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Characteristics of Women Refusing Follow-up for Tests
or Symptoms Suggestive of Breast Cancer
Sheila Weinmann, Stephen H. Taplin, Joyce Gilbert, Robert K. Beverly, Ann M. Geiger,
Marianne Ulcickas Yood, Judy Mouchawar, M. Michele Manos, Jane G. Zapka,
Emily Westbrook, William E. Barlow

                                                                    patient characteristics associated with this delay. Delay during
Background: Delay in diagnosis of breast cancer can occur           this period can be categorized into three main types: patient
at several points on the diagnostic pathway. We examined            delay, provider delay, and delay due to system factors (11). Of
characteristics of women with breast cancer who before              these, patient delay appears to be a major contributor to un-
diagnosis actively refused recommended follow-up of tests           timely follow-up in some populations (12–14), and explicit
or symptoms suggestive of breast cancer. Methods: We iden-          patient refusal to consent to timely follow-up is one cause of
tified women aged 50 years or older diagnosed with late-             patient delay (13,15,16).
stage (metastatic disease or tumors ≥ 3cm at diagnosis) and             Patient characteristics reportedly associated with delayed
a matched sample of women with early-stage (tumors < 3 cm)          follow-up of a positive mammogram or CBE include low esti-
breast cancer from 1995 to 1999. Using medical records,             mated household income (17), poor health status (12,18), no his-
we investigated clinical characteristics, use of health care,       tory of previous screening mammograms (17), few mammograms

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and documentation of care refusal during the 3 years before         in the 5 years before diagnosis (12), absence of a palpable lump
diagnosis. We used logistic regression models to compare            and atypical symptoms at initial medical consultation (19,20),
refusers to nonrefusers. Results: Of the 2694 women studied,        patient underestimation of the importance of following up a
                                                                    positive test (18), travel or holiday plans (18), patient too busy
7.2% refused provider follow-up advice during the 3 years.
                                                                    (18), patient fearful (18), and transportation problems (12).
These women were more likely to have late-stage breast can-
                                                                    However, little is known about patient characteristics associated
cer at diagnosis than were nonrefusers (odds ratio [OR] =
                                                                    with explicit refusal of follow-up.
1.9, 95% confidence interval [CI] = 1.4 to 2.6). They were               In a case–control study investigating reasons for late-stage
more likely to be aged 75 years or older (OR = 1.9, 95% CI =        breast cancer in seven health maintenance organizations, our re-
1.4 to 2.7 compared with age 50–64) or to have six or more          search team found that women with medical record–documented
children (OR = 2.3, 95% CI = 1.3 to 4.2 compared to women           evidence of patient noncompliance with or refusal of breast care
with one to two children). Clinical factors associated with         before breast cancer diagnosis had higher odds of late-stage
refusal included low use of mammography, high use of                disease than women who did not refuse care (23). We conducted
clinical breast exam, and missed appointments. A minority           a secondary analysis in this population to obtain more informa-
of women who refused had a reason documented in the                 tion on women who refused one or more recommendations for
medical record; the most frequent reasons were avoidance–           follow-up of tests or symptoms suggestive of breast cancer
denial–fatalism, fear of diagnostic tests, and fear of surgery      during the 3 years before breast cancer diagnosis. We examined
or disfigurement. Conclusions: Our results suggest that cer-         the characteristics of these women who refused important aspects
tain demographic and clinical characteristics are associated        of patient care, despite having obtained comprehensive pre-
with women’s refusal of diagnostic testing for breast cancer.       paid healthcare coverage. We also investigated the reasons
Further study is needed on refusers’ characteristics and            the women gave for their actions and the settings in which the
on how such refusals affect outcomes. Efforts aimed at iden-        refusals occurred.
tifying and counseling women with abnormal results who
refuse follow-up are warranted. [J Natl Cancer Inst Monogr
2005;35:33–8]                                                         Affiliations of authors: Center for Health Research, Kaiser Permanente North-
                                                                    west, Portland, OR (SW); Group Health Cooperative, Seattle, WA (SHT, RKB,
                                                                    EW, WEB); Kaiser Permanente Hawaii, Honolulu, HI (JG); Kaiser Permanente
    Delay in timely diagnosis of breast cancer can occur at         Southern California, Pasadena, CA (AMG); Henry Ford Health System, Detroit,
several points on the diagnostic pathway. A growing body of         MI (MUY); Kaiser Permanente Colorado, Denver, CO (JM); Kaiser Permanente
                                                                    Northern California, Oakland, CA (MMM); Medical University of South
literature has investigated demographic and personal charac-
                                                                    Carolina, Charleston, SC (JGZ).
teristics associated with low use of breast cancer screening          Correspondence to: Sheila Weinmann, PhD, 3800 N. Interstate Ave., Portland,
(1–5) and factors associated with delay in seeking medical          OR 97227 (e-mail:
care for breast cancer symptoms (6–10). Also, diagnosis can           See “Notes” following “References.”
be delayed after an abnormal mammogram or clinical breast           DOI: 10.1093/jncimonographs/lgi035
examination (CBE) or after breast cancer symptoms were re-          © The Author 2005. Published by Oxford University Press. All rights reserved.
ported to medical providers (11–22), but less is known about        For Permissions, please e-mail:

