Supporting ColoREctal Equitable Navigation (SCREEN): a protocol for a stepped-wedge cluster randomized trial for patient navigation in primary care.

BACKGROUND: Black individuals in the United States (US) have a higher incidence of and mortality from colorectal cancer (CRC) compared to other racial groups, and CRC is the second leading cause of death among Hispanic/Latino populations in the US. Patient navigation is an evidence-based approach to narrow inequities in cancer screening among Black and Hispanic/Latino patients. Despite this, limited healthcare systems have implemented patient navigation for screening at scale. METHODS: We are conducting a stepped-wedge cluster randomized trial of 15 primary care clinics with six steps of six-month duration to scale a patient navigation program to improve screening rates among Black and Hispanic/Latino patients. After six months of baseline data collection with no intervention we will randomize clinics, whereby three clinics will join the intervention arm every six months until all clinics cross over to intervention. During the intervention roll out we will conduct training and education for clinics, change infrastructure in the electronic health record, create stakeholder relationships, assess readiness, and deliver iterative feedback. Framed by the Practical, Robust Implementation Sustainment Model (PRISM) we will focus on effectiveness, reach, provider adoption, and implementation. We will document adaptations to both the patient navigation intervention and to implementation strategies. To address health equity, we will engage multilevel stakeholder voices through interviews and a community advisory board to plan, deliver, adapt, measure, and disseminate study progress. Provider-level feedback will include updates on disparities in screening orders and completions. DISCUSSION: Primary care clinics are poised to close disparity gaps in CRC screening completion but may lack an understanding of the magnitude of these gaps and how to address them. We aim to understand how to tailor a patient navigation program for CRC screening to patients and providers across diverse clinics with wide variation in baseline screening rates, payor mix, proximity to specialty care, and patient volume. Findings from this study will inform other primary care practices and health systems on effective and sustainable strategies to deliver patient navigation for CRC screening among racial and ethnic minorities. TRIAL REGISTRATION: NCT06401174.

Young Adult Cancer Survivors' Perspectives on Cancer's Impact on Different Life Areas Post-Treatment: A Qualitative Study.

Purpose: Young adult cancer survivors experience disruptions in various life domains (e.g., relationships, academic/career) during and after treatment. This study examined life disruptions and related supports to update interventions to improve psychological outcomes. Methods: In April-July 2023, young adult survivors (n = 23) were recruited (via clinics, support groups, nonprofit organizations, etc.) to complete semi-structured interviews assessing cancer's impact across life domains, how they coped with related disruptions, and facilitators to improved psychosocial well-being. We used a dual deductive-inductive approach to develop a codebook and then coded transcripts in Dedoose. Results: This sample was on average 33.7 years old (standard deviation [SD] = 4.4), 78.3% female, 73.9% non-Hispanic White, 47.8% married/cohabitating, 2.4 (SD = 1.0) years post-diagnosis, 1.4 years (SD = 0.9) post-treatment, and largely diagnosed with breast cancer (52.1%) or leukemia/lymphoma (34.7%). The most salient themes related to disruptions included mental health, feelings of isolation during survivorship, and disruptions to career and relationships with family or partners. Participants reported challenges navigating these feelings and disruptions, and difficulty understanding and conveying their needs. Many experienced limited support for navigating cancer-related trauma and life disruptions as a survivor. Participants also reported some positive impacts, like reevaluating their values and goals or feeling resilient, and emphasized the need to identify supports, accept that life had changed because of cancer, and have their needs and continued struggles validated by others during survivorship. Conclusions: Young adults experience ongoing disruptions across multiple life domains, underscoring the need for integrated, longer-term psychosocial supports to help them navigate these disruptions and reevaluate their goals.

The association between a patient-centered quality of care index and self-efficacy among cancer survivors.

