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The HealthStreet Cancer Survivor Cohort: a Community Registry for Cancer Research

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Abstract

Purpose

This report describes a cancer survivor cohort from a community engagement program and compares characteristics and willingness to participate in health research between the cancer survivors and non-cancer community members.

Methods

Among 11,857 members enrolled in HealthStreet at the University of Florida (10/2011–03/2020), 991 cancer survivors were identified and 1:1 matched to control members without cancer on sex, age, and zip code. Demographics, body weight, height, social determinants of health, history of cancer, and willingness to participate in research were recorded by Community Health Workers as a part of the baseline Health Needs Assessment.

Results

Among the cancer survivors, 71.6% were female and 19.2% lived in rural areas with a mean age of 56.7 years in females and 60.8 years in males. At baseline, 44.7% received a cancer diagnosis within 5 years, while 15.8%, more than 20 years. Cancer survivors (vs. matched non-cancer controls) were less likely to be Black (31.1% vs. 63.6%) but more likely to be divorced, separated, or widowed (49.5% vs. 41.2%), be normal/underweight (34.0% vs. 25.6%) and have health insurance (80.0% vs. 68.6%; all p < 0.05). Cancer survivors versus matched controls reported higher rates of ever being in a health research study (32.4% vs. 24.9%) and interest in participating in studies ranging from minimal risk to greater-than-minimal risk.

Conclusions

Cancer survivors from this community engagement program agnostic to cancer types and treatment are diverse in geography, race, and social determinants of health and can be a valuable resource for observational, interventional, and biospecimen research in cancer survivorship.

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Data availability

The data supporting the findings of this study are not publicly available in order to protect patient privacy. The data will be made available to authorized researchers who have submitted an IRB application.

References

  1. Rowland JH, Gallicchio L, Mollica M, et al. Survivorship science at the NIH: lessons learned from grants funded in fiscal year 2016. J Natl Cancer Inst. 2019;111(2):109–17.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Harrop JP, Dean JA, Paskett ED. Cancer survivorship research: a review of the literature and summary of current NCI-designated cancer center projects. Cancer Epidemiol Biomarkers Prev. 2011;20(10):2042–7.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Shapiro CL. Cancer Survivorship. N Engl J Med. 2018;379(25):2438–50.

    Article  PubMed  Google Scholar 

  4. Miller KD, Nogueira L, Mariotto AB, et al. Cancer treatment and survivorship statistics, 2019. CA Cancer J Clin. 2019;69(5):363–85.

    Article  PubMed  Google Scholar 

  5. Paskett ED, Caan BJ, Johnson L, et al. The Women’s Health Initiative (WHI) Life and Longevity After Cancer (LILAC) Study: description and baseline characteristics of participants. Cancer Epidemiol Biomarkers Prev. 2018;27(2):125–37.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Courneya KS, McNeely ML, Culos-Reed SN, et al. The Alberta Moving Beyond Breast Cancer (AMBER) Cohort Study: recruitment, baseline assessment, and description of the first 500 participants. BMC Cancer. 2016;16:481.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Krok-Schoen JL, Bernardo BM, Elena JW, et al. An environmental scan of biopsychosocial and clinical variables in cohort studies of cancer survivors. Cancer Epidemiol Biomarkers Prev. 2019;28(10):1621–41.

    Article  PubMed  PubMed Central  Google Scholar 

  8. World Health Organization. World conference on social determinants of health: case studies on social determinants. 2014.

  9. Dean LT, Gehlert S, Neuhouser ML, et al. Social factors matter in cancer risk and survivorship. Cancer Causes Control. 2018;29(7):611–8.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Loree JM, Anand S, Dasari A, et al. Disparity of race reporting and representation in clinical trials leading to cancer drug approvals from 2008 to 2018. JAMA Oncol. 2019;5(10):e191870.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA. 2004;291(22):2720–6.

    Article  CAS  PubMed  Google Scholar 

  12. Fisher JA, Kalbaugh CA. Challenging assumptions about minority participation in US clinical research. Am J Public Health. 2011;101(12):2217–22.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Wendler D, Kington R, Madans J, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2006;3(2):e19.

    Article  PubMed  Google Scholar 

  14. Varma DS, Strelnick AH, Bennett N, et al. Improving community participation in clinical and translational research: CTSA Sentinel Network proof of concept study. J Clin Transl Sci. 2020;4(4):323–30.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Barrett NJ, Rodriguez EM, Iachan R, et al. Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers. Cancer. 2020;126(5):1077–89.

