Abstract
Purpose
Racial disparities in cancer treatment-related symptom burden are well documented and linked to worse treatment outcomes. Yet, little is known about racial differences in patients’ treatment-related symptom management experiences. Such understanding can help identify modifiable drivers of symptom burden inequities. As part of the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) study, we examined racial differences in symptom management experiences among Black and White breast cancer survivors (BCS).
Methods
We conducted six focus groups (n = 3 Black BCS groups; n = 3 White BCS groups) with 22 stages I–IV BCS at two cancer centers. Focus groups were audio-recorded and transcribed verbatim. Based on key community-based participatory research principles, our community/academic/medical partner team facilitated focus groups and conducted qualitative analyses.
Results
All BCS described positive symptom management experiences, including clinician attentiveness to symptom concerns and clinician recommendations for pre-emptively managing symptoms. Black BCS commonly reported having to advocate for themselves to get information about treatment-related symptoms, and indicated dissatisfaction regarding clinicians’ failure to disclose potential treatment-related symptoms or provide medications to address symptoms. White BCS often described dissatisfaction regarding inadequate information on symptom origins and clinicians’ failure to offer reassurance.
Conclusions
This study elucidates opportunities for future research aimed at improving equity for cancer treatment-related symptom management. For Black women, warnings about anticipated symptoms and treatment for ongoing symptoms were particular areas of concern. Routine symptom assessment for all women, as well as clinicians’ management of symptoms for racially diverse cancer patients, need to be more thoroughly studied and addressed.
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References
Vandyk AD, Harrison MB, Macartney G, Ross-White A, Stacey D (2012) Emergency department visits for symptoms experienced by oncology patients: a systematic review. Support Care Cancer 20(8):1589–1599. https://doi.org/10.1007/s00520-012-1459-y
Eversley R, Estrin D, Dibble S, Wardlaw L, Pedrosa M, Favila-Penney W (2005) Post-treatment symptoms among ethnic minority breast cancer survivors. Oncol Nurs Forum 32(2):250–256. https://doi.org/10.1188/05.ONF.250-256
Walling AM, Weeks JC, Kahn KL, Tisnado D, Keating NL, Dy SM et al (2015) Symptom prevalence in lung and colorectal cancer patients. J Pain Symptom Manag 49(2):192–202. https://doi.org/10.1016/j.jpainsymman.2014.06.003
Coyle N, Adelhardt J, Foley KM, Portenoy RK (1990) Character of terminal illness in the advanced cancer patient: pain and other symptoms during the last four weeks of life. J Pain Symptom Manag 5(2):83–93
Kenzik KM, Ganz PA, Martin MY, Petersen L, Hays RD, Arora N et al (2015) How much do cancer-related symptoms contribute to health-related quality of life in lung and colorectal cancer patients? A report from the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium. Cancer 121(16):2831–2839. https://doi.org/10.1002/cncr.29415
Huang IC, Brinkman TM, Kenzik K, Gurney JG, Ness KK, Lanctot J et al (2013) Association between the prevalence of symptoms and health-related quality of life in adult survivors of childhood cancer: a report from the St Jude Lifetime Cohort study. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 31(33):4242–4251. https://doi.org/10.1200/JCO.2012.47.8867
Black B, Herr K, Fine P, Sanders S, Tang X, Bergen-Jackson K et al (2011) The relationships among pain, nonpain symptoms, and quality of life measures in older adults with cancer receiving hospice care. Pain Med 12(6):880–889. https://doi.org/10.1111/j.1526-4637.2011.01113.x
McNeill JA, Reynolds J, Ney ML (2007) Unequal quality of cancer pain management: disparity in perceived control and proposed solutions. Oncol Nurs Forum 34(6):1121–1128. https://doi.org/10.1188/07.onf.1121-1128
