Formal evaluation of PYNK: Breast Cancer Program for Young Women—the patient Perspective

L. Cohen, J. Hamer, C. Helwig, K. Fergus, A. Kiss, R. Mandel, B. Dawson, A. Landsberg, K. Shein, N. Kay, E. Warner

Abstract


Purpose

The aim of the present study was to assess patient satisfaction with pynk: Breast Cancer Program for Young Women so as to determine how the program might be improved and to provide feedback to donors.

Methods

All pynk patients who had consented to have their information entered in our database and who supplied us with their e-mail address were invited to complete a 58-item online questionnaire consisting of multiple choice and open-ended questions. Domains included demographics, provision of written and spoken information, support, infertility risk, research awareness, attitudes toward discharge, and general feedback.

Results

Of 120 pynk patients approached, 61 (51%) participated. More than 90% were satisfied or very satisfied with the timing, usefulness, and clarity of spoken and written information given, and 69% found the service and support provided by the nurse navigator to be the most helpful component of the program. Of those who had received systemic therapy, 93% recalled a health care provider initiating a discussion of the risk of treatment-related infertility, and 67% were referred to a fertility clinic. On the negative side, 11%–27% were unaware of various services provided by pynk, and 11% were unaware of pynk’s ongoing research. One third of patients were unhappy or ambivalent about the prospect of discharge from the program.

Conclusions

Patient satisfaction with this novel program for young women with breast cancer is high. This study highlights the critical role that the nurse navigator plays in patient support and dissemination of information. In contrast to other reported surveys of young cancer patients, pynk patients are routinely given the opportunity to undergo fertility preservation.


Keywords


Breast cancer; young women; support groups; oncofertility; psychosocial interventions; nurse navigator

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DOI: http://dx.doi.org/10.3747/co.23.2773






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ISSN: 1198-0052 (Print) ISSN: 1718-7729 (Online)