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.


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.
Department of Surgery, Washington University School of Medicine, St. Louis, Missouri. Electronic address: fayanjuo@wudosis.wustl.edu.
Oluwadamilola M
OM
Fayanju
Division of General Medical Sciences, Department of Medicine, Washington University School of Medicine, St. Louis, Missouri; The Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, Missouri.
Donna B
DB
Jeffe
Department of Surgery, Washington University School of Medicine, St. Louis, Missouri.
Leisha
L
Elmore
Division of Pulmonary and Critical Care Medicine, Department of Medicine, Washington University School of Medicine, St. Louis, Missouri.
Deborah N
DN
Ksiazek
Department of Surgery, Washington University School of Medicine, St. Louis, Missouri; The Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, Missouri.
Julie A
JA
Margenthaler
D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000473:pathology / Q000628:therapy*; D003695:Delivery of Health Care; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D007348:Insurance, Health / Q000331:legislation & jurisprudence*; D008875:Middle Aged; D009367:Neoplasm Staging
Breast cancer; Delayed diagnosis; Health disparities; Late stage; Qualitative methods; Safety net; St. Louis