Journal of the National Cancer Institute Monographs, No. 35, 2005                                                                             33
METHODS                                                                stractors obtained information about follow-up of the symptoms/
                                                                       abnormal result. Abstractors would choose the option “patient
Setting                                                                refused provider advice” if clinical notes documented that the
                                                                       woman explicitly refused recommended follow-up cancer care
   This study was conducted within the Cancer Research Net-            at the time of the recommendation. They recorded the patient’s
work (CRN), a consortium of research organizations affiliated           stated reason for refusing recommended services as documented
with nonprofit integrated healthcare delivery systems and the           by the provider in the medical record and copied the page from
National Cancer Institute. The CRN consists of the research            the medical record, so that the study analyst could confirm the
programs, enrollee populations, and databases of 11 integrated         abstractor’s interpretation of refusal and further analyze the exact
healthcare organizations that are members of the HMO Research          wording of the notation. The word “refusal” did not have to spe-
Network. The health care delivery systems participating in the         cifically occur in the clinical notes, but it had to be clear to the
CRN are Group Health Cooperative, Harvard Pilgrim Health               abstractor and the analyst that the patient did refuse recom-
Care, Henry Ford Health System/Health Alliance Plan, Health-           mended diagnostic tests at the time they were offered. We did not
Partners Research Foundation, the Meyers Primary Care Institute        attempt to validate this information on refusal by contacting the
of the Fallon Healthcare System/University of Massachusetts,           patient or family. The three settings at which refusal during the
and Kaiser Permanente in six regions: Colorado, Georgia, Hawaii,       study period could occur included 1) a clinical visit, 2) the mam-
Northwest [Oregon and Washington], Northern California, and            mography appointment, and 3) a follow-up telephone encounter.
Southern California. The 11 health plans have nearly 10 million        In addition to refusal information collected in the 3-year period
enrollees. The CRN conducts collaborative research on varia-           before diagnosis, notes made in the chart during the 3-year study
tions in cancer prevention and treatment policies and practices.       period might indicate that the patient was noncompliant or re-
Seven health plans (Kaiser Permanente Northwest, Kaiser Per-           fused breast care prior to the study, and abstractors recorded this
manente Northern California, Kaiser Permanente Southern                prior refusal in a separate variable.
California, Kaiser Permanente Colorado, Kaiser Permanente                  In this analysis, we used the term “refusers” to describe
Hawaii, Henry Ford Health System, and Group Health Coopera-            women whose medical records documented at least one refusal
tive) participated in a study to evaluate the reasons for late-stage   of provider recommendations for follow-up of abnormal screen-

