title: Characteristics of women refusing follow-up for tests or symptoms suggestive of breast cancer.
abstract: BACKGROUND
  Delay in diagnosis of breast cancer can occur at several points on the diagnostic pathway. We examined characteristics of women with breast cancer who before diagnosis actively refused recommended follow-up of tests or symptoms suggestive of breast cancer.
  
  
  METHODS
  We identified women aged 50 years or older diagnosed with late-stage (metastatic disease or tumors > or = 3 cm at diagnosis) and a matched sample of women with early-stage (tumors < 3 cm) breast cancer from 1995 to 1999. Using medical records, we investigated clinical characteristics, use of health care, and documentation of care refusal during the 3 years before diagnosis. We used logistic regression models to compare refusers to nonrefusers.
  
  
  RESULTS
  Of the 2694 women studied, 7.2% refused provider follow-up advice during the 3 years. These women were more likely to have late-stage breast cancer at diagnosis than were nonrefusers (odds ratio [OR] = 1.9, 95% confidence interval [CI] = 1.4 to 2.6). They were more likely to be aged 75 years or older (OR = 1.9, 95% CI = 1.4 to 2.7 compared with age 50-64) or to have six or more children (OR = 2.3, 95% CI = 1.3 to 4.2 compared to women with one to two children). Clinical factors associated with refusal included low use of mammography, high use of clinical breast exam, and missed appointments. A minority of women who refused had a reason documented in the medical record; the most frequent reasons were avoidance-denial-fatalism, fear of diagnostic tests, and fear of surgery or disfigurement.
  
  
  CONCLUSIONS
  Our results suggest that certain demographic and clinical characteristics are associated with women's refusal of diagnostic testing for breast cancer. Further study is needed on refusers' characteristics and on how such refusals affect outcomes. Efforts aimed at identifying and counseling women with abnormal results who refuse follow-up are warranted.
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA. sheila.weinmann@kpchr.org
authors.forename: Sheila
authors.initials: S
authors.lastname: Weinmann
authors.forename: Stephen H
authors.initials: SH
authors.lastname: Taplin
authors.forename: Joyce
authors.initials: J
authors.lastname: Gilbert
authors.forename: Robert K
authors.initials: RK
authors.lastname: Beverly
authors.forename: Ann M
authors.initials: AM
authors.lastname: Geiger
authors.forename: Marianne Ulcickas
authors.initials: MU
authors.lastname: Yood
authors.forename: Judy
authors.initials: J
authors.lastname: Mouchawar
authors.forename: M Michele
authors.initials: MM
authors.lastname: Manos
authors.forename: Jane G
authors.initials: JG
authors.lastname: Zapka
authors.forename: Emily
authors.initials: E
authors.lastname: Westbrook
authors.forename: William E
authors.initials: WE
authors.lastname: Barlow
mesh_terms: D000368:Aged; D001943:Breast Neoplasms / Q000175:diagnosis* / Q000453:epidemiology; D016022:Case-Control Studies; D042241:Early Diagnosis; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008327:Mammography / Q000706:statistics & numerical data*; D008403:Mass Screening / Q000379:methods* / Q000706:statistics & numerical data; D008499:Medical Records; D008875:Middle Aged; D009367:Neoplasm Staging; D012307:Risk Factors; D016312:Treatment Refusal; D014481:United States / Q000453:epidemiology