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Prevalence and correlates of health information-seeking among Hispanic and non-Hispanic childhood cancer survivors

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Abstract

Purpose

Childhood cancer survivors (CCS) report high unmet information needs. This study examined the prevalence of cancer-related information-seeking among CCS and investigated associations between information-seeking behavior and positive health outcomes such as follow-up care.

Methods

Participants (n = 193) were young adult CCS diagnosed with cancer in Los Angeles County, 54% of Hispanic ethnicity, with a mean age of 19.87, in remission, and at least 2 years from completion of treatment. CCS were asked where they accessed health information related to their cancer with response options categorized into four information domains: hospital resources, social media, other survivors, and family members. Multivariable logistic regression was used to assess variables associated with each information domain, including sociodemographics, post-traumatic growth (i.e., reporting positive changes since cancer diagnosis), health care engagement, level of education, and health insurance status.

Results

Hospital resources were the most commonly accessed information domain (65.3%), and CCS of Hispanic ethnicity (vs. non-Hispanic) were more likely to access this source. Seeking information from other cancer survivors was positively associated with follow-up care and post-traumatic growth. Hispanic CCS were marginally less likely to seek information from other survivors and family than non-Hispanics.

Conclusions

While CCS obtain information from a variety of sources, hospital resources are an important site for access, particularly for individuals of Hispanic ethnicity. Information sharing between survivors may promote positive health care engagement; however, Hispanic CCS may be less likely to utilize this resource and may face barriers in information sharing with other cancer survivors.

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References

  1. Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H et al (2004) Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med 2(1):61–70

    Article  PubMed  PubMed Central  Google Scholar 

  2. Rowland JH, Bellizzi KM (2008) Cancer survivors and survivorship research: a reflection on today’s successes and tomorrow's challenges. Hematol Oncol Clin North Am 22(2):181–200, v. https://doi.org/10.1016/j.hoc.2008.01.008

    Article  PubMed  Google Scholar 

  3. Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC et al (2008) Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol 26(27):4401–4409. https://doi.org/10.1200/JCO.2008.16.9607

    Article  PubMed  PubMed Central  Google Scholar 

  4. Keegan TH, Lichtensztajn DY, Kato I, Kent EE, XC W, West MM et al (2012) Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv 6(3):239–250. https://doi.org/10.1007/s11764-012-0219-9

    Article  PubMed  PubMed Central  Google Scholar 

  5. Cox CL, Zhu L, Ojha RP, Li C, Srivastava DK, Riley BB et al (2016) The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies. J Cancer Surviv 10(4):743–758. https://doi.org/10.1007/s11764-016-0520-0

    Article  PubMed  PubMed Central  Google Scholar 

  6. Gianinazzi ME, Essig S, Rueegg CS, von der Weid NX, Brazzola P, Kuehni CE et al (2014) Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer 61(2):312–318. https://doi.org/10.1002/pbc.24762

    Article  PubMed  Google Scholar 

  7. Knijnenburg SL, Kremer LC, van den Bos C, Braam KI, Jaspers MW (2010) Health information needs of childhood cancer survivors and their family. Pediatr Blood Cancer 54(1):123–127. https://doi.org/10.1002/pbc.22207

    Article  PubMed  Google Scholar 

  8. DeRouen MC, Smith AW, Tao L, Bellizzi KM, Lynch CF, Parsons HM et al (2015) Cancer-related information needs and cancer’s impact on control over life influence health-related quality of life among adolescents and young adults with cancer. Psychooncology 24(9):1104–1115. https://doi.org/10.1002/pon.3730

    Article  PubMed  PubMed Central  Google Scholar 

  9. Smith AW, Parsons HM, Kent EE, Bellizzi K, Zebrack BJ, Keel G et al (2013) Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE study. Front Oncol 3:75. https://doi.org/10.3389/fonc.2013.00075

    Article  PubMed  PubMed Central  Google Scholar 

  10. Viswanath K (2005) Science and society: the communications revolution and cancer control. Nat Rev Cancer 5(10):828–835. https://doi.org/10.1038/nrc1718.

    Article  CAS  PubMed  Google Scholar 

  11. Blanch-Hartigan D, Chawla N, Moser RP, Finney Rutten LJ, Hesse BW, Arora NK (2016) Trends in cancer survivors’ experience of patient-centered communication: results from the Health Information National Trends Survey (HINTS). J Cancer Surviv. https://doi.org/10.1007/s11764-016-0550-7

  12. Nagler RH, Romantan A, Kelly BJ, Stevens RS, Gray SW, Hull SJ et al (2010) How do cancer patients navigate the public information environment? Understanding patterns and motivations for movement among information sources. J Cancer Educ 25(3):360–370. https://doi.org/10.1007/s13187-010-0054-5

