Abstract
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. 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. 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. 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.
Highlights
Breast cancer is the most common cancer in women, and it is the 2nd leading cause of cancer death in Canadian women[1]
This study highlights the critical role that the nurse navigator plays in patient support and dissemination of information
88% of young breast cancer patients survive more than 5 years[1], this particular age group suffers more than older women both physiologically and psychologically[4,5]
Summary
Breast cancer is the most common cancer in women, and it is the 2nd leading cause of cancer death in Canadian women[1]. 7% of female breast cancer patients are diagnosed at 40 years of age or younger[2]. The breast cancer incidence in young women varies with ethnicity and increases with lower socioeconomic status[3]. 88% of young breast cancer patients survive more than 5 years[1], this particular age group suffers more than older women both physiologically (from more-aggressive local and systemic treatment, and premature ovarian failure) and psychologically (from body image changes, relationship distress, marital strain, childcare issues, and alienation from healthy peers)[4,5]. In 2001, in a study conducted by the Canadian Breast Cancer Network and the Ontario Breast Cancer Community Research Initiative called Nothing Fit Me6, Canadian women who had been diagnosed with breast cancer before the age of 40 reported that the care provided by their health care professionals did not meet their complex needs. Survey responders emphasized that supports were inadequate and that information specific to their age group about topics such as the effects of adjuvant chemotherapy on fertility and the methods of coping with both emotional e102
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