PURPOSE: The number of cancer survivors in the US surpassed 18.1 million in 2022 and this number continues to grow. Patient self-efficacy, a patient's confidence in his or her ability to self-manage symptoms and healthcare concerns, has been linked to improved health outcomes. We thus set out to examine the association between a patient-centered care quality index and self-efficacy among cancer survivors. METHODS: Data from 777 survivors of breast, prostate, and colorectal cancers at 32 cancer centers nationwide were collected 6 months after an initial survivorship visit. Patients completed surveys assessing patient-centered care (36 items under seven factors) and individual self-efficacy (eight items). Multiple linear regression was used to examine the association between patient-centered care and patient self-efficacy, adjusting for demographics, cancer-related characteristics, and organizational characteristics of high-quality patient-centered survivorship care. RESULTS: In descriptive analyses, there were no statistically significant differences in demographic or cancer-related characteristics between cancer survivors by quality of patient-centered care. In regression models, a one-unit increase in patient-centered care was associated with a 0.23 (95% CI 0.14-0.32) increase in mean self-efficacy compared to low quality of patient-centered care when adjusting for demographics, cancer-related characteristics, and indicators of high-quality survivorship care. Individually, four of the seven factors of quality patient-centered care were statistically significantly associated with greater self-efficacy. Having a medical home was associated with the greatest increase in self-efficacy among survivors. CONCLUSION: Our findings indicate that higher quality patient-centered care is associated with greater cancer survivor self-efficacy. Given that self-efficacy is correlated with improved health outcomes and quality of life, this finding further supports the importance of high-quality patient-centered survivorship care. IMPLICATIONS OF CANCER SURVIVORS: High-quality patient-centered survivorship care was associated with higher patient self-efficacy. This association should further be explored among cancer survivors with diverse characteristics.

Understanding social needs screening and demographic data collection in primary care practices serving Maryland Medicare patients.

BACKGROUND: Health outcomes are strongly impacted by social determinants of health, including social risk factors and patient demographics, due to structural inequities and discrimination. Primary care is viewed as a potential medical setting to assess and address individual health-related social needs and to collect detailed patient demographics to assess and advance health equity, but limited literature evaluates such processes. METHODS: We conducted an analysis of cross-sectional survey data collected from n = 507 Maryland Primary Care Program (MDPCP) practices through Care Transformation Requirements (CTR) reporting in 2022. Descriptive statistics were used to summarize practice responses on social needs screening and demographic data collection. A stepwise regression analysis was conducted to determine factors predicting screening of all vs. a targeted subset of beneficiaries for unmet social needs. RESULTS: Almost all practices (99%) reported conducting some form of social needs screening and demographic data collection. Practices reported variation in what screening tools or demographic questions were employed, frequency of screening, and how information was used. More than 75% of practices reported prioritizing transportation, food insecurity, housing instability, financial resource strain, and social isolation. CONCLUSIONS: Within the MDPCP program there was widespread implementation of social needs screenings and demographic data collection. However, there was room for additional supports in addressing some challenging social needs and increasing detailed demographics. Further research is needed to understand any adjustments to clinical care in response to identified social needs or application of data for uses such as assessing progress towards health equity and the subsequent impact on clinical care and health outcomes.

Contextual Factors Relevant to Implementing Social Risk Factor Screening and Referrals in Cancer Survivorship: A Qualitative Study.

Introduction: Social risk factors such as food insecurity and lack of transportation can negatively affect health outcomes, yet implementation of screening and referral for social risk factors is limited in medical settings, particularly in cancer survivorship. Methods: We conducted 18 qualitative, semistructured interviews among oncology teams in 3 health systems in Washington, DC, during February and March 2022. We applied the Exploration, Preparation, Implementation, Sustainment Framework to develop a deductive codebook, performed thematic analysis on the interview transcripts, and summarized our results descriptively. Results: Health systems varied in clinical and support staff roles and capacity. None of the participating clinics had an electronic health record (EHR)-based process for identifying patients who completed their cancer treatment ("survivors") or a standardized cancer survivorship program. Their capacities also differed for documenting social risk factors and referrals in the EHR. Interviewees expressed awareness of the prevalence and effect of social risk factors on cancer survivors, but none employed a systematic process for identifying and addressing social risk factors. Recommendations for increasing screening for social risk factors included designating a person to fulfill this role, improving data tracking tools in the EHR, and creating systems to maintain up-to-date information and contacts for community-based organizations. Conclusion: The complexity of cancer care workflows and lack of reimbursement results in a limited ability for clinic staff members to screen and make referrals for social risk factors. Creating clinical workflows that are flexible and tailored to staffing realities may contribute to successful implementation of a screening and referral program. Improving ongoing communication with community-based organizations to address needs was deemed important by interviewees.

A digital, coach-assisted intervention to address the psychosocial needs of young adult cancer survivors: Randomized controlled trial protocol and intervention adaptation process.

