A mixed methods evaluation of the unmet needs of early-onset colorectal cancer survivors.

PURPOSE: The incidence of colorectal cancer (CRC) is rising in people under age 50 (early-onset). Early-onset survivors face CRC during a critical point in their lives; many are establishing their families and careers. We sought to identify the unmet needs in a sample of early-onset CRC survivors and the resources they desired to address those needs. METHODS: We conducted a mixed methods study where participants completed the Cancer Survivors Unmet Needs (CaSUN) survey and a subsequent qualitative interview to expand on their unmet needs and desired resources. RESULTS: A total of 12 CRC survivors participated and 83% identified at least one unmet need, with an average of 13 unmet needs reported. Unmet needs were identified across every domain of the CaSUN measure, most commonly in the existential survivorship domain. Qualitative results demonstrated that survivors need more resources tailored for people their age and additional support for their families, including young children. CONCLUSION: Early-onset CRC survivors' needs are framed by the stage of their lives in which they are diagnosed, and the demand for interventions to support these survivors will continue to rise. The results of this study can inform future, tailored interventions for early-onset CRC survivors with substantial needs.

Machine Learning Approach to Facilitate Knowledge Synthesis at the Intersection of Liver Cancer, Epidemiology, and Health Disparities Research.

PURPOSE: Liver cancer is a global challenge, and disparities exist across multiple domains and throughout the disease continuum. However, liver cancer's global epidemiology and etiology are shifting, and the literature is rapidly evolving, presenting a challenge to the synthesis of knowledge needed to identify areas of research needs and to develop research agendas focusing on disparities. Machine learning (ML) techniques can be used to semiautomate the literature review process and improve efficiency. In this study, we detail our approach and provide practical benchmarks for the development of a ML approach to classify literature and extract data at the intersection of three fields: liver cancer, health disparities, and epidemiology. METHODS: We performed a six-phase process including: training (I), validating (II), confirming (III), and performing error analysis (IV) for a ML classifier. We then developed an extraction model (V) and applied it (VI) to the liver cancer literature identified through PubMed. We present precision, recall, F1, and accuracy metrics for the classifier and extraction models as appropriate for each phase of the process. We also provide the results for the application of our extraction model. RESULTS: With limited training data, we achieved a high degree of accuracy for both our classifier and for the extraction model for liver cancer disparities research literature performed using epidemiologic methods. The disparities concept was the most challenging to accurately classify, and concepts that appeared infrequently in our data set were the most difficult to extract. CONCLUSION: We provide a roadmap for using ML to classify and extract comprehensive information on multidisciplinary literature. Our technique can be adapted and modified for other cancers or diseases where disparities persist.

Colorectal cancer knowledge and perceptions among individuals below the age of 50.

BACKGROUND: Colorectal cancer (CRC) rates are increasing in individuals below the age of 50 and this trend has been projected to continue for the foreseeable future. Health officials are calling for increased awareness of rising rates in affected populations to promote discussion and early detection. METHODS: In May 2018, we surveyed an online purposive sample of adults below the age of 50 (N = 624). We conducted an exploratory analysis examining knowledge of current CRC screening guidelines, knowledge of available CRC screening methods, perceived risk of CRC, and perceived importance of screening for CRC by gender, race, and previous CRC screening activity. RESULTS: The sample was 56% female, averaged 36 years of age, largely identified as Caucasian (84%), married (48%), and well educated (70% with some college or a college degree). 36% correctly identified the current age of recommended CRC screening initiation. Few (8%) correctly identified all CRC screening options presented. Genetics was thought to be the most relevant determinant of CRC. African American or black participants perceived themselves to be at lower risk of CRC, while women rated the importance of screening significantly lower than men. CONCLUSION: We identified a lack of CRC knowledge in individuals below the age of 50. Interventions should correct perceptions of risk of CRC and highlight the importance of screening. Complete knowledge of the range of screening options may reduce barriers to screening while a greater knowledge of modifiable risk factors of CRC can promote healthy behaviors.

Neuroticism, cancer mortality salience, and physician avoidance in cancer survivors: Proximity of treatment matters.