    Article  PubMed  Google Scholar 

  16. Thetford K, Gillespie TW, Kim YI, et al. Willingness of Latinx and African Americans to participate in nontherapeutic trials: it depends on who runs the research. Ethn Dis. 2021;31(2):263–72.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Webb FJ, Khubchandani J, Striley CW, et al. Black-White differences in willingness to participate and perceptions about health research: results from the population-based HealthStreet Study. J Immigr Minor Health. 2019;21(2):299–305.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Cottler LB, O’Leary CC, Striley CW. HealthStreet: a community based approach to include mental health in public health research. In: Cottler LB, editor. Mental health in public health: the next 100 years. New York, NY: Oxford University Press; 2011. p. 247–73.

    Google Scholar 

  19. Cottler LB, Nagarajan R. Real-time assessment of community health needs and concerns. Sci Transl Med. 2012;4(119):119mr2.

    Article  PubMed  Google Scholar 

  20. Cottler LB, McCloskey DJ, Aguilar-Gaxiola S, et al. Community needs, concerns, and perceptions about health research: findings from the clinical and translational science award sentinel network. Am J Public Health. 2013;103(9):1685–92.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Ross JGC, Escamilla V, Lee NK, et al. Geospatial patterns of access to self-care resources for obesity among endometrial cancer survivors in a high poverty urban community. Gynecol Oncol. 2019;152(2):322–7.

    Article  PubMed  Google Scholar 

  22. Armenian SH, Xu L, Ky B, et al. Cardiovascular disease among survivors of adult-onset cancer: a Community-Based Retrospective Cohort Study. J Clin Oncol. 2016;34(10):1122–30.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  23. Beltran VM, Harrison KM, Hall HI, et al. Collection of social determinant of health measures in U.S. national surveillance systems for HIV, viral hepatitis, STDs, and TB. Public Health Rep. 2011;126(Suppl 3):41–53.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Expert Panel on the Identification, E and Treatment of Overweight in Adults, Clinical guidelines on the identification, evaluation, and treatment of overweight and obesity in adults: executive summary. Am J Clin Nutr. 1998;68(4):899–917.

  25. DHHS Health Resources & Services Administration. List of Rural Counties And Designated Eligible Census Tracts in Metropolitan Counties. 2018 [cited 2021 December 30]; Available from: https://www.hrsa.gov/sites/default/files/hrsa/ruralhealth/resources/forhpeligibleareas.pdf.

  26. Florida Department of Health. Rural Health. 2016 [cited 2022 January 3]; Available from: https://www.floridahealth.gov/provider-and-partner-resources/community-health-workers/health-professional-shortage-designations/Rural%20Counties%20Map%202016.pdf.

  27. Otufowora A, Liu Y, Young H, 2nd, et al. Sex differences in willingness to participate in research based on study risk level among a community sample of African Americans in North Central Florida. J Immigr Minor Health. 2020.

  28. Slomka J, Ratliff EA, McCurdy S, et al. Perceptions of risk in research participation among underserved minority drug users. Subst Use Misuse. 2008;43(11):1640–52.

    Article  PubMed  PubMed Central  Google Scholar 

  29. The Office of Economic and Demographic Research (EDR). County Profiles. [cited 2020 December, 31]; Available from: http://edr.state.fl.us/content/area-profiles/county/index.cfm.

  30. Florida Department of Health. Individuals below 200% of poverty level. 2019 [cited 2022 January 3]; Available from: https://www.flhealthcharts.gov/ChartsReports/rdPage.aspx?rdReport=NonVitalIndRateOnly.DataViewer&cid=461.

  31. Weaver KE, Geiger AM, Lu L, et al. Rural-urban disparities in health status among US cancer survivors. Cancer. 2013;119(5):1050–7.

    Article  PubMed  Google Scholar 

  32. Zahnd WE, Davis MM, Rotter JS, et al. Rural-urban differences in financial burden among cancer survivors: an analysis of a nationally representative survey. Support Care Cancer. 2019;27(12):4779–86.