Yee MK, Sereika SM, Bender CM, Brufsky AM, Connolly MC, Rosenzweig MQ (2017) Symptom incidence, distress, cancer-related distress, and adherence to chemotherapy among African American women with breast cancer. Cancer. https://doi.org/10.1002/cncr.30575
Kwok W, Bhuvanakrishna T (2014) The relationship between ethnicity and the pain experience of cancer patients: a systematic review. Indian Journal of Palliative Care 20(3):194–200. https://doi.org/10.4103/0973-1075.138391
Cleeland CS, Gonin R, Baez L, Loehrer P, Pandya KJ (1997) Pain and treatment of pain in minority patients with cancer. The Eastern Cooperative Oncology Group Minority Outpatient Pain Study. Ann Intern Med 127(9):813–816
Walling AM, Keating NL, Kahn KL, Dy S, Mack JW, Malin J et al (2016) Lower patient ratings of physician communication are associated with unmet need for symptom management in patients with lung and colorectal cancer. J Oncol Pract 12(6):e654–e669. https://doi.org/10.1200/jop.2015.005538
John DA, Kawachi I, Lathan CS, Ayanian JZ (2014) Disparities in perceived unmet need for supportive services among patients with lung cancer in the cancer care outcomes research and surveillance consortium. Cancer 120(20):3178–3191. https://doi.org/10.1002/cncr.28801
Mosher CE, Duhamel KN, Egert J, Smith MY (2010) Self-efficacy for coping with cancer in a multiethnic sample of breast cancer patients: associations with barriers to pain management and distress. Clin J Pain 26(3):227–234. https://doi.org/10.1097/AJP.0b013e3181bed0e3
Pinheiro LC, Samuel CA, Reeder-Hayes KE, Wheeler SB, Olshan AF, Reeve BB (2016) Understanding racial differences in health-related quality of life in a population-based cohort of breast cancer survivors. Breast Cancer Res Treat 159(3):535–543. https://doi.org/10.1007/s10549-016-3965-y
Wright JL, Takita C, Reis IM, Zhao W, Lee E, Hu JJ (2014) Racial variations in radiation-induced skin toxicity severity: data from a prospective cohort receiving postmastectomy radiation. Int J Radiat Oncol Biol Phys 90(2):335–343. https://doi.org/10.1016/j.ijrobp.2014.06.042
Yoon J, Malin JL, Tisnado DM, Tao ML, Adams JL, Timmer MJ et al (2008) Symptom management after breast cancer treatment: is it influenced by patient characteristics? Breast Cancer Res Treat 108(1):69–77. https://doi.org/10.1007/s10549-007-9580-1
Janz NK, Mujahid MS, Hawley ST, Griggs JJ, Hamilton AS, Katz SJ (2008) Racial/ethnic differences in adequacy of information and support for women with breast cancer. Cancer 113(5):1058–1067. https://doi.org/10.1002/cncr.23660
Diette GB, Rand C (2007) The contributing role of health-care communication to health disparities for minority patients with asthma. Chest 132(5 Suppl):802s–809s. https://doi.org/10.1378/chest.07-1909
Mandelblatt JS, Yabroff KR, Kerner JF (1999) Equitable access to cancer services: a review of barriers to quality care. Cancer 86(11):2378–2390
Fortner BV, Okon TA, Portenoy RK (2002) A survey of pain-related hospitalizations, emergency department visits, and physician office visits reported by cancer patients with and without history of breakthrough pain. The Journal of Pain: Official Journal of the American Pain Society 3(1):38–44
Mayer DK, Travers D, Wyss A, Leak A, Waller A (2011) Why do patients with cancer visit emergency departments? Results of a 2008 population study in North Carolina. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 29(19):2683–2688. https://doi.org/10.1200/JCO.2010.34.2816
The People’s Institute for Survival and Beyond. Undoing racism. The People’s Institute for Survival and Beyond. 2017. http://www.pisab.org/our-principles. Accessed July 19 2017
Hagan TL, Donovan HS (2013) Ovarian cancer survivors’ experiences of self-advocacy: a focus group study. Oncol Nurs Forum 40(2):140–147. https://doi.org/10.1188/13.ONF.A12-A19
Krueger RA, Casey MA (2015) Participants in a focus group focus groups: a practical guide for applied research, 5ed edn. SAGE Publications, Inc.
