Development of the Cancer Survivor Profile-Breast Cancer (CSPro-BC) app: patient and nurse perspectives on a new navigation tool
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Despite advancements in care, cancer survivors continue to report unmet needs following active cancer treatment. The Cancer Survivor Profile-Breast Cancer (CSPro-BC) application (app) was developed to help address these needs, using breast cancer survivors (BCS) as a pilot group. This paper describes the app development, BCS and nurse perceptions of the app, and changes made based on this feedback.
The CSPro-BC app was developed for use on an iPad and includes (1) administration of a 15–20-min survey assessing 18 needs, (2) generation of a profile of needs, relative to a reference group of BCS (median 2 years post-treatment), and (3) provision of problem-specific online resources. Perceptions of the app were evaluated using both quantitative and qualitative approaches. Feedback was elicited from nurse navigators and BCS. BCS were recruited until the point of saturation.
BCS (N = 11) were middle-aged and a median of 2.4 months post active treatment. Structured questionnaires indicated the following: survey covered meaningful problem areas, profile display was clear, and nurse’s involvement was helpful. Follow-up interviews (2 weeks later) revealed that BCS shared their profile with others, but most BCS did not use the resources and those who did thought there were too many. Nurses (N = 3) said the app increased appointment time, but prompted them to discuss areas often not covered in typical BCS follow-up.
Feedback by end users directly informed revision of the app.
Implications for Cancer Survivors
The CSPro-BC app has been optimized based on BCS feedback.
KeywordsCancer survivor Breast cancer Navigation Communication Unmet needs Information technology
Funding for this research is provided to the Principal Investigator Michael Feuerstein, PhD, MPH, by Murtha Cancer Center through a Congressional Special Interest project.
Compliance with ethical standards
Conflict of interest
Amanda Gehrke declares that she has no conflict of interest. Sukhyung Steve Lee declares that he has no conflict of interest. Karrie Hilton declares she has no conflict of interest. Barbara Ganster declares she has no conflict of interest. Rebecca Trupp declares she has no conflict of interest. Corinne McCullough declares she has no conflict of interest and Elizabeth Mott declares she has no conflict of interest. Michael Feuerstein is the editor of the Journal of Cancer Survivorship. This paper was subjected to full peer review.
This protocol was approved by the Internal Review Boards of the Walter Reed National Military Medical Center and the Uniformed Services University of the Health Sciences. All procedures performed in this study 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.
Informed consent was obtained from all breast cancer participants.
The opinions or assertions contained herein are the private ones of the authors and are not to be construed as official or reflecting the views of the Department of Defense, Walter Reed National Military Medical Center, or the Uniformed Services University of the Health Sciences.
- 7.Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the “silver tsunami”: prevalence trajectories and comorbidity burden among older cancer survivors in the United States. 2016:1029–36.Google Scholar
- 9.Vissers P, Thong M, Pouwer F, Zanders M, Coebergh J, Van De Poll-Franse L. The impact of comorbidity on health-related quality of life among cancer survivors: analyses of data from the PROFILES registry. J Cancer Surviv. 2013;7(4):602–13. https://doi.org/10.1007/s11764-013-0299-1.CrossRefPubMedGoogle Scholar
- 14.Wang K, Liu X, Wang L, He Y. Associations of anxiety and psychological distress with cancer in US adults: results from the 2012 National Health Interview Survey. Am J Cancer Epidemiol Prev. 2014;2(1):20–31.Google Scholar
- 15.Koch-Gallenkamp L, Bertram H, Eberle A, Holleczek B, Schmid-Höpfner S, Waldmann A, et al. Fear of recurrence in long-term cancer survivors—do cancer type, sex, time since diagnosis, and social support matter? Health Psychol. 2016;35(12):1329–33. https://doi.org/10.1037/hea0000374.CrossRefPubMedGoogle Scholar
- 34.Halbach SM, Ernstmann N, Kowalski C, Pfaff H, Pförtner T-K, Wesselmann S, et al. Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment. Patient Educ Couns. 2016;99(9):1511–8. https://doi.org/10.1016/j.pec.2016.06.028.CrossRefPubMedGoogle Scholar
- 35.Schmidt A, Ernstmann N, Wesselmann S, Pfaff H, Wirtz M, Kowalski C. After initial treatment for primary breast cancer: information needs, health literacy, and the role of health care workers. Support Care Cancer. 2016;24(2):563–71. https://doi.org/10.1007/s00520-015-2814-6.CrossRefPubMedGoogle Scholar
- 36.Chawla N, Blanch-Hartigan D, Virgo KS, Ekwueme DU, Han X, Forsythe L, et al. Quality of patient-provider communication among cancer survivors: findings from a nationally representative sample. J Oncol Pract. 2016;12(12):e964–e73. https://doi.org/10.1200/JOP.2015.006999.CrossRefPubMedPubMedCentralGoogle Scholar
- 37.Fleisher L, Wen KY, Miller SM, Diefenbach M, Stanton AL, Ropka M, et al. Development and utilization of complementary communication channels for treatment decision making and survivorship issues among cancer patients: the CIS Research Consortium Experience. Internet Interv. 2015;2(4):392–8. https://doi.org/10.1016/j.invent.2015.09.002.CrossRefPubMedPubMedCentralGoogle Scholar
- 38.Palos GR, Gilmore KR, Lewis-Patterson PA, Chapman P, Rodriguez MA. Exploring patient-provider communication about cancer survivorship care in community-dwelling survivors. Proc Am Soc Clin Oncol. 2016;34(3_suppl):86. https://doi.org/10.1200/jco.2016.34.3_suppl.86.
- 41.Kenzik KM, Kvale EA, Rocque GB, Demark-Wahnefried W, Martin MY, Jackson BE, et al. Treatment summaries and follow-up care instructions for cancer survivors: improving survivor self-efficacy and health care utilization. Oncologist. 2016;21(7):817–24. https://doi.org/10.1634/theoncologist.2015-0517.CrossRefPubMedPubMedCentralGoogle Scholar
- 44.Institute of Medicine, National Research Council. From cancer patient to cancer survivor: lost in transition. Washington, DC: The National Academies Press; 2006.Google Scholar
- 47.Michele O. Implementing the commission on cancer standards for survivorship care plans. Clin J Oncol Nurs. 2014;18(1):15.Google Scholar
- 58.Wagner EH, Glasgow RE, Davis C, Bonomi AE, Provost L, McCulloch D, et al. Quality improvement in chronic illness care: a collaborative approach. Jt Comm J Qual Patient Saf. 2001;27(2):63–80.Google Scholar
- 59.Groen WG, Kuijpers W, Oldenburg HS, Wouters MW, Aaronson NK, van Harten WH. Empowerment of cancer survivors through information technology: an integrative review. J Med Internet Res. 2015;17(11)Google Scholar
- 62.Streiner DL, Norman GR. Health measurement scales—a practical guide to their development and use (second edition). New York: Oxford University Press; 1995.Google Scholar
- 64.SurveyMonkey Inc. SurveyMonkey. San Mateo, California, USA. https://www.surveymonkey.com/.