Skip to main content
Erschienen in: Journal of Cancer Survivorship 3/2013

01.09.2013

Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates

verfasst von: Kimlin Ashing-Giwa, Carolyn Tapp, Shirley Brown, Gingi Fulcher, June Smith, Eudora Mitchell, Rhonda H. Santifer, Kommah McDowell, Virginia Martin, Betty Betts-Turner, DeBorrah Carter, Monica Rosales, Paris Adkins Jackson

Erschienen in: Journal of Cancer Survivorship | Ausgabe 3/2013

Einloggen, um Zugang zu erhalten

Abstract

Purpose

African-American breast cancer survivors (AABCS) suffer the greatest from cancer recurrence, morbidity, and mortality in part due to the lack of cancer follow-up care and surveillance. To improve survival and survivorship, the Institute of Medicine advises that cancer survivors be provided a survivorship care plan (SCP). The current study investigated AABCS’ understanding of SCP and gathered preliminary feedback on infusing cultural and socioecological responsiveness.

Methods

The study embraced a community-based participatory research framework. Three facilitated, structured, consensus meetings were conducted with AABCS (N = 25) and advocates (N = 3) to provide information towards identifying the content domains of an SCP that are culturally responsive to AABCS.

Results

AABCS recommended inclusion of patient-centered information on the purpose and use of the SCP. They raised concerns that higher mortality in AABCS may be due to greater comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP document all comorbidities and medications, regardless of relationship to cancer; referrals for cancer-related providers; and culturally informed health advisories.

Conclusion

Study findings indicate that the available SCP template lacked adequate content on health history, comorbidity, health promotion, and functioning. These factors constitute the underlying clinical, psychosocial, and behavioral risks for poor disease outcomes that may be exacerbated in AABCS.

