Skip to main content

Advertisement

SpringerLink
Log in

What do cancer patients worry about when making decisions about treatment? Variation across racial/ethnic groups

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

The aim of this study was to determine the issues patients worry about when making decisions about cancer treatment. A total of 5,044 colorectal and lung cancer patients from the Cancer Care Outcomes Research and Surveillance Consortium reported their level of worry about (1) treatment side effects, (2) treatment costs, (3) time away from family, (4) time away from work, and (5) transportation to treatment sites. Using multivariable logistic regression, we evaluated the association of sociodemographic, clinical, and psychosocial variables with worry. Overall, 75 % of patients worried about side effects of treatments; 40 %, the cost of treatment; 50 %, time away from family; 52 %, time away from work; and 22 %, about transportation. In multivariable analyses, across all worry domains, older patients had lower odds of reporting worry (p values < 0.001). Patients who perceived less than excellent quality of care, self-assessed their health as less than excellent, and those with a higher cancer stage were more likely to report worry. Asian patients were more likely to report worry than Whites about the cost of treatment and transportation, and relative to Whites, Hispanics were more likely to report worry about transportation (p values < 0.05). Black patients were less likely to report worry about time away from work. Patients worry about issues beyond treatment side effects when making treatment decisions. The pattern of worry varies along sociodemographic, clinical, and psychosocial factors, including race and ethnicity. Understanding the source of patient worry and identifying interventions to alleviate worry are important to delivering patient-centered cancer care.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting (2008) Cancer care for the whole patient: meeting psychosocial health needs. The National Academies Press, Washington DC

    Google Scholar 

  2. Chhatre S, Wein AJ, Malkowicz SB, Jayadevappa R (2011) Racial differences in well-being and cancer concerns in prostate cancer patients. J Cancer Surviv 5(2):182–190

    Article  PubMed  Google Scholar 

  3. Deimling GT, Bowman KF, Sterns S, Wagner LJ, Kahana B (2006) Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psychooncology 15(4):306–320

    Article  PubMed  Google Scholar 

  4. Janz NK, Hawley ST, Mujahid MS et al (2011) Correlates of worry about recurrence in a multiethnic population-based sample of women with breast cancer. Cancer 117(9):1827–1836

    Article  PubMed  Google Scholar 

  5. Butow PN, Phillips F, Schweder J et al (2012) Psychosocial well-being and supportive care needs of cancer patients living in urban and rural/regional areas: a systematic review. Support Care in Cancer 20(1):1–22

    Article  Google Scholar 

  6. Hawley ST, Griggs JJ, Hamilton AS et al (2009) Decision involvement and receipt of mastectomy among racially and ethnically diverse breast cancer patients. J Natl Cancer Inst 101(19):1337–1347

    Article  PubMed  Google Scholar 

  7. Mathews M, West R, Buehler S (2009) How important are out-of-pocket costs to rural patients' cancer care decisions? Can J of Rural Med 14(2):54–60

    Google Scholar 

  8. Sanders SL, Bantum EO, Owen JE, Thornton AA, Stanton AL (2010) Supportive care needs in patients with lung cancer. Psychooncology 19(5):480–489

    Article  PubMed  Google Scholar 

  9. Nelson A (2003) Unequal treatment: confronting racial and ethnic disparities in health care. The National Academies Press, Washington DC

    Google Scholar 

  10. Ayanian JZ, Chrischilles EA, Fletcher RH et al (2004) Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol 22(15):2992–2996

    Article  PubMed  Google Scholar 

  11. Malin JL, Ko C, Ayanian JZ et al (2006) Understanding cancer patients' experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey. Support Care Cancer 14(8):837–848

    Article  PubMed  Google Scholar 

  12. Phillips KM, McGinty HL, Gonzalez BD et al (2012) Factors associated with breast cancer worry 3 years after completion of adjuvant treatment. Psychooncology 22(4):936–969

    Article  PubMed  Google Scholar 

  13. Zullig LL, Jackson GL, Provenzale D, Griffin JM, Phelan S, van Ryn M (2012) Transportation: a vehicle or roadblock to cancer care for VA patients with colorectal cancer? Clin Colorectal Cancer 11(1):60–65

    Article  PubMed  Google Scholar 

  14. Piccirillo JF, Tierney RM, Costas I, Grove L, Spitznagel EL Jr (2004) Prognostic importance of comorbidity in a hospital-based cancer registry. JAMA 291(20):2441–2447

    Article  PubMed  CAS  Google Scholar 

  15. Ware J Jr, Kosinski M, Keller SD (1996) A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 34(3):220–233

    Article  PubMed  Google Scholar 

  16. Sherbourne CD, Stewart AL (1991) The MOS social support survey. Soc Sci Med 32(6):705–714

    Article  PubMed  CAS  Google Scholar 

  17. Guidry JJ, Aday LA, Zhang D, Winn RJ (1998) Cost considerations as potential barriers to cancer treatment. Cancer Pract 6(3):182–187

    Article  PubMed  CAS  Google Scholar 

  18. Guidry JJ, Aday LA, Zhang D, Winn RJ (1997) Transportation as a barrier to cancer treatment. Cancer Pract 5(6):361–366

