Barriers to Adherence to Screening Mammography Among Women With Disabilities

Abstract

Objectives. Given the lack of screening mammography studies specific to women with disabilities, we compared reasons offered by women with and without disabilities for not scheduling routine screening visits.

Methods. We surveyed women in the Carolina Mammography Registry aged 40 to 79 years (n = 2970), who had been screened from 2001 through 2003 and did not return for at least 3 years, to determine reasons for noncompliance. In addition to women without disabilities, women with visual, hearing, physical, and multiple (any combination of visual, hearing, and physical) limitations were included in our analyses.

Results. The most common reasons cited by women both with and without disabilities for not returning for screening were lack of a breast problem, pain and expense associated with a mammogram, and lack of a physician recommendation. Women with disabilities were less likely to receive a physician recommendation.

Conclusions. Women with disabilities are less likely than those without disabilities to receive a physician recommendation for screening mammography, and this is particularly the case among older women and those with multiple disabilities. There is a need for equitable preventive health care in this population.

Breast cancer is the most common type of cancer among women in the United States and is the leading cause of cancer deaths among women aged 40 to 59 years.¹ An estimated 192 370 new cases of breast cancer will be diagnosed in American women in 2009.² At present, mammography is the best screening tool to detect breast cancer, and clinical trials have shown that regular screening is the best way for women to lower their risk of dying from breast cancer.³

Women with disabilities, an understudied minority population, are at increased risk of mortality from breast cancer.⁴ Disability is an umbrella term covering impairments, activity limitations, and participation restrictions. The National Health Interview Survey on Disability defines a disability as an activity limitation or a long-term reduction in a person's capacity to perform the usual kind or amount of activities associated with his or her age group as a result of a chronic condition. The definition includes limitations in activities of daily living, play, school, work, walking, remembering, and any other limitation that is considered to be chronic.⁵ The likelihood of having or acquiring a disability increases with age.⁶

People with disabilities constitute a sizable and understudied minority group in the United States. An estimated 19.9 to 28.6 million US women have disabilities, depending on the definition used.⁷ Among Medicare beneficiaries, 64% report at least 1 disabling condition.⁸ According to the 2007 North Carolina Behavioral Risk Factor Surveillance System (BRFSS) annual survey, 31.5% of the noninstitutionalized female adults (aged 18 years or older) residing in the state reported having a disability.^9,10

The 2006 North Carolina BRFSS documented that 8.3% of women with disabilities reported not having undergone a mammogram within 3 years, as compared with 5.7% of women without disabilities.¹¹ Women with disabilities have higher breast cancer mortality rates and are less likely to undergo standard therapy after breast-conserving surgery than are other women.⁴ They are also diagnosed at a later cancer stage than are comparable women without disabilities.¹²

Healthy People 2010 calls for increasing the proportion of health, wellness, and treatment programs and facilities that provide full access for people with disabilities.¹³ According to data from the Office on Disability of the US Department of Health and Human Services, 68% of women older than 40 years without disabilities have had a mammogram, as compared to only 54% of women in that age group with a disability.¹³

The Americans with Disabilities Act (Pub L 101-336, 104 Stat 327), the first civil rights law to specifically address discrimination experienced by people with disabilities, provides guidelines for medical facilities to ensure access for individuals with disabilities. However, for a variety of reasons, most facilities are not in full compliance with this legislation,⁶ creating barriers for women with disabilities.

In describing barriers to screening mammography adherence among women without disabilities,¹³ previous studies have consistently reported a lack of cancer screening knowledge, patients' belief that they are in good health or do not have symptoms attributable to ill health, fear of pain associated with the test, and lack of a clinician recommendation. Although efforts to reduce barriers have had some success, lack of awareness of the need for a mammogram and lack of a recommendation by health care providers remain important barriers among the general population.¹³ There is evidence of persistent disparities in mammography use among women of different races and ethnicities, yet only a few studies, involving mainly focus groups, have focused on barriers to screening among women with disabilities.^14–17 Given the barriers associated with initiation of screening, it is important for women with disabilities who initiate screening to continue with regular examinations.

We conducted a survey among women in the Carolina Mammography Registry (CMR) who had not returned for routine screening for at least 3 years to ascertain their reasons for not returning, with a special emphasis on identifying women with disabilities and comparing them with women without disabilities. The long-term goal of our study, the first to our knowledge to examine barriers to mammography adherence among women with disabilities, is to reduce such barriers and promote regular screening in this population.

METHODS

Our sample was taken from CMR, a population-based mammography registry that links community-based mammography data with North Carolina Central Cancer Registry data to allow examination of screening patterns and outcomes. CMR collects prospective data from mammography facilities in 34 counties across North Carolina.¹⁸ Among the various data gathered from women visiting these facilities are demographic characteristics (date of birth, race/ethnicity, educational level), personal and family history of breast cancer, history of breast procedures, menopausal status, hormone use, height and weight, and date of most recent mammogram. Technologists and radiologists recorded information regarding procedures that have been done, breast density, and their recommendations for follow-up.