Boyatzis RE (1998) Transforming qualitative information: thematic analysis and code development. London, & New Delhi SAGE Publications, Thousand Oaks
Patton MQ (1990) Qualitative evaluation and research methods 2ed. Newbury Park Sage Publications
Saldana J (2009) An introduction to codes and coding the coding manual for qualitative reserachers. SAGE Publications, Los Angeles, CA
Cleeland CS, Gonin R, Hatfield AK, Edmonson JH, Blum RH, Stewart JA et al (1994) Pain and its treatment in outpatients with metastatic cancer. N Engl J Med 330(9):592–596. https://doi.org/10.1056/NEJM199403033300902
Fisch MJ, Lee JW, Weiss M, Wagner LI, Chang VT, Cella D et al (2012) Prospective, observational study of pain and analgesic prescribing in medical oncology outpatients with breast, colorectal, lung, or prostate cancer. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 30(16):1980–1988. https://doi.org/10.1200/JCO.2011.39.2381
Burgess DJ, Gravely AA, Nelson DB, van Ryn M, Bair MJ, Kerns RD et al (2013) A national study of racial differences in pain screening rates in the VA health care system. Clin J Pain 29(2):118–123. https://doi.org/10.1097/AJP.0b013e31826a86ae
Castel LD, Saville BR, Depuy V, Godley PA, Hartmann KE, Abernethy AP (2008) Racial differences in pain during 1 year among women with metastatic breast cancer: a hazards analysis of interval-censored data. Cancer 112(1):162–170. https://doi.org/10.1002/cncr.23133
Martinez KA, Snyder CF, Malin JL, Dy SM (2014) Is race/ethnicity related to the presence or severity of pain in colorectal and lung cancer? J Pain Symptom Manag 48(6):1050–1059. https://doi.org/10.1016/j.jpainsymman.2014.02.005
Samuel CA, Turner K, Donovan HAS, Beckjord E, Cardy A, Dew MA et al (2017) Provider perspectives on barriers and facilitators to adjuvant endocrine therapy-related symptom management. Support Care Cancer. https://doi.org/10.1007/s00520-017-3799-0
Ferrell BR, Temel JS, Temin S, Alesi ER, Balboni TA, Basch EM et al (2017) Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 35(1):96–112. https://doi.org/10.1200/jco.2016.70.1474
Smith TJ, Temin S, Alesi ER, Abernethy AP, Balboni TA, Basch EM et al (2012) American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 30(8):880–887. https://doi.org/10.1200/jco.2011.38.5161
Institute of Medicine (IOM) (2008) Cancer care for the whole patient: meeting psychosocial health needs. National Academies Press (US), Washington, DC
Anderson KO, Mendoza TR, Valero V, Richman SP, Russell C, Hurley J et al (2000) Minority cancer patients and their providers: pain management attitudes and practice. Cancer 88(8):1929–1938
Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P et al (2016) Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology 34(6):557–565. https://doi.org/10.1200/JCO.2015.63.0830
Cleeland CS, Wang XS, Shi Q, Mendoza TR, Wright SL, Berry MD et al (2011) Automated symptom alerts reduce postoperative symptom severity after cancer surgery: a randomized controlled clinical trial. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 29(8):994–1000. https://doi.org/10.1200/JCO.2010.29.8315
Berry DL, Blumenstein BA, Halpenny B, Wolpin S, Fann JR, Austin-Seymour M et al (2011) Enhancing patient-provider communication with the electronic self-report assessment for cancer: a randomized trial. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 29(8):1029–1035. https://doi.org/10.1200/JCO.2010.30.3909
Schenker Y, Arnold R (2017) Toward palliative care for all patients with advanced cancer. JAMA Oncology. https://doi.org/10.1001/jamaoncol.2017.1059
Williams R, White P, Nieto J, Vieira D, Francois F, Hamilton F (2016) Colorectal cancer in African Americans: an update. Clinical and Translational Gastroenterology 7(7):e185. https://doi.org/10.1038/ctg.2016.36
Coleman Wallace DA, Baltrus PT, Wallace TC, Blumenthal DS, Rust GS (2013) Black white disparities in receiving a physician recommendation for colorectal cancer screening and reasons for not undergoing screening. J Health Care Poor Underserved 24(3):1115–1124. https://doi.org/10.1353/hpu.2013.0132
Bromley EG, May FP, Federer L, Spiegel BM, van Oijen MG (2015) Explaining persistent under-use of colonoscopic cancer screening in African Americans: a systematic review. Prev Med 71:40–48. https://doi.org/10.1016/j.ypmed.2014.11.022
Funding
This study was conducted with funding support from the National Cancer Institute Award Diversity Supplement Award (grant number: 3 R01 CA150980-04S1).
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The authors declare that they have no conflict of interest.
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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.
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Samuel, C.A., Schaal, J., Robertson, L. et al. Racial differences in symptom management experiences during breast cancer treatment. Support Care Cancer 26, 1425–1435 (2018). https://doi.org/10.1007/s00520-017-3965-4
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DOI: https://doi.org/10.1007/s00520-017-3965-4