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Understanding Cancer Screening Decisions
in Rural Appalachia
Fred Tudiver, MD
East Tennessee State University
Department of Family Medicine
RURAL APPALACHIAN CANCER DEMONSTRATION PROGRAM
ABSTRACT
A single-event decision affecting cancer detection, that is, the health care
provider’s decision to recommend a cancer screening test, was the focus of this
research. The primary purpose of this study was to develop and test a novel measure
to enhance our understanding of the primary health care provider’s decision to
recommend mammography for breast cancer screening. This tool was developed to
measure provider biases regarding certain patient characteristics that may influence
their screening recommendations. These patient characteristics, previously identified
by Appalachian health care providers as associated with cancer detection disparities,
include socio-economic status (SES), fatalism, anxiety, and the quality of the patientprovider relationship.
This material is a copy of a program report to the Centers for Disease
Control and Prevention intended for the purposes of dissemination of
results. This report has not been peer reviewed for the purposes of
publication. This Program was supported in whole by grant # H57-CCH420134.
INTRODUCTION
Why Provider Bias With Regard to Perceptions of Patient's Attitudes Toward
Screening is Important
Appalachians have been called the “invisible” or “neglected minority”. Health and
health care disparities described for racial and ethnic minorities are common among all
races in Appalachia. The cancer burden in the 13 states, all or part of which are in
Appalachia, is well-documented. A study of cancer mortality from 1994 to 1998
supported by the Centers for Disease Control compared all Appalachia, rural
Appalachia, and the Appalachian regions of each state with non-Appalachian regions
and national totals (K1). Mortality rates for all cancers and lung cancer were significantly
higher in rural Appalachia and Appalachia as a whole than national rates (K1.)
A study of Appalachian health disparities published in 2004 by the Appalachian
Regional Commission compared cancer mortality rates by county and subregion
throughout Appalachia with those outside the region by age (35-64 or 65 or older), race
(black or white), and gender (K3). The report stated, “In general, high death rates from
all cancers are predominant in the central portion of the Appalachian region (eastern
Kentucky, northern Tennessee, southern West Virginia, and western Virginia) for all
demographic groups.” (K3, p.7) In addition, “A large cluster of higher outlier counties
occurs in the Central Appalachian region and represents the highest high rate cluster in
the U.S.” (K3, Section 5) Breast cancer mortality rates for white women 65 and older
and all black women were higher than in the U.S. as a whole. Although the report noted
variability among counties in mortality, a significant trend was the number of counties
that had experienced a moderate to large increase in all cancer mortality from 19851997 (K3). Lung cancer mortality was significantly higher in the region across all
demographic groups, with a clustering of high mortality in black men and women in
eastern Tennessee, particularly in the Chattanooga area.
Because Appalachian communities have demonstrated high cancer mortality and
prevalence of a number of cancer risk factors, the region has been identified as an
appropriate source of information and analysis about cancer control, research, and
intervention (K1. MMWR 2002; K2. Friedell 2001). One factor that plays a major role in
cancer survival is screening, and indeed screening disparities are believed to play a role
in the high rate of cancer morbidity and mortality in the region (S&T R1). Screening is
the most effective strategy other than prevention for reducing cancer morbidity and
mortality. (S&T, R5, many refs in Rao, 2004) Over half of cancers can be detected
through screening, with earlier detection improving prognosis. Currently 77% of those
with breast or colorectal cancer will survive at least 5 years after diagnosis. If
recommended cancer screenings were performed on all Americans this rate would
increase to 95%. (S&T, R5) Women in Appalachia have significantly lower breast and
cervical cancer screening rates compared with women in other regions of the country
(S&T R2; K3 Halverson). Colorectal screening rates are, in general, also lower in
Appalachia than outside the region (K3 Halverson). Access to care has been identified
as a barrier to screening (K3, others). Yet, in spite of national programs such as the
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
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CDC-sponsored early breast and cervical cancer detection project, which provides
screening services for low income women, screening disparities remain (K4).
A wide array of access to care factors, including lack of insurance coverage for
screening procedures, transportation difficulties, and geographic isolation contribute to
cancer screening disparities (CA health disparities report, 2004). Service jobs that
employ many Appalachians often do not provide insurance coverage; inadequate health
insurance has been correlated with low mammography screening rates (Qureshi 2000)
and later stage diagnosis of a variety of cancers including melanoma, breast, prostate
and colorectal. However, it is well-documented that SES alone does not account for all
cancer disparities, and that cultural factors also play a role in the screening of groups,
including racial and ethnic minorities and rural residents (Lannin ’98; Coronado, 2005,
Liang, 2004).