Study Sample

All 34 active CMR practices were invited to participate in the study. Their participation required that they send a letter (provided by CMR) to any of their patients we identified as not returning for screening. Women who had visited a mammography facility between 2001 and 2003 were selected for the study if they were aged between 40 and 79 years; they had not visited the facility since December 31, 2003; and their most recent mammogram had been negative. We did not include women younger than 40 years because there is no recommendation for screening among these women. Also, although no recommendations are in place for women aged 70 years or older, CMR includes a large number of women screened aged between 70 and 80 years. Given that cancer rates do not decline with age, we set our upper age limit at 79 years.

Ten of the CMR practices agreed to participate. We excluded 1 small practice with an insufficient number of eligible women. We identified 10 036 women who met the inclusion criteria. Of these women, 151 (1.5%) either had incomplete address data or were deceased, leaving 9885 who received the survey via mail. Of those receiving the survey, 4498 (45.6%) responded. We excluded 132 women who were aged 80 years or older and 1396 women who reported that they had been seen for a mammogram during the time period assessed in the study. These exclusions resulted from a combination of missing registry data, data entry errors, and women undergoing mammograms at facilities not participating in CMR. The final study group included 2970 women.

Identifying a study population of women with disabilities was challenging. After exploring several options including identifying women through durable medical equipment vendors or advocacy organizations such as centers for independent living, we elected to have women self-identify within our population-based registry. This strategy presented 2 challenges: selecting a workable definition for classifying women with disabilities so that women would self-identify and creating questions that would be understood in a short mailed questionnaire.

Questionnaire

The questionnaire was designed to be short, to identify women's general reasons for not returning for screening, and to identify women with physical or sensory disabilities who were willing to complete a more in-depth follow-up questionnaire. We elected to focus on 2 categories of disability—physical and sensory (hearing or vision loss)—both of which were defined according to the National Health Interview Survey on Disability.¹⁹

We developed the study instrument by reviewing and selecting relevant questions from preexisting questionnaires designed to collect data on barriers to mammography and disability information (with expert help from Bowling²⁰ and Skinner,²¹ both experienced survey methodologists). The study team used an iterative process of piloting the questions with volunteers and women with disabilities to ensure that the questions were measuring intended domains.

The questionnaire initially asked how satisfied women were with the services they had received during their most recent mammography visit. Then a checklist of reasons for not returning for screening was provided. Women had the option of checking “all that apply” and “other,” wherein they could write in a response not previously listed. Later questions gave respondents the opportunity to identify themselves as having a sensory or physical limitations. The final question asked whether respondents would be willing to complete a follow-up questionnaire.

Recruitment

Our survey methodology was guided by the recommendations of Dillman.^22–24 In 2007, we sent a letter to women from the practice where they had most recently undergone a mammogram. The letter stated that the practice was working with CMR to gather information on why women had not returned for routine screening. The data would be used by the practice to help improve the services offered to patients and, in combination with data from other practices, would be used for research by CMR. A questionnaire was included with the letter, along with a stamped envelope addressed to the Center for Women's Health Research at the University of North Carolina at Chapel Hill and a $1 payment as an incentive.

Two weeks after the initial mailing, we sent a reminder postcard to women who had not responded. Two weeks after the postcard had been mailed, we sent another copy of the questionnaire to those who had not responded but did not include a second incentive. As questionnaires were returned, they were logged in and the information entered into the study database for later analysis. All data were double entered and checked for data errors.

Data Analysis

We used information reported by the women at their most recent visit to compare responders and nonresponders with respect to age, race, and educational level; we conducted one-sample χ² tests to assess any differences in distributions. Education was an optional variable, and several of the study facilities do not collect this information. We broke down response distributions into 5 groups: 4 groups of women with disabilities and 1 group of women without disabilities. The groups of women with disabilities consisted of those with physical limitations, those with visual limitations, those with hearing limitations, and those with multiple limitations (a combination of visual, hearing, or physical limitations).

We computed descriptive statistics for the sample as a whole and then for each of the 5 groups with respect to demographics, women's level of satisfaction with their most recent visit, and their reasons for not returning. Because disabilities are more likely to be related to age in the case of older women than they are for younger women, we defined older age according to Medicare eligibility and separated the data analysis into 2 age groups, 40 to 64 years and 65 to 79 years.

In our analyses, we calculated 95% confidence intervals rather than P values. We strongly believe that because this was primarily an estimation study, confidence intervals provide more information for readers than P values, and including both would be redundant.

We shared summary data and site-specific comments with each practice. Shared data included the response rate from their practice, number of patient deaths reported, the 3 most common reasons responders from their practice offered for not returning, and, for comparison, the 3 most common reasons women from all of the sites offered for not returning.

RESULTS

Our overall response rate was 46.1%. Responders were slightly younger (76.7% vs 80.5% aged 40–64 years; P < .001) and better educated (college graduate responders 37.4% vs 32.5% without a college degree; P = .002) than were nonresponders, and a higher percentage were White (84.2% vs 78.2% non-White; P < .001). Among the 2970 women who were included in the final sample, 1055 (35.5%) indicated that they had a disability; among the disabled women, 679 (64.4%) had a physical limitation, 83 (7.9%) had a hearing limitation, 60 (5.7%) had a visual limitation, and 233 (22.1%) had multiple limitations. Most multiple limitations were physical limitations in combination with either vision or hearing loss. We compared findings among these 1055 women with findings observed among the 1915 women without disabilities.

