Breast cancer patients' experiences within and outside the safety net

Background Following reforms to the breast-cancer referral process for our city's health Safety Net (SN), we compared the experiences from first abnormality to definitive diagnosis of breast-cancer patients referred to Siteman Cancer Center from SN and non-SN (NSN) providers. Materials and methods SN-referred patients with any stage (0-IV) and NSN-referred patients with late-stage (IIB-IV) breast cancer were prospectively identified after diagnosis during cancer center consultations conducted between September 2008 and June 2010. Interviews were taped and transcribed verbatim; transcripts were independently coded by two raters using inductive methods to identify themes. Results Of 82 eligible patients, 57 completed interviews (33/47 SN [70%] and 24/35 NSN [69%]). Eighteen SN-referred patients (52%) had late-stage disease at diagnosis, as did all NSN patients (by design). A higher proportion of late-stage SN patients (67%) than either early-stage SN (47%) or NSN (33%) patients reported feelings of fear and avoidance that deterred them from pursuing care for concerning breast findings. A higher proportion of SN late-stage patients than NSN patient reported behaviors concerning for poor health knowledge or behavior (33% versus 8%), but reported receipt of timely, consistent communication from health care providers once they received care (50% versus 17%). Half of late-stage SN patients reported improper clinical or administrative conduct by health care workers that delayed referral and/or diagnosis. Conclusions Although SN patients reported receipt of compassionate care once connected with health services, they presented with higher-than-expected rates of late-stage disease. Psychological barriers, life stressors, and provider or clinic delays affected access to and navigation of the health care system and represent opportunities for intervention.