Elements of Appalachian culture have been identified as a possible source of
regional health disparities. Characterized as “poor but proud”, uninsured Appalachian
patients may be reluctant to make use of free services offered through such entities as
health departments (K5). Many health care providers in Appalachia are “outsiders”,
having settled in Appalachia from elsewhere in the U.S. or from foreign countries. From
the 1960s, numerous authors described characteristics of Appalachian people, which
included familism, the emphasis on the importance of family, including extended family
and distant relatives who took responsibility for care in time of sickness (Martin And
Henry, 1991, Yelton & Nielson, 1991, Helton, 1996) and a belief in self-reliance (Purnell
& Counts 1998). Because historically life in the mountains was one of hardship with little
control over nature, many scholars attribute Appalachian adoption of fatalism, an
acceptance of what life brings to them, as a way of coping with hardship and poverty
(Yelton & Nielson, 1991, Helton, 1996). Illness may be viewed as a punishment from
God, and recovery equated with forgiveness (Obermiller & Oldenick, 1988, Helton
1996).
More recent authors have noted these characteristics, as well as the influence of
poor socio-economic states (SES) and the importance of religion and spirituality in the
region, but also emphasize the heterogeneity of the Appalachian people, and the
responsibility of health care providers to be more patient-centered, taking their patient’s
wishes into account in their approach to medical decision making (Stewart, Lang), and
caution against stereotyping (Purnell & Counts, 1998). However, in an effort to prepare
practitioners for cultural aspects of Appalachian practice, health professions students
are often provided with descriptions of stereotypical Appalachian patients as fatalistic,
and of low SES (MacAvoy & Lippman 2001). A patient-centered approach may be a
particular challenge for the Appalachian health care provider. Purnell and Counts (1998)
described the Appalachians as accepting or nonjudgmental of others, and therefore
using few adjectives and adverbs in their speech. They may tend to be private,
distrustful of representatives of institutions, e.g., the health care system, and do not
describe their emotions well, which makes developing a good provider-patient
relationship a special challenge (Hitch, 1987; Purnell and Counts, 1998). Purnell and
Counts (1998) have described a multi-step pattern of health seeking behaviors among
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
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Appalachians, which begins with self-care, followed by calling their mother, then a
female relative, using over the counter medications, a neighbor’s recommendation, the
local pharmacist, and finally when all of those remedies fail, consulting a local health
care provider, who may refer the patient to a specialist or a large medical center. This
process may result in late stage diagnoses and poor outcomes, perpetuating a distrust
of the medical establishment as unable to provide a cure.
The Appalachian health care provider may face special challenges to providing
optimal patient care. If adopting a patient-centered approach is difficult, providers may
rely on what they have read about Appalachian patients or have developed biased
perceptions based on limited practice experience. These biases may influence the
cancer screening decisions made by providers. Because of medical advances in
detection and treatment of cancer and unclear guidelines for such decisions as prostate
cancer screening (PSA), it is important to understand both patient and provider factors
influencing the decision to recommend or have a screen performed.
Although there are a number of studies that have examined factors that influence
patients’ decisions regarding their health care, the cognitive processes involved in the
provider screening decision are not well understood. There is substantial evidence that
physicians underscreen certain populations. Many studies have shown that screening
rates for minority populations are significantly lower than for non-Hispanic whites
(Smith, 2002; Smedley).
Although it appears that biases do exist among health care providers, it is
unlikely that providers will recognize them. Pronin (2004) demonstrated that individuals
are more likely to perceive bias in others than in themselves. She reviewed her studies
and others in the literature that show that we tend to assume our own view of the world
as “reality” and those views that differ as different from reality and more reflective of
others’ personalities or backgrounds. Although cognitive processes in provider
screening decision are not well understood, more factors than knowledge come into
play.
PURPOSE AND RESULTS OF THE PROJECT
This study completed an important step in the journey to discover if and how
provider bias exists in this region to act as a barrier to cancer screening. A novel
measure was developed and validated as an appropriate proxy for the actual decision
made by health care providers to order a cancer screening test. It can be used to
compare providers’ screening decision responses with their actual screening decisions
in their practice settings. The research instrument and process developed through this
project has not yet been used to collect data, but our team is now ready to use it in a
future study as the instrument was thoroughly tested with rural Appalachian providers in
the field.