    Article  PubMed  PubMed Central  Google Scholar 

  13. Lewis N, Martinez LS, Freres DR, Schwartz JS, Armstrong K, Gray SW et al (2012) Seeking cancer-related information from media and family/friends increases fruit and vegetable consumption among cancer patients. Health Commun 27(4):380–388. https://doi.org/10.1080/10410236.2011.586990

    Article  PubMed  Google Scholar 

  14. Jung M (2014) Determinants of health information-seeking behavior: implications for post-treatment cancer patients. Asian Pac J Cancer Prev 15(16):6499–6504

    Article  PubMed  Google Scholar 

  15. Shneyderman Y, Rutten LJ, Arheart KL, Byrne MM, Kornfeld J, Schwartz SJ (2016) Health information seeking and cancer screening adherence rates. J Cancer Educ 31(1):75–83. https://doi.org/10.1007/s13187-015-0791-6

    Article  PubMed  Google Scholar 

  16. Suziedelyte A (2012) How does searching for health information on the Internet affect individuals’ demand for health care services? Soc Sci Med 75(10):1828–1835. https://doi.org/10.1016/j.socscimed.2012.07.022

    Article  PubMed  Google Scholar 

  17. Nagler RH, Puleo E, Sprunck-Harrild K, Viswanath K, Emmons KM (2014) Health media use among childhood and young adult cancer survivors who smoke. Support Care Cancer 22(9):2497–2507. https://doi.org/10.1007/s00520-014-2236-x

    Article  PubMed  PubMed Central  Google Scholar 

  18. Kaplan CP, Napoles A, Davis S, Lopez M, Pasick RJ, Livaudais-Toman J et al (2016) Latinos and cancer information: perspectives of patients, health professionals and telephone cancer information specialists. J Health Dispar Res Pract 9(2):154–167

    PubMed  PubMed Central  Google Scholar 

  19. Lee CJ, Ramirez AS, Lewis N, Gray SW, Hornik RC (2012) Looking beyond the Internet: examining socioeconomic inequalities in cancer information seeking among cancer patients. Health Commun 27(8):806–817. https://doi.org/10.1080/10410236.2011.647621

    Article  PubMed  PubMed Central  Google Scholar 

  20. Anderson NB, Bulatao RA, Cohen B, National Research Council (U.S.) (2004) Panel on Race Ethnicity and Health in Later Life. Critical perspectives on racial and ethnic differences in health in late life. National Academies Press, Washington, D.C.

    Google Scholar 

  21. Richardson A, Allen JA, Xiao H, Vallone D (2012) Effects of race/ethnicity and socioeconomic status on health information-seeking, confidence, and trust. J Health Care Poor Underserved 23(4):1477–1493. https://doi.org/10.1353/hpu.2012.0181

    Article  PubMed  Google Scholar 

  22. Milam JE, Meeske K, Slaughter RI, Sherman-Bien S, Ritt-Olson A, Kuperberg A et al (2015) Cancer-related follow-up care among Hispanic and non-Hispanic childhood cancer survivors: the Project Forward study. Cancer 121(4):605–613. https://doi.org/10.1002/cncr.29105.

    Article  PubMed  Google Scholar 

  23. Harlan LC, Lynch CF, Keegan TH, Hamilton AS, Wu XC, Kato I et al (2011) Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE study. J Cancer Surviv 5(3):305–314. https://doi.org/10.1007/s11764-011-0173-y

    Article  PubMed  PubMed Central  Google Scholar 

  24. Werba BE, Hobbie W, Kazak AE, Ittenbach RF, Reilly AF, Meadows AT (2007) Classifying the intensity of pediatric cancer treatment protocols: the intensity of treatment rating scale 2.0 (ITR-2). Pediatr Blood Cancer 48(7):673–677. https://doi.org/10.1002/pbc.21184

    Article  PubMed  Google Scholar 

  25. Lorig K (1996) Outcome measures for health education and other health care interventions. Sage Publications, Thousand Oaks

    Google Scholar 

  26. Cann A, Calhoun LG, Tedeschi RG, Taku K, Vishnevsky T, Triplett KN et al (2010) A short form of the posttraumatic growth inventory. Anxiety Stress Coping 23(2):127–137. https://doi.org/10.1080/10615800903094273

    Article  PubMed  Google Scholar 

  27. Radloff LS (1977) The CES-D Scale. Appl Psychol Meas 3:385–401

    Article  Google Scholar 

  28. Manierre MJ (2015) Gaps in knowledge: tracking and explaining gender differences in health information seeking. Soc Sci Med 128:151–158. https://doi.org/10.1016/j.socscimed.2015.01.028

    Article  PubMed  Google Scholar 

  29. Bass SB, Ruzek SB, Gordon TF, Fleisher L, McKeown-Conn N, Moore D (2006) Relationship of Internet health information use with patient behavior and self-efficacy: experiences of newly diagnosed cancer patients who contact the National Cancer Institute’s Cancer Information Service. J Health Commun 11(2):219–236. https://doi.org/10.1080/10810730500526794