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breast cancer in prepaid health plans. These health plans provide      ing results or breast cancer symptoms during the study period.
comprehensive primary care, including cancer screening, diag-          The term “nonrefusers” is used to describe the study subjects
nosis and treatment, to about 1.5 million women aged 50 years          with no chart notation of refusal of follow-up during this period.
and older. Details of the study design and methods are described       We did not consider any of the following to be refusal of follow-
elsewhere (23). The study was approved by the institutional            up: refusal of screening before a suspicious finding was noted,
review boards of all seven health plans; all IRBs waived informed      delayed initial visit for obvious signs or symptoms, request for a
consent for this data-only study.                                      second opinion, request for a temporary delay where diagnosis
                                                                       occurred within 3 months of the request, or refusal of one diag-
Study Subjects                                                         nostic procedure but acceptance of another (e.g., refusal of addi-
                                                                       tional mammographic views but agreement to ultrasound); these
   In brief, the study included 1347 late-stage breast cancer cases    subjects are classified as nonrefusers.
(women with metastatic cancer or tumors ≥ 3 cm.) diagnosed                 We used education and income information obtained from
between 1995 and 1999 inclusive in women aged 50 years and             the 2000 U.S. Census for census tract of residence as surrogates
older and 1347 control subjects with early-stage breast cancer         for subject education and family income. We calculated the pro-
individually matched to cases on health plan, age within 1 year,       portion of refusers and nonrefusers living in a census tract
and diagnosis within 6 months. Women with a prior history of           where less than 25% of women had a college education (me-
breast cancer were excluded, but women with a history of breast        dian for nonrefusers). We also calculated the proportions of re-
procedures (such as implants, reductions, and biopsies) were not       fusers and nonrefusers with geocoded family income less than
excluded.                                                              $40 000 per year, $40 000 to $54 999 per year, $55 000 to
                                                                       $71 999 per year, and $72 000 per year or more (quartiles for
Data Sources and Measures                                              nonrefusers).

    The study collected data from medical records, cancer regis-       Statistical Analyses
tries, health plan membership databases, pharmacy databases,
and U.S. Census records. Data items collected included demo-               We used descriptive analysis to evaluate the demographic and
graphic variables (age, ethnicity, race, marital status, and census    clinical characteristics of refusers, overall and by stage (late ver-
block group), data on the breast cancer (date of diagnosis, tumor      sus early). We enumerated the reasons documented in the medi-
characteristics), and information on all breast-related medical        cal record for refusal and described the medical settings where
visits in the 3 years up to diagnosis (breast cancer screening ser-    refusal occurred. We also calculated the length of time between
vices provided, any breast cancer symptoms reported, examina-          first refusal of follow-up in the study period and diagnosis date.
tion findings, and follow-up recommendations).                          Since the convention for selecting the diagnosis date varied
    The medical record abstraction collected information on            slightly from one health plan to another, we maintained consis-
refusal of breast care during two periods prior to breast cancer       tency in our analysis across health plans by using the date of the
diagnosis. For each woman reporting breast-related symptoms            pathology procedure at which cancer was confirmed.
during a clinical encounter or those with an abnormal mammo-               We compared refusers with nonrefusers on demographic and
gram or CBE during the 3-year study period, medical record ab-         clinical factors. We fit unconditional logistic-regression models,

34                                                                       Journal of the National Cancer Institute Monographs, No. 35, 2005
adjusting for health plan, stage, and other covariates to calculate                breast cancer cases in the seven health plans during this period
odds ratios for the refuser–nonrefuser comparisons. We initially                   was estimated to be 6.0%.
stratified the analysis on stage (late/early), since stage was the                      Refusers were more likely than nonrefusers to be elderly (35%
basis for the original study’s control group selection (23). Results               aged 75 or older compared with 22% of the nonrefusers) (OR =
within each stage were similar, so only the combined results are                   1.9, 95% CI = 1.4 to 2.7 for age 75 or older compared with ages
presented.                                                                         50–64) (Table 1). Refusers and nonrefusers did not differ materi-
                                                                                   ally by race, menopause status, family history of breast cancer, or
RESULTS                                                                            number of years of health plan enrollment. Refusers were more
                                                                                   likely than nonrefusers to have six or more children (OR = 2.3,
    Of the 2694 women in the study population, 195 (7.2%)                          95% CI = 1.3 to 4.2 for six or more children compared with one
refused provider advice on follow-up at least once during the                      to two children).
3-year observation period according to medical record documen-                         We observed no association between refusal status and me-
tation. This proportion varied by health plan with a range of                      dian family income of the census tract of residence or between
4.9%–10.3%. More refusers (64%) had late-stage breast cancer at                    refusal status and living in a census tract with less than 25% of
diagnosis than did nonrefusers (49%) (odds ratio [OR] = 1.9, 95%                   women with a college education. These variables did not alter the
confidence interval [CI] = 1.4 to 2.5). Since late-stage cases rep-                 results of any of the other demographic or clinical variables.
resented 50% of the study population but only 17.6% of the inci-                       Medical record documentation of refusal or noncompliance
dent invasive breast cancers in these health plans during                          before the study period was more common for refusers during
1995–1999 (based on reporting from four sites), the overall pro-                   the study period (17%) than nonrefusers during the study period
portion of refusers of follow-up among subsequently diagnosed                      (5%) (OR = 3.9, 95% CI = 2.5 to 6.2) (Table 2). Among refusers,