OBJECTIVE: To examine if the relationship between neuroticism and physician avoidance/physician visit concerns are mediated by perceptions that cancer is associated with death ("cancer mortality salience"; CMS) for cancer survivors to inform public health interventions and tailored health communications. METHODS: Cancer survivors comprised 42.3% of the total sample (n = 525). Participants completed a 4-item neuroticism scale, 4-item cancer perceptions scale, and 4-item physician avoidance and concerns scale. Multiple linear regression models were used to assess relationships among variables for cancer survivors and separately for those without a history of cancer. RESULTS: Neuroticism was positively associated with CMS for cancer survivors, b = 0.26, (p < 0.001), and those without cancer, b = 0.22, (p < 0.001). There was an association between neuroticism and physician avoidance among cancer survivors with temporally distant treatment courses after controlling for CMS, b = 0.56 (p = 0.006), but not for those currently or recently having had undergone treatment (p = 0.949). There was also an indirect relationship between neuroticism and physician visit concerns that was mediated by CMS for cancer survivors, b = 0.07, CI = [0.03, 0.13], but this relationship was again driven by cancer survivors with more distal treatment courses. CONCLUSIONS: High neuroticism in cancer survivors is associated with physician avoidance and physician visit concerns when treatment is temporally distant. Interventions aimed at decoupling the association between cancer and death can help increase the willingness of cancer survivors to attain cancer care follow-ups and healthcare more generally.

Evaluating preferences for colorectal cancer screening in individuals under age 50 using the Analytic Hierarchy Process.

BACKGROUND: In 2021, the United States Preventive Services Task Force updated their recommendation, stating that individuals ages 45-49 should initiate screening for colorectal cancer. Since several screening strategies are recommended, making a shared decision involves including an individual's preferences. Few studies have included individuals under age 50. In this study, we use a multicriteria decision analysis technique called the Analytic Hierarchy Process to explore preferences for screening strategies and evaluate whether preferences vary by age. METHODS: Participants evaluated a hierarchy with 3 decision alternatives (colonoscopy, fecal immunochemical test, and computed tomography colonography), 3 criteria (test effectiveness, the screening plan, and features of the test) and 7 sub-criteria. We used the linear fit method to calculate consistency ratios and the eigenvector method for group preferences. We conducted sensitivity analysis to assess whether results are robust to change and tested differences in preferences by participant variables using chi-square and analysis of variance. RESULTS: Of the 579 individuals surveyed, 556 (96%) provided complete responses to the AHP portion of the survey. Of these, 247 participants gave responses consistent enough (CR < 0.18) to be included in the final analysis. Participants that were either white or have lower health literacy were more likely to be excluded due to inconsistency. Colonoscopy was the preferred strategy in those < 50 and fecal immunochemical test was preferred by those over age 50 (p = 0.002). These results were consistent when we restricted analysis to individuals ages 45-55 (p = 0.011). Participants rated test effectiveness as the most important criteria for making their decision (weight = 0.555). Sensitivity analysis showed our results were robust to shifts in criteria and sub-criteria weights. CONCLUSIONS: We reveal potential differences in preferences for screening strategies by age that could influence the adoption of screening programs to include individuals under age 50. Researchers and practitioners should consider at-home interventions using the Analytic Hierarchy Process to assist with the formulation of preferences that are key to shared decision-making. The costs associated with different preferences for screening strategies should be explored further if limited resources must be allocated to screen individuals ages 45-49.

News from NHLBI: Nutrition Research at the National Heart, Lung, and Blood Institute and Future Opportunities.

BACKGROUND: Nutrition plays a major role in the prevention and treatment of cardiovascular and other chronic diseases; hence, nutrition research is a priority for the National Heart, Lung, and Blood Institute (NHLBI). The purpose of this analysis is to describe the scope of NHLBI-funded extramural nutrition research grants over the past decade and offer insights into future opportunities for nutrition research relevant to NHLBI's mission. METHODS: Data were extracted using the Research, Condition, and Disease Categorization spending categories from the publicly available NIH Research Portfolio Online Reporting Tool Expenditures and Results. New 2018 and 2019 grants were coded into categories and mapped to the 2016 NHLBI Strategic Vision priorities. RESULTS: Approximately 90% of nutrition research funds supported extramural grants, particularly through investigator-initiated R series grants (69.6%). Of these, 19.8% were classified as clinical trials. Consistent nutrition-related topics, including physical activity, weight loss, fatty acids, metabolic syndrome, childhood obesity, and other topics such as gut microbiota, arterial stiffness, sleep duration, and meal timing, emerged in 2014-2019.  Mapping of the NHLBI Strategic Vision objectives revealed that 32% of newly funded grants focused on pathobiological mechanisms important to the onset and progression of heart, lung, blood, and sleep disorders, with opportunities including developing novel diagnostic and therapeutic strategies and clinical and implementation science research. DISCUSSION: The findings show the breadth of NHLBI-funded nutrition research and highlight potential research opportunities for nutrition scientists.

