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Racial Differences in Information Needs During and After Cancer Treatment: a Nationwide, Longitudinal Survey by the University of Rochester Cancer Center National Cancer Institute Community Oncology Research Program

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Abstract

Before treatment, cancer patients need information about side effects and prognosis, while after treatment they need information to transition to survivorship. Research documenting these needs is limited, especially among racial and ethnic minorities. This study evaluated cancer patients’ needs according to race both before and after treatment. We compared white (n = 904) to black (n = 52) patients receiving treatment at 17 National Cancer Institute Community Oncology Research Program (NCORP) sites on their cancer-related concerns and need for information before and after cancer treatment. Two-sample t test and chi-squared analyses were used to assess group differences. Compared to white patients, black patients reported significantly higher concerns about diet (44.3 vs. 25.4 %,) and exercise (40.4 vs. 19.7 %,) during the course of treatment. Compared to whites, blacks also had significantly higher concern about treatment-related issues (white vs. black mean, 25.52 vs. 31.78), self-image issues (7.03 vs. 8.60), family-related issues (10.44 vs. 12.84), and financial concerns (6.42 vs. 8.90, all p < 0.05). Blacks, compared to whites, also had significantly greater post-treatment information needs regarding follow-up tests (8.17 vs. 9.44), stress management (4.12 vs. 4.89), and handling stigma after cancer treatment (4.21 vs. 4.89) [all p < 0.05]. Pre-treatment concerns and post-treatment information needs differed by race, with black patients reporting greater information needs and concerns. In clinical practice, tailored approaches may work particularly well in addressing the needs and concerns of black patients.

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References

  1. Choi KH, Park JH, Park SM (2011) Cancer patients’ informational needs on health promotion and related factors: a multi-institutional, cross-sectional study in Korea. Support Care Cancer 19:1495–504. doi:10.1007/s00520-010-0973-z

    Article  PubMed  Google Scholar 

  2. Lambert SD, Girgis A et al (2013) “You need something like this to give you guidelines on what to do”: patients’ and partners’ use and perceptions of a self-directed coping skills training resource. Support Care Cancer 21:3451–60. doi:10.1007/s00520-013-1914-4

    Article  PubMed  Google Scholar 

  3. Carlsson M (2000) Cancer patients seeking information from sources outside the health care system. Support Care Cancer 8:453–7

    CAS  PubMed  Google Scholar 

  4. James N, Daniels H, Rahman R, McConkey C, Derry J, Young A (2007) A study of information seeking by cancer patients and their carers. Clin Oncol 19:356–62

    Article  CAS  Google Scholar 

  5. Bottorff JL, Johnson JL, Bhagat R et al (1998) Beliefs related to breast health practices: the perceptions of South Asian women living in Canada. Soc Sci Med 47:2075–85

    Article  CAS  PubMed  Google Scholar 

  6. Gregg J, Curry RH (1994) Explanatory models for cancer among African-American women at two Atlanta neighborhood health centers: the implications for a cancer screening program. Soc Sci Med 39:519–26

    Article  CAS  PubMed  Google Scholar 

  7. Pérez-Stable EJ, Sabogal F, Otero-Sabogal R et al (1992) Misconceptions about cancer among Latinos and Anglos. JAMA 268:3219–23

    Article  PubMed  Google Scholar 

  8. Kakai H, Maskarinec G, Shumay DM, Tatsumura Y, Tasaki K (2003) Ethnic differences in choices of health information by cancer patients using complementary and alternative medicine: an exploratory study with correspondence analysis. Soc Sci Med 56:851–62

    Article  PubMed  Google Scholar 

  9. Matthews AK, Sellergren SA, Manfredi C, Williams M (2002) Factors influencing medical information seeking among African American cancer patients. J Health Commun 7:205–19

    Article  PubMed  Google Scholar 

  10. Ayanian JZ, Cleary PD, Weissman JS, Epstein AM (1999) The effect of patients' preferences on racial differences in access to renal transplantation. N Engl J Med 341:1661–9. doi:10.1056/nejm199911253412206

    Article  CAS  PubMed  Google Scholar 

  11. Eheman CR, Berkowitz Z, Lee J et al (2009) Information-seeking styles among cancer patients before and after treatment by demographics and use of information sources. J Health Commun 14:487–502

    Article  PubMed  PubMed Central  Google Scholar 

  12. Muñoz-Antonia T, Ung D, Montiel-Ishino FA, Nelson A, Canales J, Quinn GP (2015) African Americans’ and Hispanics’ information needs about cancer care. J Cancer Educ 30:327–32. doi:10.1007/s13187-014-0721-z