Table 1. Demographic characteristics of breast cancer cases, by evidence of refusal of follow-up*

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                                                         Evidence of refusal                          No evidence of refusal
                                                       of follow-up (N = 195)                        of follow-up (N = 2499)
Characteristic                                         N                     %                       N                     %             OR (95% CI)

  White, non-Hispanic                                 157                   80.5                    1913                 76.6              Reference
  Non-white or Hispanic                                36                   18.5                     578                 23.1          0.86 (0.57 to 1.3)
  Unknown                                               2                    1.0                       8                  0.3                  —
Age group
  50–64                                                82                   42.1                    1302                 52.1              Reference
  65–74                                                44                   22.6                     638                 25.5          1.1 (0.72 to 1.6)
  ≥75                                                  69                   35.4                     559                 22.4          1.9 (1.4 to 2.7)
  Yes                                                 155                   79.5                    2030                 81.2              Reference
  No                                                   19                    9.7                     190                  7.6          1.2 (0.84 to 1.8)
  Unknown                                              21                   10.8                     279                 11.2                  —
Marital status
  Married at diagnosis                                 96                   49.2                    1450                 58.0              Reference
  Not married at diagnosis                             86                   44.1                     902                 36.1          1.3 (0.91 to 1.7)
  Unknown                                              13                    6.7                     147                  5.9                  —
  0                                                    31                   15.9                    335                  13.4          1.4 (0.86 to 2.2)
  1–2                                                  63                   32.3                    977                  39.1              Reference
  3–5                                                  58                   29.7                    788                  31.5          1.2 (0.81 to 1.7)
  ≥6                                                   16                    8.2                    107                   4.3          2.3 (1.3 to 4.2)
  Unknown                                              27                   13.9                    292                  11.7                  —
Family history of breast cancer
  Any                                                  54                   27.7                     790                 31.6          0.88 (0.63 to 1.2)
  None                                                117                   60.0                    1475                 59.0              Reference
  Unknown                                              24                   12.3                     234                  9.4                  —
Total years of health plan enrollment
  3–7                                                  31                   15.9                     463                 18.6          0.91 (0.59 to 1.4)
  8–12                                                 31                   15.9                     470                 18.8          0.84 (0.55 to 1.3)
  ≥13                                                 133                   68.2                    1566                 62.7              Reference
<25% of women in census tract                          92                   47.2                    1187                 47.5          0.98 (0.73 to 1.3)
    with college education
Median income in census tract†
  <$40 000                                             59                   30.3                     679                 27.2              Reference
  $40 000–$54 999                                      52                   26.7                     623                 24.9          0.97 (0.65 to 1.4)
  $55 000–$71 999                                      42                   21.5                     614                 24.6          0.81 (0.52 to 1.3)
  ≥$72 000                                             42                   21.5                     583                 23.3          1.1 (0.68 to 1.7)

  *Logistic regression models adjusted for site, age group, and stage. CI = confidence interval; — = odds ratios not calculated for subjects classified as
  †Quartiles based on distribution among nonrefusers.