BACKGROUND: Given the increasing number of young adult cancer survivors and the impacts of cancer on various life domains, interventions addressing the psychosocial needs of young adult survivors are crucial. However, such intervention research is limited, and the existing literature has often: 1) overlooked young adult survivors' psychosocial needs; 2) targeted depression, anxiety, or fear of recurrence - rather than positive outcomes like well-being; and 3) failed to consider scalable approaches, like digital health. METHODS: This paper documents the development and refinement of an 8-week digital, coach-assisted intervention targeting hope among young adult cancer survivors (ages 18-39, within 3 years of treatment completion) and presents the protocol of the 2-arm RCT (comparing intervention vs. attention control). The intervention builds upon a 2017-2018 pilot trial (n = 56); intervention refinements were based on subsequent semi-structured interviews among young adult survivors (n = 23). RESULTS: The pending trial design involves an increased sample size (n = 150) to increase power and diversified recruitment efforts (i.e., clinic-based, social media, community-based organizations, etc.) to facilitate intervention reach, accessibility, and scalability. The intervention was enhanced by integrating highly relevant theoretical and therapeutic frameworks, specifically the concept of hope and Acceptance and Commitment Therapy, as well as updating intervention delivery technology. Intervention outcomes include feasibility and acceptability at end-of-treatment and preliminary efficacy on hope (primary outcome) and quality of life measures (secondary outcomes) at end-of-treatment and 16-week follow-up. CONCLUSIONS: This paper may facilitate discussion regarding approaches for addressing the significant psychosocial challenges faced by young adult survivors and catalyze dissemination of trial results. TRIAL REGISTRATION: NCT05905250.

A novel voice interactive sleep log: concurrent validity with actigraphy and sleep diaries.

This is a preliminary validation study of a novel approach to an interactive sleep data collection platform. We compared actigraphy, paper and pencil logs, and the novel voice interactive sleep log in a sample of 17 breast cancer survivors with insomnia symptoms and also report qualitative data on acceptability. We used correlation coefficients and Bland Altman plots to evaluate convergent validity across these measures and report means for acceptability ratings. The sleep log data collected via paper and pencil vs the voice interactive measure had comparable mean values and variable validity coefficients across key sleep variables compared to actigraphy except for wake after sleep onset, where the voice-interactive system had fair concurrent validity with actigraphy. The voice interactive sleep log has several advantages over pencil and paper logs and actigraphy as it reduces patient burden, automatically calculates sleep variables, documents the timeliness of response and provides daily feedback to respondents on calculated sleep metrics. CLINICAL TRIAL REGISTRATION: Registry: ClinicalTrials.gov; Identifier: NCT05233800. CITATION: Lewin D, Starling CM, Zhou ES, Greenberg D, Shaw C, Arem H. A novel voice interactive sleep log: concurrent validity with actigraphy and sleep diaries. J Clin Sleep Med. 2024;20(2):309-312.

Embedding lifestyle interventions into cancer care: has telehealth narrowed the equity gap?

Lifestyle interventions targeting energy balance (ie, diet, exercise) are critical for optimizing the health and well-being of cancer survivors. Despite their benefits, access to these interventions is limited, especially in underserved populations, including older people, minority populations and those living in rural and remote areas. Telehealth has the potential to improve equity and increase access. This article outlines the advantages and challenges of using telehealth to support the integration of lifestyle interventions into cancer care. We describe 2 recent studies, GO-EXCAP and weSurvive, as examples of telehealth lifestyle intervention in underserved populations (older people and rural cancer survivors) and offer practical recommendations for future implementation. Innovative approaches to the use of telehealth-delivered lifestyle intervention during cancer survivorship offer great potential to reduce cancer burden.

Linking social and built environmental factors to leisure-time physical activity in rural cancer survivors.

