanics.

Colorectal cancer (CRC) screening rates are low among Hispanics; thus understanding screening barriers and facilitators is essential. A survey, based on blended health promotion theories, was conducted with low income, mostly immigrant, Hispanics at community based organizations and health clinics in New York City. Correlates of undergoing colonoscopy screening were examined. Four hundred men (28%) and women were interviewed. Older age, longer US residence, having a regular health care provider and provider recommendation predicted colonoscopy receipt (P values <0.01). Greater fear and worry concerning colonoscopy and fewer perceived screening benefits were associated with reduced screening likelihood (P values <0.05). In a multivariate model, colonoscopy receipt was negatively associated with Medicaid and positively associated with English preference, physician recommendation for and encouragement of screening and less fear. Interventions that educate physicians and patients regarding colonoscopy screening guidelines, increase physicians' screening referrals, and reduce patients' fear are needed.