With support from the CDC funded Rural Appalachian Cancer Demonstration
Program, we have completed the development and testing of a novel DVD-based
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
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instrument to assess the influence of provider-patient communication and patient factors
on the decision to screen for cancer. We have named it the Provider Bias Instrument for
Assessing cancer Screening (the “PBIAS”). Using professional actors we developed six
hypothetical vignettes set in rural Appalachia (East TN, East KY, SW VA). These were
brief “trigger” DVD segments portraying an interaction between a PCP and patient
where the subject of cancer screening comes up. Various patient factors were varied
and tested (SES, fatalism, patient anxiety level, strength of provider-patient
relationship), while keeping others constant. We then took these on two rounds of field
trips to test them for agreement (validity) with 50 PCPs in several rural communities of
the Appalachian regions of the 3 states. Focus group interviews were conducted for
each meeting; traditional qualitative analyses were completed to add explanatory
“thickness” to the quantitative analyses.
After each round we edited the vignettes, retrained the actors and re-shot the
trigger DVDs to achieve higher agreement; three more field trips followed. After two
rounds, we have achieved high agreement (75-80% minimum) for every portrayed
communication and patient factor for three DVD vignettes, and for about half of these
factors for the other three vignettes. Other psychometric properties were tested and we
have a validated PBIAS measure.
As of August 2005 the project has data from two rounds of focus group meetings
that were conducted in the states of Tennessee, Virginia and Kentucky. Based on the
data obtained from these two rounds, we have revised the scripts and re-shot the DVDs
for a 3rd round planned later this year.
Changes in Definitions of the Variables
The following are five variables which were included in the two rounds:
1.
2.
3.
4.
5.
Fatalism
Present-day Orientation
Patient Anxiety
Patient-PCP relationship
Socioeconomic status
Cancer Fatalism (1st round) was originally defined as the patient’s belief that there is no
cure for cancer. And, they often think it’s in God’s hands.
In the 2nd round, it was decided not to mention ‘cancer’ to avoid a correct-answer bias.
Therefore the term was replaced with ‘Fatalism’ that was defined as:
• The patient’s belief that there is no cure for their medical condition.
• They think it’s not in their hands because this is their fate.
Present day orientation was originally defined as a way of being or an attitude where
patients do not believe in planning for the future.
• They live for the present.
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
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•
•
They arrive for appointments when they are ready instead of appointed time.
They resist preventive medicine measures and go for these only when they
feel the need.
For the planned 3rd round, Present-day orientation was dropped as it consistently
overlapped with fatalism in the minds of the rural PCPs in the 1st two rounds of the
study. This was reflected in the focus group discussions and the lack of agreement in
the quantitative analyses.
Patient Anxiety was originally defined as the level of anxiety a patient has towards their
health. In the 2nd round it was changed to ‘the levels of anxiety patients have towards
their health.’
Patient-PCP relationship was changed to:
• A strong relationship-patient shows trust, appreciation and effective
communication.
• A poor relationship- patient shows distrust, aggressiveness and ineffective
communication
Socioeconomic status was defined at the start of round 1 as the social class of the
patient. Cues for SES were education level, income level, occupation, dress and
language.
Recommendations for future use of PBIAS
Research with Appalachian primary care providers will be conducted in the future
using the PBIAS instrument. The Rural Appalachian Cancer Demonstration Program
will assist to disseminate and discuss the findings of the project with a primary care
providers and researchers in a number of venues both in south-central Appalachia and
beyond. This will determine the most effective methods for disseminating our findings in
order to change provider attitudes and behavior around how perceptions of
communication and patients influence cancer screening. The intent is to disseminate
findings to primary care providers in order to improve cancer screening rates among
them—in particular, in Appalachian regions where a number of cancer screening and
cancer mortality rates are significantly worse than the national averages.
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
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RESULTS OF PBIAS VALIDATION TO DATE
Table 1: The Demographic results from the 1st round of Focus group meetings held on
April 13, 2005 at Kingsport, TN and on April 18, 2005 at Hazard, KY.
Variable (n)
n (%)
Site (15)
TN
8 (53.3)
KY
7 (46.7)
Gender (15)
Male
6 (40.0)
Female
9 (60.0)
Health Care Profession (15)
NP
5 (33.3)
General IM
2 (13.3)
FP
7 (46.7)
Resident
1 (6.7)
*Member (15)
AAFP
9 (60.0)
SGIM
0 (0.0)
AANP
1 (6.7)
ACP
2 (13.3)
IPSA
1 (6.7)
AMA
1 (6.7)
AOA
2 (13.3)
KMA
1 (6.7)
Population of town of practice (14)
100000-499999
1 (7.1)
25000-99999
6 (42.9)
Less than 25000
7 (50.0)
8 (53.3)
Specialty Certification (15)
9 (64.3)
Group Practice (14)
10 (66.7)
Grew up in Appal. town (15)
9 (60.0)
Teaching affiliation (15)
10 (66.7)
^Diagnosed with cancer (15)
2 (100.0)
Prostate cancer screen (2)
4 (100.0)
Breast cancer screen (4)
3 (100.0)
FOBT screen (3)
2 (66.7)
Colonoscopy screen (3)
mean (sd), min-max
39 (9.71), 28-56
Age
6.54 (6.11), 2-18
How long in practice
23.93 (14.62), 0-50
Hours per week seeing pts
*Not mutually exclusive
^You or someone close to you
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
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Table 2: The Demographic results from the 2nd round of Focus group meetings held on
June1, 2005 at Marion, VA, June 2, 2005 at Wise, VA and June 6, 2005 at Newport, TN.