Journal of the National Cancer Institute Monographs, No. 35, 2005                                                                                      35
Table 2. Clinical characteristics and medical care use, by evidence of refusal of follow-up

                                                       Evidence of refusal                           No evidence of refusal
                                                     of follow-up (N = 195)                         of follow-up (N = 2499)
Characteristic                                     N                       %                        N                       %                         OR*(95% CI)

Late-stage breast cancer                          124                     63.6                    1223                     48.9                     1.9 (1.4 to 2.6)
Symptoms of breast cancer†
  Yes                                              119                    61.0                    1449                     58.0                          Reference
  No                                                17                     8.7                     206                      8.2                     1.0 (0.72 to 1.7)
  Unknown                                           59                    30.3                     844                     33.8                             —
Method of diagnosis
  Screening mammogram                               37                    19.0                     762                     30.5                          Reference
  Screening CBE                                     16                     8.2                     130                      5.2                     2.3 (2.3 to 4.3)
  Opportunistic CBE                                 15                     7.7                      82                      3.3                     3.2 (1.6 to 6.2)
  Nonscreening mammogram                            43                    22.1                     635                     25.4                     1.3 (0.8 to 2.1)
  Nonscreening CBE                                  78                    40.0                     853                     34.1                     1.1 (1.1 to 2.6)
  Other                                              6                     3.1                      37                      1.5                     2.5 (0.97 to 6.6)
No. of outpatient visits†
  0                                                11                      5.6                     108                      4.3                     1.4 (0.67 to 3.1)
  1–10                                             57                     29.2                     664                     26.6                     1.2 (0.85 to 1.7)
  ≥11                                             127                     65.1                    1727                     69.1                          Reference
Any mammogram†                                    160                     82.1                    2363                     94.6                     0.34 (0.22 to 0.54)
Any screening mammogram†                          100                     51.3                    1812                     72.5                     0.45 (0.33 to 0.62)
No. of clinical breast exams†
  0                                                  1                     0.5                      38                      1.5                     0.48 (0.06 to 3.5)
  1–2                                               37                    18.9                     698                     27.9                          Reference
  3–4                                               69                    35.4                     919                     36.9                     1.6 (1.1 to 2.5)
  ≥5                                                88                    45.1                     844                     33.8                     2.5 (1.7 to 3.8)
No. of missed appointments†
  0                                               144                     73.9                    2103                     84.2                          Reference

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  1                                                29                     14.9                     236                      9.4                     1.9 (1.2 to 3.0)
  2                                                10                      5.1                      91                      3.7                     1.9 (0.91 to 3.9)
  ≥3                                               12                      6.2                      69                      2.7                     2.5 (1.3 to 5.1)
Refusal or non-compliance                          33                     16.9                     112                      4.5                     3.9 (2.5 to 6.2)
     more than 3 y before diagnosis

   *Logistic regression models adjusted for site, age group, and stage. OR = odds ratio, CI = confidence interval; — = odds ratios not calculated for subjects classified
as “unknown”.
   †During period 3 years before diagnosis of breast cancer.