Implications for Cancer Survivors

SCPs are intended to educate and activate patients to join their oncology care team as informed partners. However, the emerging science and implementation of SCPs seem void of patient input. Our investigation suggests a practical approach for survivor engagement in the SCP discourse to increase their cultural responsiveness and patient-centeredness.
Glossar
ASCO
American Society of Clinical Oncology
AABCS
African-American breast cancer survivors
HRQOL
Health-related quality of life
BCA
Breast cancer
BCS
Breast cancer survivors
CBPR
Community-based participatory research
IOM
Institute of Medicine
SCP
Survivorship care plan
Literatur
1.
Zurück zum Zitat American Cancer Society. Cancer facts & figures 2012. Atlanta: American Cancer Society; 2012. American Cancer Society. Cancer facts & figures 2012. Atlanta: American Cancer Society; 2012.
2.
Zurück zum Zitat Darby SC et al. Long-term mortality from heart disease and lung cancer after radiotherapy for early breast cancer: prospective cohort study of about 300,000 women in US SEER cancer registries. Lancet Oncol. 2005;6(8):557–65.PubMedCrossRef Darby SC et al. Long-term mortality from heart disease and lung cancer after radiotherapy for early breast cancer: prospective cohort study of about 300,000 women in US SEER cancer registries. Lancet Oncol. 2005;6(8):557–65.PubMedCrossRef
3.
Zurück zum Zitat Jacobsen PB, Donovan KA. Psychological co-morbidities of cancer. In: Pagoto S, editor. Psychological co-morbidities of physical illness. Berlin: Springer; 2011. p. 163–205.CrossRef Jacobsen PB, Donovan KA. Psychological co-morbidities of cancer. In: Pagoto S, editor. Psychological co-morbidities of physical illness. Berlin: Springer; 2011. p. 163–205.CrossRef
4.
Zurück zum Zitat Lipscombe LL et al. Increased prevalence of prior breast cancer in women with newly diagnosed diabetes. Breast Cancer Res Treat. 2006;98(3):303–9.PubMedCrossRef Lipscombe LL et al. Increased prevalence of prior breast cancer in women with newly diagnosed diabetes. Breast Cancer Res Treat. 2006;98(3):303–9.PubMedCrossRef
5.
Zurück zum Zitat Mariotto AB et al. Multiple cancer prevalence: a growing challenge in long-term survivorship. Cancer Epidemiol Biomarkers Prev. 2007;16(3):566–71.PubMedCrossRef Mariotto AB et al. Multiple cancer prevalence: a growing challenge in long-term survivorship. Cancer Epidemiol Biomarkers Prev. 2007;16(3):566–71.PubMedCrossRef
6.
Zurück zum Zitat Darby K et al. Exploring the financial impact of breast cancer for African American medically underserved women: a qualitative study. J Health Care Poor Underserved. 2009;20(3):721.PubMedCrossRef Darby K et al. Exploring the financial impact of breast cancer for African American medically underserved women: a qualitative study. J Health Care Poor Underserved. 2009;20(3):721.PubMedCrossRef
7.
Zurück zum Zitat Oeffinger KC, McCabe MS. Models for delivering survivorship care. JCO. 2006;24(32):5117–24.CrossRef Oeffinger KC, McCabe MS. Models for delivering survivorship care. JCO. 2006;24(32):5117–24.CrossRef
8.
Zurück zum Zitat Burg MA et al. The potential of survivorship care plans in primary care follow-up of minority breast cancer patients. J Gen Intern Med. 2009;24 Suppl 2:467–71.CrossRef Burg MA et al. The potential of survivorship care plans in primary care follow-up of minority breast cancer patients. J Gen Intern Med. 2009;24 Suppl 2:467–71.CrossRef
10.
Zurück zum Zitat Horning SJ. Follow-up of adult cancer survivors: new paradigms for survivorship care planning. Hematol Oncol Clin N Am. 2008;22:201–10.CrossRef Horning SJ. Follow-up of adult cancer survivors: new paradigms for survivorship care planning. Hematol Oncol Clin N Am. 2008;22:201–10.CrossRef
11.
Zurück zum Zitat Institute of Medicine. Implementing cancer survivorship care planning: workshop summary. Washington, DC: National Academies; 2007. Institute of Medicine. Implementing cancer survivorship care planning: workshop summary. Washington, DC: National Academies; 2007.
12.
Zurück zum Zitat Ganz PA, Hahn EE. Implementing a survivorship care plan for patients with breast cancer. J Clin Oncol. 2008;26(5):759–67.PubMedCrossRef Ganz PA, Hahn EE. Implementing a survivorship care plan for patients with breast cancer. J Clin Oncol. 2008;26(5):759–67.PubMedCrossRef
13.