BACKGROUND: This study explored associations between social and built environmental factors and leisure-time physical activity (LTPA) in rural cancer survivors (RCS) and whether these associations differed by exercise stage of change (SOC). METHOD: RCS (n = 219) completed questionnaires assessing LTPA, SOC, and social (social status, connectedness, support) and environmental (home environment, neighborhood environment) factors. Linear regression models examined associations between social and built environmental factors and LTPA and tested for moderation by SOC. RESULTS: Half (50.7%) of RCS were physically active, and 49.3% were not active. Social factors positively associated with LTPA included subjective social status in the community (B = 89.0, P = .014) and in the United States (B = 181.3, P < .001), social connectedness (B = 122.3, P = .024), and social support for physical activity from family (B = 41.9, P < .001) and friends (B = 44.3, P < .001). Environmental factors positively associated with LTPA included the home environment (B = 111.2, P < .001), perceived environmental support for PA (B = 355.4, P = .004), and neighborhood attributes, including bicycling infrastructure (B = 191.3, P = .003), proximity to recreation facilities (B = 140.1, P = .021), traffic safety (B = 184.5, P = .025), and aesthetics (B = 342.6, P < .001). SOC statistically significantly moderated the association between social status in the United States and LTPA (B = 160.3, P = .031). CONCLUSIONS: Social and built environmental factors were consistently linked with LTPA and provide context for multilevel interventions promoting LTPA in RCS.

Considerations in implementation of social risk factor screening and referral in maternal and infant care in Washington, DC: A qualitative study.

BACKGROUND: The District of Columbia (DC) has striking disparities in maternal and infant outcomes comparing Black to White women and babies. Social determinants of health (SDoH) are widely recognized as a significant contributor to these disparities in health outcomes. Screening for social risk factors and referral for appropriate services is a critical step in addressing social needs and reducing outcome disparities. METHODS: We conducted interviews among employees (n = 18) and patients (n = 9) across three diverse, urban clinics within a healthcare system and one community-based organization involved in a five-year initiative to reduce maternal and infant disparities in DC. Interviews were guided by the Consolidated Framework for Implementation Research to understand current processes and organizational factors that contributed to or impeded delivery of social risk factor screening and referral for indicated needs. RESULTS: We found that current processes for social risk factor screening and referral differed between and within clinics depending on the patient population. Key facilitators of successful screening included a supportive organizational culture and adaptability of more patient-centered screening processes. Key barriers to delivery included high patient volume and limited electronic health record capabilities to record results and track the status of internal and community referrals. Areas identified for improvement included additional social risk factor assessment training for new providers, patient-centered approaches to screening, improved tracking processes, and facilitation of connections to social services within clinical settings. CONCLUSION: Despite proliferation of social risk factor screeners and recognition of their importance within health care settings, few studies detail implementation processes for social risk factor screening and referrals. Future studies should test implementation strategies for screening and referral services to address identified barriers to implementation.

Identifying research practices toward achieving health equity principles within the Cancer Prevention and Control Research Network.

PURPOSE: Although there is national recognition for health equity-oriented research, there is limited guidance for researchers to engage partnerships that promote health equity in cancer research. The Cancer Prevention and Control Research Network's (CPCRN) Health Equity Work Group developed a toolkit to guide researchers in equitable collaborations. METHODS: The CPCRN's Health Equity Work Group collectively outlined health and racial equity principles guiding research collaborations with partners that include communities, community-based organizations, implementing partners in the clinical setting including providers and health care organizations, and policy makers. Using a network-wide survey to crowdsource information around ongoing practices, we leveraged and integrated the network's experience and collaborations. RESULTS: Data from the survey formed the preliminary basis for the toolkit, with a focus on sharing fiscal resources with partners, training and capacity building, collaborative decision-making, community-driven research agenda setting, and sustainability. The final toolkit provides reflection considerations for researchers and collated exemplary resources, supported by the contemporary research. CONCLUSIONS: The toolkit provides a guide to researchers at all experience levels wanting to engage in equitable research collaborations. Future efforts are underway to evaluate whether and how researchers within and outside CPCRN are able to incorporate these principles in research collaborations.

Oncology provider experiences during the COVID-19 pandemic.

PURPOSE: The COVID-19 pandemic upended nearly all aspects of daily life and of medical care, placing a double burden of professional and personal concerns on those who provide medical care. We set out to assess the burden of the pandemic on provider outlook and understand how cancer survivorship providers experienced rapid changes to practice. METHODS: We distributed a survey through the American College of Surgeons Commission on Cancer (CoC) to its accredited organizations in mid-October 2020. We included questions on provider characteristics, changes in patient care practices resulting from the pandemic, worry about COVID-19, and concern about impact on cancer survivors. RESULTS: Of the n = 607 participants, three-quarters were female and three-quarters were White. Only 2.1% of participants reported having had COVID-19, but 43% reported anxiety about getting COVID-19 and over a quarter experienced sadness or depression, anxiety about the future, changes to sleep, difficulty concentrating, or social isolation. Approximately half of providers also expressed significant concern about progression of cancer in patients who experienced care delays or were afraid of accessing in-person care. In terms of changes to survivorship care, respondents reported changes to visitor policies, delays or cancellations, and efforts to reduce in-person visits. CONCLUSIONS: COVID-19 has taken a significant toll on front-line healthcare professionals, including oncologists and cancer care allied health professionals. Findings support proactive mental health support of healthcare professionals as well as emergency preparedness to manage delays to care for cancer patients in the event of future unexpected pandemics.

