Breast cancer patients’ recall of receiving patient assistance services

BACKGROUND: The objective of this study was to assess factors that affect breast cancer patients’ recall of patient assistance services. METHODS: We surveyed newly-diagnosed breast cancer patients and compared recall of receiving patient assistance services at 2 weeks and 6 months in a patient-assistance randomized controlled trial aimed to connect women to such programs. The intervention group received information about assistance programs targeted to their practical, psychosocial, and/or informational needs; the control group received a Department of Health pamphlet about breast cancer and its treatment, including a list of patient assistance services. FINDINGS: Of 333 women, 210 (63%) reported informational, 183 (55%) psychosocial and 177 (53%) practical needs. At 2 weeks, 96% (202/210) of women with informational needs reported receiving informational material but at 6 months, recall dropped to 69% (140/210). All women whose informational needs were met recalled receiving information, compared to 31% whose needs were unmet (p < 0.0001). Of 109 intervention patients with psychosocial or practical needs, 77% (79) contacted a program specified in their action plan at 2 weeks. However, at 6 months, only 39% (31/79) recalled contacting a program. Women without recall were less likely to report having their needs met (6% vs. 58%; p < 0.001). CONCLUSIONS: Recall of patient assistance services is strongly related to having needs met. Use of patient surveys to evaluate utilization or impact of such programs should be used with caution due to poor patient recall. CLINICAL TRIALS # NCT00233077: http://www.clinicaltrials.gov/ct2/show/NCT00233077?term=Nina+Bickell&rank=2