Zurück zum Zitat Gilbert SM et al. Cancer survivorship: challenges and changing paradigms. J Urol. 2008;179:431–8.PubMedCrossRef Gilbert SM et al. Cancer survivorship: challenges and changing paradigms. J Urol. 2008;179:431–8.PubMedCrossRef
14.
Zurück zum Zitat Earle CC. Failing to plan is planning to fail: improving the quality of care with survivorship care plans. J Clin Oncol. 2006;24:5112–6.PubMedCrossRef Earle CC. Failing to plan is planning to fail: improving the quality of care with survivorship care plans. J Clin Oncol. 2006;24:5112–6.PubMedCrossRef
15.
Zurück zum Zitat Institute of Medicine. From cancer patient to cancer survivor: lost in transition. Washington, DC: National Academies; 2006. Institute of Medicine. From cancer patient to cancer survivor: lost in transition. Washington, DC: National Academies; 2006.
16.
Zurück zum Zitat Houlihan NG. Transitioning to cancer survivorship: plans of care. Oncol Nurs Ed. 2009;23:42–8. Houlihan NG. Transitioning to cancer survivorship: plans of care. Oncol Nurs Ed. 2009;23:42–8.
17.
Zurück zum Zitat Jacobs LA et al. Adult cancer survivorship: evolution, research, and planning care. CA Cancer J Clin. 2009;59:391–410.PubMedCrossRef Jacobs LA et al. Adult cancer survivorship: evolution, research, and planning care. CA Cancer J Clin. 2009;59:391–410.PubMedCrossRef
18.
Zurück zum Zitat Salz T et al. Survivorship care plans in research and practice. CA Cancer J Clin. 2012;62(2):101–17.CrossRef Salz T et al. Survivorship care plans in research and practice. CA Cancer J Clin. 2012;62(2):101–17.CrossRef
19.
Zurück zum Zitat Ashing-Giwa K. The contextual model of HRQOL: a paradigm for expanding the HRQOL framework. Qual Life Res. 2005;14:297–307.PubMedCrossRef Ashing-Giwa K. The contextual model of HRQOL: a paradigm for expanding the HRQOL framework. Qual Life Res. 2005;14:297–307.PubMedCrossRef
20.
Zurück zum Zitat Farmer DF et al. Attitudes of African American and low socioeconomic status White women toward medical research. J Health Care Poor Underserved. 2007;18(1):85–99.PubMedCrossRef Farmer DF et al. Attitudes of African American and low socioeconomic status White women toward medical research. J Health Care Poor Underserved. 2007;18(1):85–99.PubMedCrossRef
21.
Zurück zum Zitat Wendler D et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2005;3(2):e19.PubMedCrossRef Wendler D et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2005;3(2):e19.PubMedCrossRef
22.
Zurück zum Zitat Institute of Medicine. In: Smedley BD SA, Nelson AR, editors. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academies; 2002. Institute of Medicine. In: Smedley BD SA, Nelson AR, editors. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academies; 2002.
23.
Zurück zum Zitat Hewitt ME et al. Perspectives on post-treatment cancer care: qualitative research with survivors, nurses, and physicians. JCO. 2007;25(16):2270–3.CrossRef Hewitt ME et al. Perspectives on post-treatment cancer care: qualitative research with survivors, nurses, and physicians. JCO. 2007;25(16):2270–3.CrossRef
24.
Zurück zum Zitat Royak-Schaler R et al. Exploring patient–physician communication in breast cancer care for African American women following primary treatment. Oncol Nurs Forum. 2008;35(5):836–43.PubMedCrossRef Royak-Schaler R et al. Exploring patient–physician communication in breast cancer care for African American women following primary treatment. Oncol Nurs Forum. 2008;35(5):836–43.PubMedCrossRef
25.
Zurück zum Zitat Faul LA et al. Survivorship care planning in colorectal cancer: feeback from survivors & providers. J Psychosoc Oncol. 2012;30:198–216.PubMedCrossRef Faul LA et al. Survivorship care planning in colorectal cancer: feeback from survivors & providers. J Psychosoc Oncol. 2012;30:198–216.PubMedCrossRef
26.
Zurück zum Zitat Horowitz CR et al. Effective recruitment of minority populations through community-led strategies. Am J Prev Med. 2009;37(6):S195–200.PubMedCrossRef Horowitz CR et al. Effective recruitment of minority populations through community-led strategies. Am J Prev Med. 2009;37(6):S195–200.PubMedCrossRef
27.
Zurück zum Zitat Miles MB, Humberman AM. Community based participatory research for health. San Francisco: Jossey Bass; 2003. Miles MB, Humberman AM. Community based participatory research for health. San Francisco: Jossey Bass; 2003.