Variable (n)
n (%)
Site (20)
Marion, VA
8 (40.0)
Wise, VA
4 (20.0)
Newport, TN
8 (40.0)
Gender (19)
Male
8 (42.1)
Female
11 (57.9)
Health Care Profession (19)
NP
10 (52.6)
General IM
3 (15.8)
FP
6 (31.6)
a
Member (19)
AAFP
3 (15.8)
SGIM
1 (5.3)
AANP
2 (10.5)
AACR
1 (5.3)
AAPS
1 (5.3)
ACNP
1 (5.3)
ACP
1 (5.3)
AMA
1 (5.3)
ANA
1 (5.3)
ASH
1 (5.3)
FNP
1 (5.3)
Population of town of practice (19)
25,000-99,999
3 (15.8)
10,000-24,999
5 (26.3)
Less than 10,000
11 (57.9)
17 (89.5)
Specialty Certification (19)
15 (78.9)
Group Practice (19)
10 (52.6)
Grew up in Appal. town (19)
8 (42.1)
Teaching affiliation (19)
b
13 (68.4)
Diagnosed with cancer (19)
c
7 (100)
Prostate cancer screen(7)
c
3 (75.0)
Breast cancer screen (4)
c
14 (100)
FOBT screen (14)
c
14 (100)
Colonoscopy screen(14 )
mean (sd), min-max
51 (8.19), 33-64
Age
16.44 (10.98), 1-36
How long in practice
35.84 (10.05), 0-45
Hours per week seeing pts
a
Not mutually exclusive
b
You or someone close to you
c
n is the number of applicable respondents
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
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Table 3: Agreement figures from Round 1
SCENARIO
SP-3 Betty
SP-1 Evelyn
SP-5 Janie
SP-6 Birdie
Jean
Level %Agree Level %Agree Level %Agree Level %Agree Level %Agree Level %Agree
L
73.3
L
53.3
H
73.3
L
60.0
H
93.3
H
80.0
All*, n=15
Fatalism
Present Day
Orientation
SES
Anxiety
Relationship
Clarity
SP-4 Clara
SP-2 Gwen
L
46.7
L
66.7
H
13.3
H
6.7
H
13.3
H
0.0
H
L
H
H
86.7
40.0
80.0
53.3
L
H
L
H
86.7
73.3
66.7
80.0
L
H
H
H
80.0
26.7
80.0
73.3
H
L
L
H
66.7
86.7
60.0
73.3
H
L
H
H
73.3
60.0
53.3
66.7
L
H
L
H
93.3
26.7
86.7
80.0
*As of 04/20/05
= High Agreement
= Low Agreement
Table 4: Agreement figures from Round 2
SP2 Gwenn
A
n=20
Fatalism
Present Day
Orientation
SES
Anxiety
Relationship
Clarity
Leve
l
SP2 Gwenn
B
%Agree
Leve
l
%Agree
H
100
H
L
73.7
L
L
H
L
H
SP3 Betty
Jean
Leve
l
%Agree
78.9
L
40.0
84.2
H
5.3
SCENARIO
SP4 Clara
SP6 Birdie
Level
%Agree
Leve
l
%Agree
L
94.7
H
L
10.5
H
88.9
L
68.4
L
90.0
H
73.7
H
78.9
H
85.0
L
68.4
L
78.9
H
75.0
H
73.7
H
73.7
H
85.0
H
= HIGH Agreement for 80% agreement rate
= LOW Agreement for 80% agreement rate
100
68.4
94.7
94.7
L
H
L
H
RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
SP8 Della
Mae
SP9
Margie A
SP9 Margie B
Leve
l
%Agree
Leve
l
%Ag
ree
Level
63.2
L
68.4
H
83.3
H
77.8
15.8
H
21.1
H
0
H
0
57.9
73.7
57.9
78.9
H
L
H
H
78.9
78.9
52.6
84.2
H
L
L
H
68.4
57.9
52.6
68.4
H
L
L
H
57.9
57.9
84.2
72.2
9
%Agree
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