Testing delivery of components of cognitive behavioral therapy for insomnia to breast cancer survivors by smart speaker: a study protocol.

BACKGROUND: Insomnia is common in breast cancer survivors (BCS), affecting an estimated 30-50% of the 3.8 million BCS in the US. Insomnia is associated with health consequences for cardiometabolic and immune systems, neurobehavioral function, depression, fatigue, and quality of life and may put BCS at particular risk. While pharmacotherapy for insomnia may address symptoms in the short-term, cognitive behavioral therapy for insomnia (CBT-I) is considered the gold standard insomnia treatment. We describe our protocol to determine the efficacy of voice-activated delivery of CBT-I components on insomnia symptoms compared to a sleep education control among BCS. METHODS: We will conduct a 6-week, randomized controlled trial with two arms. Intervention arm participants will receive a smart speaker device and will be asked to engage with the program daily, using a voice-activated speaker with an accompanying smart-phone app. Control participants will have access to a website with basic information about CBT-I, sleep, and breast cancer survivorship and will be asked to engage with the website as desired. DISCUSSION: Our primary outcome is the Insomnia Severity Index total score. Secondary outcomes include sleep diary outcomes (sleep efficiency, wake after sleep onset, sleep onset latency, total sleep time, and sleep quality). This study will provide evidence on a promising modality to deliver elements of CBT-I for BCS experiencing insomnia. Trial Registration ClinicalTrials.gov NCT05233800 Released 3/25/2022.

Healthcare utilization in cancer survivors: six-month longitudinal cohort data.

PURPOSE: To describe healthcare utilization and reasons for delaying medical care and to identify factors that influence high healthcare utilization and care delay among cancer survivors. METHODS: Baseline (n = 991) and 6 month follow-up data (n = 777) were collected among breast, prostate, and colorectal cancer survivors from 32 US cancer centers. Participants completed surveys on healthcare utilization (e.g., number of visits to specific providers) and delay of medical care. We categorized participants as high or low users based on median number of visits. We used logistic regression models to examine factors that predicted high healthcare utilization or delay. RESULTS: Survivors reported a median of 10.5 visits to healthcare providers and 28% reported ever delaying medical care over 6 months. Compared to prostate cancer survivors, breast and colorectal survivors were 2.4 times more likely (CI = 1.2-4.8) and 4 times more likely (CI = 2.2-7.3) to be high healthcare users, respectively. A higher quality of life score predicted high healthcare utilization (OR = 2.4, CI = 2.0-2.8) and delay of medical care (OR = 1.8, CI = 1.5-2.2). Black survivors were 1.5 times more likely than White survivors to be high healthcare users (CI = 1.1-2.0) and respondents reporting a race category other than White or Black were 1.8 times more likely to delay care (CI = 1.3-2.5). Lower levels of self-efficacy predicted greater healthcare use (OR = 0.7, CI = 0.6-0.8) and delay (OR = 0.6, CI = 0.5-0.7). CONCLUSION: Our findings suggest that race, education, marital status, cancer type, time since diagnosis, quality of life, and self-efficacy are associated with both high healthcare utilization and delay among cancer survivors.

Cross-Sectional Retrospective Assessments versus Longitudinal Prospective Assessments of Substance Use Change among Young Adults during COVID-19: Magnitude and Correlates of Discordant Findings.