28.
Zurück zum Zitat Ashing-Giwa K et al. Peer-based models of supportive care: the impact of peer support groups in African American breast cancer survivors. Oncol Nurs Forum. 2012;39:585–91.PubMedCrossRef Ashing-Giwa K et al. Peer-based models of supportive care: the impact of peer support groups in African American breast cancer survivors. Oncol Nurs Forum. 2012;39:585–91.PubMedCrossRef
29.
Zurück zum Zitat Fowles ER. Collaborative methodologies for advancing the health of underserved women. Fam Commun Health. 2007;30(1S):S53–63.CrossRef Fowles ER. Collaborative methodologies for advancing the health of underserved women. Fam Commun Health. 2007;30(1S):S53–63.CrossRef
30.
Zurück zum Zitat Ashing-Giwa KT. Can a culturally responsive model for research design bring us closer to addressing participation disparities? Lessons learned from cancer survivorship studies. Ethn Dis. 2005;15(1):130.PubMed Ashing-Giwa KT. Can a culturally responsive model for research design bring us closer to addressing participation disparities? Lessons learned from cancer survivorship studies. Ethn Dis. 2005;15(1):130.PubMed
31.
Zurück zum Zitat O'Brien RL et al. Self-assessment of cultural attitudes and competence of clinical investigators to enhance recruitment and participation of minority populations in research. J Natl Med Assoc. 2006;98(5):674.PubMed O'Brien RL et al. Self-assessment of cultural attitudes and competence of clinical investigators to enhance recruitment and participation of minority populations in research. J Natl Med Assoc. 2006;98(5):674.PubMed
32.
Zurück zum Zitat Minkler M et al. Community-based participatory research: implications for public health funding. Am J Public Health. 2003;93(8):1210–3.PubMedCrossRef Minkler M et al. Community-based participatory research: implications for public health funding. Am J Public Health. 2003;93(8):1210–3.PubMedCrossRef
33.
Zurück zum Zitat Foster J, Stanek K. Cross-cultural considerations in the conduct of community-based participatory research. Fam Commun Health. 2007;30(1):42.CrossRef Foster J, Stanek K. Cross-cultural considerations in the conduct of community-based participatory research. Fam Commun Health. 2007;30(1):42.CrossRef
34.
Zurück zum Zitat Israel BA et al. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202.PubMedCrossRef Israel BA et al. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202.PubMedCrossRef
35.
Zurück zum Zitat Delemos JL. Community-based participatory research: changing scientific practice from research on communities to research with and for communities. Local Environ. 2006;11(3):329–38.CrossRef Delemos JL. Community-based participatory research: changing scientific practice from research on communities to research with and for communities. Local Environ. 2006;11(3):329–38.CrossRef
36.
Zurück zum Zitat Fink A et al. Consensus methods: characteristics and guidelines for use. Am J Public Health. 1984;74(9):979–83.PubMedCrossRef Fink A et al. Consensus methods: characteristics and guidelines for use. Am J Public Health. 1984;74(9):979–83.PubMedCrossRef
37.
Zurück zum Zitat Jones J, Hunter D. Consensus methods for medical and health services research. BMJ: Br Med J. 1995;311(7001):376.CrossRef Jones J, Hunter D. Consensus methods for medical and health services research. BMJ: Br Med J. 1995;311(7001):376.CrossRef
38.
Zurück zum Zitat Bowling A. Research methods in health. Buckingham: Open University Press; 2009. Bowling A. Research methods in health. Buckingham: Open University Press; 2009.
39.
Zurück zum Zitat Krueger RA, Casey MA. Focus groups: a practical guide for applied research. Thousand Oaks: Sage; 2009. Krueger RA, Casey MA. Focus groups: a practical guide for applied research. Thousand Oaks: Sage; 2009.
40.
41.
Zurück zum Zitat Krippendorff K. Content analysis: an introduction to its methodology. Newbury Park: Sage; 1980. Krippendorff K. Content analysis: an introduction to its methodology. Newbury Park: Sage; 1980.
42.
Zurück zum Zitat Olopade OI et al. Advances in breast cancer: pathways to personalized medicine. Clin Cancer Res. 2008;14(24):7988–99.PubMedCrossRef Olopade OI et al. Advances in breast cancer: pathways to personalized medicine. Clin Cancer Res. 2008;14(24):7988–99.PubMedCrossRef
43.
