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Journal of Cancer Survivorship
Published 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

Authors: 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

Published in: Journal of Cancer Survivorship | Issue 3/2013

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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.
Glossary
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
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Metadata
Title
Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates
Authors
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
Publication date
01-09-2013
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 3/2013
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-013-0270-1

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