Significance: Findings regarding changes in substance use since COVID-19 have been mixed, potentially due to differences in methods used to assess change. Thus, we compared changes in substance use per retrospective self-report at one time-point (March-May 2020) versus prospective, longitudinal self-report across 2 time-points (Sept-Dec 2019; March-May 2020), and identified predictors of discordance. Methods: We analyzed data from a longitudinal study of 1,082 young adults from 6 metropolitan areas. Across cigarettes, e-cigarettes, marijuana, and alcohol, participants were categorized as Increasers (increased based on both methods), Decreasers/Stable (decreased/same per both methods), Over-reporters (decreased/same per longitudinal data/increased via retrospective report), or Under-reporters (increased per longitudinal data/decreased/same via retrospective report). We identified predictors (e.g., sociodemographics, pre-pandemic substance use levels) of Under-reporting. Results: In this sample (Mage=24.77; 45.7% male, 32.1% sexual minority, 4.0% Black, 12.4% Asian, 12.6% Hispanic), longitudinal data indicated that the proportions of cigarette, e-cigarette, marijuana, and alcohol users who increased their use were 43.3%, 41.7%, 52.6%, and 55.6%, respectively. Examining concordance/discordance groups, Under-reporters accounted for between 17.7% (alcohol) and 26.8% (e-cigarette) of users; over-reporters comprised among the smallest proportions of each group (17.4% for alcohol to 22.2% for marijuana). Multivariable regression indicated that predictors of Under-reporting were less pre-pandemic use across substances; being older for e-cigarettes; and being older, male, and Asian for alcohol. Conclusions: Findings highlight methodological variability as a potential reason for mixed findings regarding pandemic-related substance use change and underscore the need for rigorously designed research to accurately assess the population impact of COVID-19 and other historical events.

Cancer Provider and Survivor Experiences With Telehealth During the COVID-19 Pandemic.

PURPOSE: The COVID-19 pandemic led to rapid shifts in cancer survivorship care, including the widespread use of telehealth. Given the swift transition and limited data on preferences and experiences around telehealth, we surveyed oncology providers and post-treatment survivors to better understand experiences with the transition to telehealth. METHODS: We distributed provider (MD, PA or NP, nurse, navigator, and social worker) and survivor surveys through the American College of Surgeons Commission on Cancer in mid-October 2020. Survivor surveys were also disseminated through patient advocacy organizations. We included questions on demographics, experiences with telehealth, and preferences for future telehealth utilization. RESULTS: Among N = 607 providers and N = 539 cancer survivors, there was overwhelmingly more support from providers than from survivors for delivery of various types of survivorship care via telehealth and greater comfort with telehealth technologies. The only types of appointments deemed appropriate for survivorship care by both > 50% of providers and survivors were discussion of laboratory results or imaging, assessment and/or management of cancer treatment symptoms, nutrition counseling, and patient navigation support. Only a quarter of survivors reported increased access to health care services (25.5%), and 32.0% reported that they would use telehealth again. CONCLUSION: Although there have been drastic changes in technological capabilities and billing reimbursement structures for telehealth, there are still concerns around delivery of a broad range of survivorship care services via telehealth, particularly from the patient perspective. Still, offering telehealth services, where endorsed by providers and if available and acceptable to cancer survivors, may provide more efficient and accessible care following the COVID-19 pandemic.

Defining a patient-centered approach to cancer survivorship care: development of the patient centered survivorship care index (PC-SCI).

PURPOSE: This study presents the validation of an index that defines and measures a patient-centered approach to quality survivorship care. METHODS: We conducted a national survey of 1,278 survivors of breast, prostate, and colorectal cancers to identify their priorities for cancer survivorship care. We identified 42 items that were "very important or absolutely essential" to study participants. We then conducted exploratory and confirmatory factor analyses (EFA/CFA) to develop and validate the Patient-Centered Survivorship Care Index (PC-SCI). RESULTS: A seven-factor structure was identified based on EFA on a randomly split half sample and then validated by CFA based on the other half sample. The seven factors include: (1) information and support in survivorship (7 items), (2) having a medical home (10 items) (3) patient engagement in care (3 items), (4) care coordination (5 items), (5) insurance navigation (3 items), (6) care transitions from oncologist to primary care (3 items), and (7) prevention and wellness services (5 items). All factors have excellent composite reliabilities (Cronbach's alpha 0.84-0.94, Coefficient of Omega: 0.81-0.94). CONCLUSIONS: Providing quality post-treatment care is critical for the long-term health and well-being of survivors. The PC-SCI defines a patient-centered approach to survivorship care to complement clinical practice guidelines. The PC-SCI has acceptable composite reliability, providing the field with a valid instrument of patient-centered survivorship care. The PC-SCI provides cancer centers with a means to guide, measure and monitor the development of their survivorship care to align with patient priorities of care. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT02362750 , 13 February 2015.

Strategies for the Identification and Prevention of Survey Fraud: Data Analysis of a Web-Based Survey.

