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Cancer survivors are particularly vulnerable to adverse COVID-19-related outcomes, but limited data exist on perceptions about the pandemic and related experiences in this group.In a cross-sectional analysis of 494 survivors of genitourinary, breast, gynecologic, colorectal, lung, melanoma, or thyroid cancer, from a larger study of cancer survivors in New Jersey, we assessed perceptions about COVID-19 threat, impacts, and experiences using three validated instruments. Responses were coded on a 7-point Likert scale, and subscales were averaged across included items, with higher scores indicating greater perceptions of COVID-19 threat and greater impacts and experiences because of the pandemic. Multivariable linear regression models were used to determine factors associated with higher scores, with Bonferroni correction for multiple comparisons.In general, cancer survivors reported moderate perceived COVID-19 threat (3 items, mean score = 3.71 ± 1.97), minimal COVID-19-related impacts (6 items, mean score = 2.23 ± 1.34), and COVID-19-related experiences (7 items, mean score = 2.17 ± 1.00). COVID-19 impact subscale scores varied little (mean subscale score range = 2.09 to 2.29), while COVID-19 experiences subscale scores were quite variable (mean subscale score range = 1.52 to 3.39). Asian American/Pacific Islander race, Black race, female sex, and having more cardiovascular and metabolic and other comorbidities were associated with higher scores on the perceived coronavirus threat questionnaire. Having completed the COVID-19 questionnaires earlier in the pandemic, younger age, American/Pacific Islander race, Hispanic ethnicity, and having more comorbidities were associated with higher scores on the COVID-19 impact questionnaire. Younger age, racial minority status, and having more cardiovascular and metabolic comorbidities were associated with higher scores on the COVID-19 experience questionnaire.Among cancer survivors in New Jersey-a state that experienced high rates of COVID-19 infection-sociodemographic and health-related factors (e.g., race and ethnicity, sex, and multimorbidity) correlate with greater perceptions of COVID-19 threat, impacts, and experiences.Studies are needed to examine the influence of vaccination status on COVID-19 perceptions and identify inequities in clinical outcomes due to pandemic-related disruptions to cancer 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.

PURPOSE: Understanding information seeking behaviors and experiences are 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. METHODS: Nationally representative data collected in 2017–2018 from two cycles of the Health Information National Trends Survey (HINTS 5, Cycle 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. RESULTS: 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). Factor significantly associated with difficulty understanding information was annual household income (p=0.026). CONCLUSIONS: 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.

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. 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. 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. Registered August 1, 2017 at ClinicalTrials.gov , trial # NCT03233555.

This study describes the experiences of early implementers of primary care-focused cancer survivorship delivery models. Snowball sampling was used to identify innovators. Twelve participants (five cancer survivorship primary care innovators and seven content experts) attended a working conference focused on cancer survivorship population strategies and primary care transformation. Data included meeting discussion transcripts/field notes, transcribed in-depth innovator interviews, and innovators’ summaries of care models. We used a multistep immersion/crystallization analytic approach, guided by a primary care organizational change model. Innovative practice models included: (1) a consultative model in a primary care setting; (2) a primary care physician (PCP)-led, blended consultative/panel-based model in an oncology setting; (3) an oncology nurse navigator in a primary care practice; and (4) two subspecialty models where PCPs in a general medical practice dedicated part of their patient panel to cancer survivors. Implementation challenges included (1) lack of key stakeholder buy-in; (2) practice resources allocated to competing (non-survivorship) change efforts; and (3) competition with higher priority initiatives incentivized by payers. Cancer survivorship delivery models are potentially feasible in primary care; however, significant barriers to widespread implementation exist. Implementation efforts would benefit from increasing the awareness and potential value-add of primary care-focused strategies to address survivors’ needs. Current models of primary care-based cancer survivorship care may not be sustainable. Innovative strategies to provide quality care to this growing population of survivors need to be developed and integrated into primary care settings.