Zurück zum Zitat Huo D et al. Population differences in breast cancer: survey in indigenous African women reveals over-representation of triple-negative breast cancer. J Clin Oncol. 2009;27(27):4515–21.PubMedCrossRef Huo D et al. Population differences in breast cancer: survey in indigenous African women reveals over-representation of triple-negative breast cancer. J Clin Oncol. 2009;27(27):4515–21.PubMedCrossRef
44.
Zurück zum Zitat Morris GJ et al. Differences in breast carcinoma characteristics in newly diagnosed African-American and Caucasian patients. Cancer. 2007;110(4):876–84.PubMedCrossRef Morris GJ et al. Differences in breast carcinoma characteristics in newly diagnosed African-American and Caucasian patients. Cancer. 2007;110(4):876–84.PubMedCrossRef
45.
Zurück zum Zitat Murthy VS et al. Using a family history intervention to improve cancer risk perception in a Black community. J Genet Couns. 2011;20:639–49.PubMedCrossRef Murthy VS et al. Using a family history intervention to improve cancer risk perception in a Black community. J Genet Couns. 2011;20:639–49.PubMedCrossRef
46.
Zurück zum Zitat Kwan ML et al. Dietary patterns and breast cancer recurrence and survival among women with early-stage breast cancer. J Clin Oncol. 2009;27(6):919–26.PubMedCrossRef Kwan ML et al. Dietary patterns and breast cancer recurrence and survival among women with early-stage breast cancer. J Clin Oncol. 2009;27(6):919–26.PubMedCrossRef
47.
Zurück zum Zitat Duijts SFA et al. Effectiveness of behavioral techniques and physical exercise on psychosocial functioning and health-related quality of life in breast cancer patients and survivors—a meta-analysis. Psycho-Oncology. 2011;20(2):115–26.PubMedCrossRef Duijts SFA et al. Effectiveness of behavioral techniques and physical exercise on psychosocial functioning and health-related quality of life in breast cancer patients and survivors—a meta-analysis. Psycho-Oncology. 2011;20(2):115–26.PubMedCrossRef
48.
Zurück zum Zitat McNeely ML et al. Effects of exercise on breast cancer patients and survivors: a systematic review and meta-analysis. Can Med Assoc J. 2006;175(1):34–41.CrossRef McNeely ML et al. Effects of exercise on breast cancer patients and survivors: a systematic review and meta-analysis. Can Med Assoc J. 2006;175(1):34–41.CrossRef
49.
Zurück zum Zitat Minkler M et al. Promoting environmental justice through community-based participatory research: the role of community and partnership capacity. Health Educ Behav. 2008;35(1):119–37.PubMedCrossRef Minkler M et al. Promoting environmental justice through community-based participatory research: the role of community and partnership capacity. Health Educ Behav. 2008;35(1):119–37.PubMedCrossRef
50.
Zurück zum Zitat Henderson PD et al. African American women coping with breast cancer: a qualitative analysis. Oncol Nurs Forum. 2003;30:641–7.PubMedCrossRef Henderson PD et al. African American women coping with breast cancer: a qualitative analysis. Oncol Nurs Forum. 2003;30:641–7.PubMedCrossRef
51.
Zurück zum Zitat Tate JD. The role of spirituality in the breast cancer experiences of African American women. J Holist Nurs. 2011;29(4):249–55.PubMedCrossRef Tate JD. The role of spirituality in the breast cancer experiences of African American women. J Holist Nurs. 2011;29(4):249–55.PubMedCrossRef
52.
Zurück zum Zitat Giese-Davis J et al. Decrease in depression symptoms is associated with longer survival in patients with metastatic breast cancer: a secondary analysis. J Clin Oncol. 2011;29(4):413–20.PubMedCrossRef Giese-Davis J et al. Decrease in depression symptoms is associated with longer survival in patients with metastatic breast cancer: a secondary analysis. J Clin Oncol. 2011;29(4):413–20.PubMedCrossRef
Metadaten
Titel
Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates
verfasst von
Kimlin Ashing-Giwa
Carolyn Tapp
Shirley Brown
Gingi Fulcher
June Smith
Eudora Mitchell
Rhonda H. Santifer
Kommah McDowell
Virginia Martin
Betty Betts-Turner
DeBorrah Carter
Monica Rosales
Paris Adkins Jackson
Publikationsdatum
01.09.2013
Verlag
Springer US
Erschienen in
Journal of Cancer Survivorship / Ausgabe 3/2013
Print ISSN: 1932-2259
Elektronische ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-013-0270-1

Weitere Artikel der Ausgabe 3/2013

Journal of Cancer Survivorship 3/2013 Zur Ausgabe

Update Onkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.