BACKGROUND: To assess the impact of COVID-19 on cancer survivors, we fielded a survey promoted via email and social media in winter 2020. Examination of the data showed suspicious patterns that warranted serious review. OBJECTIVE: The aim of this paper is to review the methods used to identify and prevent fraudulent survey responses. METHODS: As precautions, we included a Completely Automated Public Turing test to tell Computers and Humans Apart (CAPTCHA), a hidden question, and instructions for respondents to type a specific word. To identify likely fraudulent data, we defined a priori indicators that warranted elimination or suspicion. If a survey contained two or more suspicious indicators, the survey was eliminated. We examined differences between the retained and eliminated data sets. RESULTS: Of the total responses (N=1977), nearly three-fourths (n=1408) were dropped and one-fourth (n=569) were retained after data quality checking. Comparisons of the two data sets showed statistically significant differences across almost all demographic characteristics. CONCLUSIONS: Numerous precautions beyond the inclusion of a CAPTCHA are needed when fielding web-based surveys, particularly if a financial incentive is offered.

Trajectories of fatigue in a population-based sample of older adult breast, prostate, and colorectal cancer survivors: an analysis using the SEER-MHOS data resource.

PURPOSE: Fatigue is one of the most common and distressing symptoms experienced by cancer survivors. Understanding fatigue trajectories from pre- to post-diagnosis could inform fatigue prevention and management strategies. METHODS: We used the Surveillance, Epidemiology and End Results Medicare Health Outcomes Survey (SEER-MHOS) linked data resource to characterize fatigue trajectories and their predictors 1214 older adult survivors of breast, colorectal, or prostate cancer. Fatigue was measured prior to the cancer diagnosis (T0) and at two timepoints after diagnosis (T1: mean = 20 months and T2: mean = 39 months post-diagnosis). Latent growth curve modeling and mixed effects models for repeated measurements were used to investigate fatigue experiences before and after a cancer diagnosis. RESULTS: Overall, mean fatigue T-scores declined (T0 = 50, T1 = 46, and T2 = 45) indicating worsening fatigue over time. Four latent trajectory subgroups were identified: severe fatigue worsening over time (8.2% of sample), severe fatigue persisting over time (14.4%), no fatigue pre-diagnosis and mild fatigue post-diagnosis (44.4%), and not fatigued (33%). Age, cancer stage, comorbidities, and depressed mood predicted membership in the two trajectory groups experiencing severe fatigue that persisted or that worsened post-diagnosis. Older age, advanced cancer stage at diagnosis, and depressed mood were significantly associated with worsening fatigue from T1 to T2 (all p < 0.0001). CONCLUSIONS: Evaluating cancer patients for depressive symptoms and considering prior fatigue levels, age, comorbid conditions, and cancer stage may help providers anticipate fatigue trajectories and implement pre-emptive strategies to lessen fatigue impact.

Provider Discussion about Lifestyle by Cancer History: A Nationally Representative Survey.

BACKGROUND: Providers are uniquely positioned to encourage health-promoting behaviors, particularly among cancer survivors where patients develop trust in providers. METHODS: We utilized the National Health Interview Survey to identify adults who reported a visit to a provider in the prior year (44,385 individuals with no cancer history and 4,792 cancer survivors), and reported prevalence of provider discussions on weight loss, physical activity, diet, and smoking. We used generalized linear mixed models to examine predicted prevalence of provider lifestyle discussions by cancer history overall, and among those who do not meet body mass index (BMI), activity, or smoking guidelines. RESULTS: Among those with a BMI of 25-<60 kg/m2, 9.2% of those with a cancer history and 11.6% of those without a cancer history reported being told to participate in a weight loss program (P < 0.001). Overall, 31.7% of cancer survivors and 35.3% of those with no cancer history were told to increase their physical activity (P < 0.001). Only 27.6% of cancer survivors and 32.2% of those with no cancer history reported having a general discussion of diet (P < 0.001). Among smokers, 67.3% of cancer survivors and 69.9% of those with no cancer history reported counseling on smoking (P = 0.309). CONCLUSIONS: Fewer cancer survivors, who are at increased risk for health complications, are reporting provider discussions about critical lifestyle issues than those with no cancer history. IMPACT: Our nationally representative results suggest that providers are missing an opportunity for influencing patient lifestyle factors, which could lead to mitigation of late and long-term effects of treatment.