    Article  PubMed  Google Scholar 

  30. Perales MA, Drake EK, Pemmaraju N, Wood WA (2016) Social media and the adolescent and young adult (AYA) patient with cancer. Curr Hematol Malig Rep. https://doi.org/10.1007/s11899-016-0313-6

  31. Lorence D, Park H (2007) Gender and online health information: a partitioned technology assessment. Health Inf Libr J 24(3):204–209. https://doi.org/10.1111/j.1471-1842.2007.00712.x

    Article  Google Scholar 

  32. Smith A (2012) 46% of American adults are smartphone owners. Pew Research Center, Washington, D.C http://pewinternet.org/Reports/2012/Smartphone-Update-2012.aspx. Accessed September 14 2016

    Google Scholar 

  33. Mills ME, Davidson R (2002) Cancer patients’ sources of information: use and quality issues. Psychooncology 11(5):371–378. https://doi.org/10.1002/pon.584

    Article  PubMed  Google Scholar 

  34. Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J (2005) Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns 57(3):250–261. https://doi.org/10.1016/j.pec.2004.06.006

    Article  PubMed  Google Scholar 

  35. Ayanian JZ, Zaslavsky AM, Guadagnoli E, Fuchs CS, Yost KJ, Creech CM et al (2005) Patients’ perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol 23(27):6576–6586. https://doi.org/10.1200/JCO.2005.06.102

    Article  PubMed  Google Scholar 

  36. Palmer NR, Kent EE, Forsythe LP, Arora NK, Rowland JH, Aziz NM et al (2014) Racial and ethnic disparities in patient-provider communication, quality-of-care ratings, and patient activation among long-term cancer survivors. J Clin Oncol 32(36):4087–4094. https://doi.org/10.1200/JCO.2014.55.5060

    Article  PubMed  PubMed Central  Google Scholar 

  37. Jones BL, Volker DL, Vinajeras Y, Butros L, Fitchpatrick C, Rossetto K (2010) The meaning of surviving cancer for Latino adolescents and emerging young adults. Cancer Nurs 33(1):74–81. https://doi.org/10.1097/NCC.0b013e3181b4ab8f

    Article  PubMed  PubMed Central  Google Scholar 

  38. Meeske KA, Sherman-Bien S, Hamilton AS, Olson AR, Slaughter R, Kuperberg A et al (2013) Mental health disparities between Hispanic and non-Hispanic parents of childhood cancer survivors. Pediatr Blood Cancer 60(9):1470–1477. https://doi.org/10.1002/pbc.24527

    Article  PubMed  PubMed Central  Google Scholar 

  39. Casillas J, Kahn KL, Doose M, Landier W, Bhatia S, Hernandez J et al (2010) Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psychooncology 19(9):982–990. https://doi.org/10.1002/pon.1650

    Article  PubMed  Google Scholar 

  40. Kent EE, Smith AW, Keegan TH, Lynch CF, XC W, Hamilton AS et al (2013) Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer. J Adolesc Young Adult Oncol 2(2):44–52. https://doi.org/10.1089/jayao.2012.0029

    Article  PubMed  PubMed Central  Google Scholar 

  41. United States Census Bureau (2013) Hispanic or Latino origin by specific origin. U.S. Census Bureau’s American community survey office. http://factfinder2.census.gov/

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Funding

This paper was supported by the Whittier Foundation and 1R01MD007801 from the National Institute on Minority Health and Health Disparities of the National Institutes of Health. Additional support was provided by P30CA014089 and T32CA009492 from the National Cancer Institute of the National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Authors and Affiliations

  1. Department of Preventive Medicine, Keck School of Medicine of the University of Southern California, 2001 N Soto Street, Los Angeles, CA, 90032, USA

    Kimberly A. Miller, Cynthia N. Ramirez, Katherine Y. Wojcik, Anamara Ritt-Olson, Lourdes Baezconde-Garbanati, Ann S. Hamilton & Joel E. Milam

  2. Department of Dermatology, Keck School of Medicine of the University of Southern California, Los Angeles, CA, USA

    Kimberly A. Miller

  3. Department of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, CA, USA

    Stefanie M. Thomas & David R. Freyer

  4. Children’s Center for Cancer and Blood Diseases, Children’s Hospital Los Angeles, Los Angeles, CA, USA

    Stefanie M. Thomas & David R. Freyer

  5. USC Norris Comprehensive Cancer Center, Los Angeles, CA, USA

    David R. Freyer

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  1. Kimberly A. Miller
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Correspondence to Kimberly A. Miller.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

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Informed consent was obtained from all individual participants included in the study.

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Miller, K.A., Ramirez, C.N., Wojcik, K.Y. et al. Prevalence and correlates of health information-seeking among Hispanic and non-Hispanic childhood cancer survivors. Support Care Cancer 26, 1305–1313 (2018). https://doi.org/10.1007/s00520-017-3956-5

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