    PubMed  CAS  Google Scholar 

  19. Hurria A, Wong FL, Villaluna D et al (2008) Role of age and health in treatment recommendations for older adults with breast cancer: the perspective of oncologists and primary care providers. J Clin Oncol 26(33):5386–5392

    Article  PubMed  Google Scholar 

  20. Pisu M, Richardson LC, Kim YI et al (2010) Less-than-standard treatment in rectal cancer patients: which patients are at risk? J Natl Med Assoc 102(3):190–198

    PubMed  Google Scholar 

  21. Quipourt V, Jooste V, Cottet V, Faivre J, Bouvier AM (2011) Comorbidities alone do not explain the undertreatment of colorectal cancer in older adults: a French population-based study. J Am Geriatr Soc 59(4):694–698

    Article  PubMed  Google Scholar 

  22. Kornblith AB, Powell M, Regan MM et al (2007) Long-term psychosocial adjustment of older vs younger survivors of breast and endometrial cancer. Psychooncology 16(10):895–903

    Article  PubMed  Google Scholar 

  23. Bloom JR, Petersen DM, Kang SH (2007) Multi-dimensional quality of life among long-term (5+ years) adult cancer survivors. Psychooncology 16(8):691–706

    Article  PubMed  Google Scholar 

  24. Blanchard-Fields F (2007) Everyday problem solving and emotion: an adult developmental perspective. Current Directions in Psychological Science 16:26–31

    Article  Google Scholar 

  25. Blanchard-Fields F, Mienaltowski A, Seay RB (2007) Age differences in everyday problem-solving effectiveness: older adults select more effective strategies for interpersonal problems. J Gerontol B Psychol Sci Soc Sci 62(1):P61–P64

    Article  PubMed  Google Scholar 

  26. Yi JK, Swartz MD, Reyes-Gibby CC (2011) English proficiency, symptoms, and quality of life in Vietnamese- and Chinese-American breast cancer survivors. J Pain Symptom Manage 42(1):83–92

    Article  PubMed  Google Scholar 

  27. Guadagnolo BA, Boylan A, Sargent M et al (2011) Patient navigation for American Indians undergoing cancer treatment: utilization and impact on care delivery in a regional healthcare center. Cancer 117(12):2754–2761

    Article  PubMed  Google Scholar 

  28. Carroll JK, Humiston SG, Meldrum SC et al (2010) Patients' experiences with navigation for cancer care. Patient Educ and Couns 80(2):241–247

    Article  Google Scholar 

Download references

Acknowledgments

We would like to thank Dr. Don Hill for his review on this manuscript and Shari Lamona for administrative assistance.

Source of support

The CanCORS consortium was supported by grants from the National Cancer Institute (NCI) to the Statistical Coordinating Center (U01 CA093344) and the NCI-supported Primary Data Collection and Research Centers (Dana-Farber Cancer Institute/Cancer Research Network U01 CA093332, Harvard Medical School/Northern California Cancer Center U01 CA093324, RAND/UCLA U01 CA093348, University of Alabama at Birmingham U01 CA093329, University of Iowa U01 CA.093339, University of North Carolina U01 CA 093326) and by a Department of Veterans Affairs grant to the Durham VA Medical Center CRS 02-164. Morehouse School of Medicine/Tuskegee University/University of Alabama Cancer Center Partnership U54CA118948, University of Alabama at Birmingham P30 AG031054.

Conflict of interest

None of the authors have any disclosures.

Author information

Authors and Affiliations

  1. Division of Preventive Medicine, Department of Medicine, University of Alabama at Birmingham, 1717 11th Avenue South, MT 617, Birmingham, AL, 35205, USA

    Michelle Y. Martin & Robert A. Oster

  2. Division of Preventive Medicine, Department of Medicine, University of Alabama at Birmingham, 1717 11th Avenue South, MT 621, Birmingham, AL, 35205, USA

    Mona N. Fouad

  3. Dana Farber Cancer Institute, Harvard Medical School, 450 Brookline Ave, Boston, MA, 02115, USA

    Deborah Schrag

  4. Division of Health Services Research, Department of Pharmacy Practice & Science, The University of Iowa, S 519 PHAR, 115 S. Grand Ave, Iowa City, IA, 52242, USA

    Julie Urmie

  5. School of Social Work, The University of Iowa, 20 West Davenport Street, 308 North Hall, Iowa City, IA, 52242, USA

    Sara Sanders

  6. Division of Preventive Medicine, Department of Medicine, University of Alabama at Birmingham, 1717 11th Avenue South, MT 628, Birmingham, AL, 35205, USA

    Maria Pisu

Authors
  1. Michelle Y. Martin
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Mona N. Fouad
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Robert A. Oster
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Deborah Schrag
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Julie Urmie
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Sara Sanders
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Maria Pisu
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Michelle Y. Martin.

Additional information

This paper was presented in part at the 32nd Annual Meeting & Scientific Sessions of the Society of Behavioral Medicine, Washington, DC (2011).

Rights and permissions

Reprints and permissions

About this article

Cite this article

Martin, M.Y., Fouad, M.N., Oster, R.A. et al. What do cancer patients worry about when making decisions about treatment? Variation across racial/ethnic groups. Support Care Cancer 22, 233–244 (2014). https://doi.org/10.1007/s00520-013-1958-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-013-1958-5

Keywords

Search

Navigation