Development of FamilyTalk: an Intervention to Support Communication and Educate Families About Colorectal Cancer Risk.

IFamily members of individuals with colorectal cancer (CRC) may be at increased risk of developing the disease. However, the majority of CRC can be prevented through colonoscopy screening and family members may not be aware if they are recommended to pursue earlier screening because of their family history of CRC. As such, tools must be developed to effectively communicate potential changes to the recommended age for colonoscopy screening and other important CRC-related information to family members. We modified and adapted a successful intervention for families with melanoma to be appropriate for families with CRC to increase communication and screening in family members. The multistep process included the following: (1) developing a paper version of the intervention, (2) piloting the paper version among families with CRC, (3) developing the web-based version, and (4) testing the intervention for usability. Qualitative data was collected and analyzed for pilot testing. Usability testing utilized both qualitative and quantitative data. Patients with CRC liked the paper version and had multiple suggestions, including adding a better introduction, sections on genetics and family history, and clearer communication assistance. The web-based tool was well received and improved upon the linear book format with links, better section instructions, and more proactive communication tools for families. These processes produced materials that satisfied individuals from various families with assistance and support for communicating about CRC. Evaluating the effects of the tools in rigorous research projects is the next step.

Providers' Perceptions of Barriers to Optimal Communication With Patients During the Postcolonoscopy Experience.

INTRODUCTION: Colonoscopy screening is an effective method of detecting and preventing colorectal cancer. Standard procedure for most colonoscopies (98%) is to use conscious sedation, which can cause short-term cognitive impairment postprocedure, including communication difficulties. In this study, we explored providers' (gastroenterology doctors and nurses) perceptions of the barriers to optimal communication with patients immediately following colonoscopy. METHODS: We conducted interviews with 61 providers across 5 clinical configurations. Interviews were transcribed and coded with NVivo version 11 software. RESULTS: Themes emerged regarding barriers to optimal provider-patient communication postcolonoscopy: patient barriers (sedation and patient characteristics), caregiver barriers, and system characteristics. CONCLUSIONS: Providers' perceived barriers to communication are an important topic to study. They endorsed, in particular, interventions that target the postcolonoscopy time frame when patients may still be sedated, but providers must convey important discharge and follow-up instructions.

Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine.

BACKGROUND: The practice of biorepository-based genetics research raises questions related to what ethical obligations researchers have to their participants. It is important to explore and include the thoughts of current biorepository participants as we move forward with this type of research. METHODS: Thirty participants (17 cancer patients, 7 cancer-free controls, and 6 relatives) were drawn from the Northwest Cancer Genetics Registry and participated in qualitative interviews lasting between 45 and 90 min. Topics explored in this study include which types of genetic test results participants of large biorepositories expect and would like to receive from research analyzing their samples, as well as thoughts on best practice for conducting this type of research. RESULTS: Cancer cases, controls, and first-degree relatives have differing views on what results they would like to receive from biorepository-based research. Participants across all groups attempted to balance the costs and benefits of returning individual research results. DISCUSSION: In the wake of precision medicine, it is important to describe the range of ways participants in large biorepositories both think and talk about the utilization of their specimens for genetics research.

Participant use and communication of findings from exome sequencing: a mixed-methods study.

PURPOSE: This study investigated how genome sequencing results affect health behaviors, affect, and communication. METHODS: We report on 29 participants who received a sequence result in the ClinSeq study, a cohort of well-educated, postreproductive volunteers. A mixed-methods design was used to explore respondents' use, communication, and perceived utility of results. RESULTS: Most participants (72%) shared their result with at least one health-care provider, and 31% reported subsequent changes in the health care they received. Participants scored high on the Positive Experiences subscale and low on the Distress subscale of a modified version of the Multidimensional Impact of Cancer Risk Assessment. The majority (93%) shared their result with at least one family member. Participants described deriving personal utility from their results. CONCLUSION: This article is the first to describe research participants' reactions to actionable sequencing results. Our findings suggest clinical and personal benefit from receiving sequencing results, both of which may contribute to improved health for the recipients. Given the participants' largely positive or neutral affective responses and disclosure of their results to physicians and relatives, health-care providers should redirect concern from the potential for distress and attend to motivating patients to follow their medical recommendations.Genet Med 18 6, 577-583.