82 (42%) first refused care in the study period between 1 and 3                          For the women who refused care in the study period, we
years before breast cancer diagnosis, whereas 113 (58%) refused                      reviewed the reasons for refusal noted in the medical record
care in the year before breast cancer diagnosis but not during the                   (Table 3). Although in most cases (68%) no reason was recorded,
2 years previously. We calculated a median of 363 days from first                     the most frequently documented reasons for refusal included
refusal of follow-up in the study period to the date of the pathology                avoidance–denial–fatalism (11%), fear of further diagnostic tests
procedure at which cancer was confirmed. For 25% of refusers,                         (4%), fear of surgery and/or disfigurement (3%), and discomfort–
fewer than 32 days passed between first refusal and pathology con-                    pain of mammogram (3%).
firmation. Another 25% of refusers had more than 746 days (slightly                      Most documented refusals occurred at a clinical encounter
more than 2 years) between refusal and pathology confirmation.                        (Table 3). The primary medical services refused by the women
   More than half the refusers (61%) had breast cancer symp-                         involved immediate clinical evaluation and included biopsy, im-
toms noted in the medical chart in the 3 years before breast can-                    mediate mammogram, and surgical referral. Only two of the 14
cer diagnosis; a slightly lower proportion of nonrefusers (58%)                      women who refused care at a mammography visit also refused
had symptoms before diagnosis (Table 2). The two groups did                          care at a clinic visit. Of the 34 subjects who refused care at a
not differ materially in the distribution of breast cancer symp-                     telephone contact, 16 (47%) had also refused care at a clinic
toms reported (i.e., lump, pain, nipple discharge, visual change,                    visit, whereas 18 (53%) had no documentation of previous re-
odor). Fewer refusers (19%) than nonrefusers (31%) were diag-                        fusal of care at a clinic visit or mammography department visit.
nosed using screening mammography; refusers were more likely                         The main procedures refused at a telephone contact involved
than nonrefusers to be diagnosed using CBE.                                          immediate clinical evaluation (surgical referral and immediate
   The refusers used the medical care system; almost all women                       mammogram).
had at least one outpatient visit in the study period, and all but one
had at least one CBE in the study period (Table 2). Refusers were less               DISCUSSION
likely to have mammography in the study period than nonrefusers
(OR = 0.34, 95% CI = 0.22 to 0.54), but they were more likely to                         This report describes a group of women who had prepaid
have five or more CBEs (OR = 2.5, 95% CI = 1.7 to 3.8), compared                      healthcare coverage but actively refused recommended diagnos-
to 1 or 2 CBEs. Refusers were more likely than nonrefusers to have                   tic tests for breast cancer. Most had frequent contact with the
missed one or more appointments (OR = 2.0, 95% CI = 1.4 to 2.9).                     medical system during the 3-year period before breast cancer

36                                                                                      Journal of the National Cancer Institute Monographs, No. 35, 2005
Table 3. Timing, setting, service type, and documented reasons for refusal of     the study period; women may have requested CBE as an alterna-
breast cancer follow-up among women with breast cancer                            tive procedure. Two previous studies conducted in prepaid health
                                                  All subjects with evidence of   plans also found a deficit of mammography among women with
                                                 refusal of follow-up (N = 195)   delayed follow-up of a positive mammogram (12,17).
                                                                                     In our study, the reasons for refusal were not well documented
Characteristic                                      N                      %
                                                                                  in the health plan medical records. Records contained no infor-
Time period of first refusal*                                                      mation on the reason for refusal for more than two-thirds of
  1–3 years before diagnosis                        82                    42.1    refusers. Avoidance and denial were reported for about 11%. Fear
  <1 year before diagnosis but not 1–3             113                    57.9
     years before diagnosis                                                       of diagnostic tests and surgery and fear of disfigurement
Service setting where refusal occurred*,†                                         were also expressed by some. Few subjects in these prepaid
  Mammography or ultrasound visit                   14                     6.6    health plans claimed that financial or family concerns prevented
  Other clinical encounter                         165                    77.5
  Telephone contact                                 34                    16.0
Medical service refused‡                                                             Future efforts encouraging providers to accurately record
  Immediate clinical evaluation                     93                    47.7    reasons for refusal of follow-up would be valuable for later
  Return for additional examination                 46                    23.6    intervention and to better understand this behavior.
  Repeat examination in 4–6 mo                      19                     9.7
  Other or recommendation                           37                    19.0       To our knowledge, few other studies have ascertained patient
     undetermined                                                                 reasons for refusal of or noncompliance with diagnostic testing
Stated reason for refusal according                                               for breast cancer. In a study of elderly African American women
     to notation in medical record                                                attending a public clinic for treatment of chronic illnesses (13),
  Avoidance–denial–fatalism                         22                    11.3
  Discomfort/pain of mammogram                       5                     2.6    27% of the women with abnormal mammograms refused diag-
  Fear of further diagnostic tests                   7                     3.6    nostic follow-up. Reported reasons for refusal included nonspe-
  Fear of surgery and/or disfigurement                6                     3.1    cific “fears” and the belief that they were too old for treatment
  Fear of other treatment                            1                     0.5
  Belief that cancer treatment would                 4                     2.1
                                                                                  Other reasons cited by these women included the desire to “not
     cause or hasten death                                                        want to know if something is wrong” and the perception that
  Psychiatric problems                               3                     1.5    “nothing was bothering them.” A study investigating patient