    Article  PubMed  PubMed Central  Google Scholar 

  13. Cawley M, Kostic J, Cappello C (1990) Informational and psychosocial needs of women choosing conservative surgery/primary radiation for early stage breast cancer. Cancer Nurs 13:90–4

    Article  CAS  PubMed  Google Scholar 

  14. Luker KA, Beaver K, Leinster SJ, Owens RG, Degner LF, Sloan JA (1995) The information needs of women newly diagnosed with breast cancer. J Adv Nurs 22:134–41

    Article  CAS  PubMed  Google Scholar 

  15. Harrison-Woermke DE, Graydon JE (1993) Perceived informational needs of breast cancer patients receiving radiation therapy after excisional biopsy and axillary node dissection. Cancer Nurs 16:449–55

    Article  CAS  PubMed  Google Scholar 

  16. Johnson JE, Nail LM, Lauver D, King KB, Keys H (1998) Reducing the negative impact of radiation therapy on functional status. Cancer 61:46–51

    Article  Google Scholar 

  17. Rees CE, Bath PA (2001) Information-seeking behaviors of women with breast cancer. Oncol Nurs Forum 28:899–907

    CAS  PubMed  Google Scholar 

  18. Jones DA, Ainsworth BE, Croft JB et al (1998) Moderate leisure-time physical activity: who is meeting the public health recommendations? A national cross-sectional study. Arch Fam Med 7:285–9

    Article  CAS  PubMed  Google Scholar 

  19. Huang LC, Tran TB, Ma Y, Ngo JV, Rhoads KF (2015) Factors that influence minority use of high-volume hospitals for colorectal cancer care. Dis Colon Rectum 58:526–32. doi:10.1097/dcr.0000000000000353

    Article  PubMed  PubMed Central  Google Scholar 

  20. Olszewski AJ, Shrestha R, Cook NM (2015) Race-specific features and outcomes of nodular lymphocyte-predominant Hodgkin lymphoma: analysis of the National Cancer Data Base. Cancer 121(19):3472–80. doi:10.1002/cncr.29527

    Article  PubMed  Google Scholar 

  21. Royak-Schaler R, Passmore SR et al (2008) Exploring patient-physician communication in breast cancer care for African American women following primary treatment. Oncol Nurs Forum 35:836–43. doi:10.1188/08.ONF.836-843

    Article  PubMed  Google Scholar 

  22. Ayanian JZ, Zaslavsky AM et al (2005) (2005) Patients’ perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol 23(27):6576–86

    Article  PubMed  Google Scholar 

  23. Boulware LE, Cooper LA, Ratner LE, LaVeist TA, Powe NR (2003) Race and trust in the health care system. Public Health Rep 118:358–65

    Article  PubMed  PubMed Central  Google Scholar 

  24. Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S (1999) Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med 14:537–46

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  25. Henderson PD, Gore SV, Davis BL, Condon EH (2003) African American women coping with breast cancer: a qualitative analysis. Oncol Nurs Forum 30:641–7

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Department of Surgery, University of Rochester Medical Center, 265 Crittenden Blvd, Box 420658, Rochester, NY, 14642, USA

    Matthew Asare, Luke J. Peppone, Joseph A. Roscoe, Ian R. Kleckner, Karen M. Mustian, Charles E. Heckler, Joseph J. Guido & Charles Kamen

  2. Metro Minnesota Community Oncology Research Consortium, Saint Louis Park, USA

    Mark Sborov

  3. Rochester Regional Health System, Rochester, USA

    Peter Bushunow

  4. Wisconsin NCORP, Marshfield, USA

    Adedayo Onitilo

Authors
  1. Matthew Asare
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  2. Luke J. Peppone
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  3. Joseph A. Roscoe
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  4. Ian R. Kleckner
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  5. Karen M. Mustian
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  6. Charles E. Heckler
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  7. Joseph J. Guido
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  8. Mark Sborov
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  9. Peter Bushunow
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  10. Adedayo Onitilo
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  11. Charles Kamen
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Corresponding author

Correspondence to Matthew Asare.

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The study was approved by the Institutional Review Board of the University of Rochester Medical Center. Written informed consent was obtained from each participant.

Conflict of Interest

The authors declare that they have no conflict of interest.

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Asare, M., Peppone, L.J., Roscoe, J.A. et al. Racial Differences in Information Needs During and After Cancer Treatment: a Nationwide, Longitudinal Survey by the University of Rochester Cancer Center National Cancer Institute Community Oncology Research Program. J Canc Educ 33, 95–101 (2018). https://doi.org/10.1007/s13187-016-1038-x

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  • DOI: https://doi.org/10.1007/s13187-016-1038-x

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