    Article  PubMed  PubMed Central  Google Scholar 

  33. McDougall JA, Banegas MP, Wiggins CL, et al. Rural disparities in treatment-related financial hardship and adherence to surveillance colonoscopy in diverse colorectal cancer survivors. Cancer Epidemiol Biomarkers Prev. 2018;27(11):1275–82.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Shoemaker ML, White MC, Hawkins NA, et al. Prevalence of smoking and obesity among U.S. cancer survivors: estimates from the National Health Interview Survey, 2008–2012. Oncol Nurs Forum. 2016;43(4):436–41.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Thorpe KE, Howard D, Health insurance and spending among cancer patients. Health Aff (Millwood). 2003;Suppl Web Exclusives:W3–189–98.

  36. Liu Y, Elliott AL, Serdarevic M, et al. A latent class analysis of the past-30-day substance use patterns among lifetime cocaine users findings from a community sample in North Central Florida. Addict Behav Rep. 2019;9:100170.

    PubMed  PubMed Central  Google Scholar 

  37. Serdarevic M, Gurka KK, Striley CW, et al. Prevalence of concurrent prescription opioid and hazardous alcohol use among older women: results from a cross-sectional study of community members. J Community Health. 2019;44(1):172–7.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Serdarevic M, Striley CW, Gurka KK, et al. Sex differences in prescription opioid use patterns assessed through a community engagement program in Florida. Drug Alcohol Depend. 2019;204:107568.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  39. Striley CW, Milani SA, Kwiatkowski E, et al. Community perceptions related to brain donation: evidence for intervention. Alzheimers Dement. 2019;15(2):267–72.

    Article  PubMed  Google Scholar 

  40. Milani SA, Crooke H, Cottler LB, et al. Sex differences in frequent ED use among those with multimorbid chronic diseases. Am J Emerg Med. 2016;34(11):2127–31.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Varma DS, Hart M, McIntyre DS, et al. A research protocol to test the effectiveness of text messaging and reminder calls to increase service use referrals in a community engagement program. JMIR Res Protoc. 2016;5(2):e133.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Ruktanonchai CW, Pindolia DK, Striley CW, et al. Utilizing spatial statistics to identify cancer hot spots: a surveillance strategy to inform community-engaged outreach efforts. Int J Health Geogr. 2014;13:39.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Birken SA, Clary AS, Bernstein S, et al. Strategies for successful survivorship care plan implementation: results from a qualitative study. J Oncol Pract. 2018;14(8):e462–83.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Runowicz CD, Leach CR, Henry NL, et al. American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. CA Cancer J Clin. 2016;66(1):43–73.

    Article  PubMed  Google Scholar 

  45. Campbell KL, Winters-Stone KM, Wiskemann J, et al. Exercise guidelines for cancer survivors: consensus statement from international multidisciplinary roundtable. Med Sci Sports Exerc. 2019;51(11):2375–90.

    Article  PubMed  PubMed Central  Google Scholar 

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Funding

Funding was provided by the National Institutes of Health and National Clinical and Translational Science Award with Grant No. UL1 TR001427 (P.I.: Mitchell, D). Ting-Yuan David Cheng is supported by National Cancer Institute with Grant No. K07 CA201334.

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Authors and Affiliations

  1. Department of Epidemiology, College of Public Health and Health Professions & College of Medicine, University of Florida, 2004 Mowry Road, 4th Floor, P.O. Box 100231, Gainesville, FL, 32610, USA

    Ting-Yuan David Cheng, Piyush V. Chaudhari, Kevin R. Bitsie, Catherine W. Striley, Deepthi S. Varma & Linda B. Cottler

Authors
  1. Ting-Yuan David Cheng
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  2. Piyush V. Chaudhari
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  3. Kevin R. Bitsie
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  4. Catherine W. Striley
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  5. Deepthi S. Varma
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  6. Linda B. Cottler
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Contributions

Study conception and design: T.Y.C., L.B.C.; data acquisition: P.V.C, C.W.S., D.S.V., L.B.C.; writing—initial draft: T.Y.C., K.R.B.; data analysis: P.V.C.; data interpretation: T.Y.C., L.B.C.; writing—final review and approval: all authors.

Corresponding author

Correspondence to Ting-Yuan David Cheng.

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Conflict of interest

The authors declare no competing interests.

Ethics approval

HealthStreet protocol was approved by the University of Florida Institutional Review Board.

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All participants provide their written consent.

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Cheng, TY.D., Chaudhari, P.V., Bitsie, K.R. et al. The HealthStreet Cancer Survivor Cohort: a Community Registry for Cancer Research. J Cancer Surviv 18, 366–374 (2024). https://doi.org/10.1007/s11764-022-01173-4

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  • DOI: https://doi.org/10.1007/s11764-022-01173-4

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