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  Family problems                                    2                     1.0    reports of processes of care related to breast cancer screening
  Transportation problems                            1                     0.5
  Claimed to be followed by                          4                     2.1    follow-up (24) in four prepaid health plans found high adherence
     another provider                                                             with recommendation for immediate evaluation but lower com-
  Planned to seek nonallopathic                      2                     1.0    pliance with request for additional imaging or 4- to 6-month
     alternative care
  Advanced age                                       2                     1.0
                                                                                  follow-up. Overall, for 7% of subjects with abnormal mammo-
  Too ill                                            1                     0.5    grams, one or more recommended tests were not done. Subjects
  Religious beliefs discouraging                     1                     0.5    reported that lack of adherence was partially due to confusing
     medical treatment                                                            and conflicting information provided by medical personnel.
  Unhappy with health care                           1                     0.5
  Undetermined                                     133                    68.2       Limitations of our study include using medical records to as-
                                                                                  certain the reasons for refusal, which resulted in incomplete
  *During period 3 years before diagnosis of breast cancer.                       documentation and could have been affected by documentation
  †18 subjects refused in multiple settings.                                      bias, since we collected provider notation of the reasons for
  ‡One category per person, in priority order top to bottom.                      refusal, not the women’s self-report. Providers’ perceptions of
                                                                                  these reasons may not have been accurate, and providers may
                                                                                  have selectively recorded some reasons but not others. We did not
diagnosis, and most had received at least one mammogram and                       have information on the level of education or family income of
CBE during this period. Most of these women were later diag-                      study subjects and instead used estimates derived from the U.S.
nosed with late-stage breast cancer.                                              Census block groups. Despite these limitations, the large study
    Among demographic factors, advanced age and high parity                       size and the ethnically and geographically diverse population
were most strongly associated with refusal of follow-up care in                   were major study strengths. Other study strengths included ex-
our study. Concerns about poor general health status may have                     cellent access to medical records to ascertain patterns of health
influenced the decisions of the elderly women; for two, advanced                   care. Almost all selected subjects were included in the analysis.
age was mentioned as the reason for refusal. Otherwise, refusal                   The study collected detailed information on breast-related clini-
reasons mentioned by elderly women and women with high par-                       cal encounters and mammography visits and specifically at-
ity were similar to reasons given by other refusers.                              tempted to collect as much information as possible on patient
    Among clinical and medical-care factors, refusers were more                   refusal of care.
likely than nonrefusers to have a history of refusal of care before                  In conclusion, we found patient refusal of follow-up in a pro-
the study period. Refusers were also about twice as likely as                     portion of this population of health plan members with breast
nonrefusers to have a history of missed medical appointments.                     cancer. Patient characteristics associated with refusal of follow-
Refusers were less likely than nonrefusers to have screening                      up included advanced age, high parity, low use of mammogra-
mammograms in the study period or to be diagnosed using mam-                      phy, high use of CBE, and missed appointments. Although all
mography. Several women cited the discomfort and pain of mam-                     study subjects were eventually diagnosed with breast cancer, our
mograms as the reason for refusing follow-up mammography                          data suggest that refusal of follow-up is associated with delay in
and for refusing mammograms prior to the study period. Dislike                    diagnosis and treatment of same. Further study is needed on the
or fear of mammography also may have been the reason that re-                     characteristics of women who refuse follow-up tests for breast
fusers were more likely than nonrefusers to have more CBEs in                     cancer and the impact of such refusal on outcomes. Also, efforts

Journal of the National Cancer Institute Monographs, No. 35, 2005                                                                                37
aimed at identifying and counseling women with abnormal                             (14) Pal S, Ikeda DM, Birdwell RL. Compliance with recommended follow-up
results who refuse follow-up are warranted.                                              after fine-needle aspiration biopsy of nonpalpable breast lesions: a retro-
                                                                                         spective study. Radiology 1996;201:71–4.
                                                                                    (15) Robertson CL, Kopans DB. Communication problems after mammographic
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     diagnosis and treatment of breast cancer in Washington State and British
     Columbia. Med Care 1993;31:264–8.                                                 We acknowledge the DETECT Study team members who, over several years,
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38                                                                                    Journal of the National Cancer Institute Monographs, No. 35, 2005

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