Age, Race/Ethnicity, and Education

More women in the disability groups (31.7%–50.6%) than in the nondisability group (18.1%) were aged 65 years or older (Table 1), although the confidence intervals did not overlap. The multiple limitations group included the highest percentage of women aged 65 years or older (50.6%); in the other disability groups, 31.7% to 37.4% of women were in that age group.

TABLE 1.

Distribution of Sample Characteristics, by Limitation Status: Carolina Mammography Registry, 2007

	Women Without Disabilities, % (95% CI)	Women With Disabilities, % (95% CI)	Limitation Group, % (95% CI)
			Visual (n = 60)	Hearing (n = 83)	Physical (n = 679)	Multiple (n = 233)
Age group, y
40–64	81.9 (80.2, 83.7)	62.7 (59.6, 65.5)	68.3 (56.6, 80.1)	62.7 (52.2, 73.1)	66.6 (63.0, 70.1)	49.4 (42.9, 55.8)
≥ 65	18.1 (16.3, 19.8)	37.4 (34.5, 40.4)	31.7 (19.9, 43.4)	37.4 (26.9, 47.8)	33.4 (29.9, 37.0)	50.6 (44.2. 57.1)
Race/ethnicity
African American	14.4 (12.7, 16.0)	15.7 (13.4, 18.0)	15.1 (5.6, 24.7)	6.3 (1.0, 11.7)	15.9 (13.0, 18.8)	18.6 (13.5, 23.8)
White	83.9 (82.1, 85.6)	82.2 (79.7, 84.6)	83.0 (72.9, 93.1)	88.9 (83.2, 96.5)	82.2 (79.1, 85.2)	79.1 (73.7, 84.5)
Other	1.8 (1.2, 2.4)	2.2 (1.2, 3.1)	2.2 (0.0, 5.6)	3.8 (0.0, 8.0)	1.9 (0.9, 3.0)	2.3 (0.3, 4.2)
Educational level
High school or less	12.0 (9.2, 14.3)	26.9 (23.0, 30.8)	21.4 (6.2, 36.6)	29.4 (14.1, 44.8)	23.7 (19.0, 28.4)	35.5 (27.0, 44.1)
Some college	47.6 (44.0, 51.2)	45.5 (41.1, 49.8)	39.3 (21.2, 57.4)	38.2 (21.9, 54.6)	47.8 (42.2, 53.3)	43.0 (34.1, 51.8)
College degree	40.4 (36.9, 44.0)	27.7 (23.7, 31.6)	39.3 (21.2, 57.4)	32.4 (16.6, 48.1)	28.5 (24.0, 33.5)	21.5 (14.2, 28.8)

Note. CI = confidence interval. Sample size for women without disabilities was n = 1915; for women with disabilities n = 1055. Percentages were calculated with nonmissing data.

A much lower percentage of women in the hearing limitations group (6.3%) than in the other disability groups (15.1%–18.6%) were African American. The nondisability group included the lowest percentage of women with less than a high school education (12.0%); the multiple disabilities group included the highest percentage of women in that category (35.5%).

Satisfaction With Services Received

We asked women how satisfied they were with the services they had received during their most recent visit to the mammography facility; response options were very satisfied, satisfied, somewhat satisfied, and not at all satisfied. Overall, the great majority of all women reported that they were satisfied or very satisfied with the services they had received (Table 2). Nearly all (99.3%) of the women with sensory disabilities reported that they were satisfied or very satisfied, along with 96% of women without disabilities and 94% of women with physical or multiple disabilities. Level of satisfaction was not related to age, with the distributions being very similar among those aged 40 to 64 years and those aged 65 years or older.

TABLE 2.

Level of Satisfaction With Most Recent Mammography Visit, by Disability Category and Age Group: Carolina Mammography Registry, 2007

	Women Without Disabilities (n = 1915), % (95% CI)	Limitation Group, % (95% CI)
		Visual (n = 60)	Hearing (n = 83)	Physical (n = 679)	Multiple (n = 233)
Overall sample
Not at all satisfied	1.0 (0.5, 1.5)	0.0	0.0	1.8 (0.8, 2.8)	2.6 (0.6, 4.7)
Somewhat satisfied	3.1 (2.3, 3.9)	1.7 (0.0, 5.0)	0.0	4.8 (3.2, 6.4)	3.5 (1.1, 5.9)
Satisfied	34.7 (32.4, 36.8)	30.5 (18.8, 43.3)	42.0 (31.2, 52.7)	38.4 (34.7, 42.1)	48.3 (41.8, 54.7)
Very satisfied	61.2 (59.0, 63.4)	67.8 (55.9, 79.7)	58.0 (47.3, 68.8)	55.1 (51.2, 58.8)	45.6 (39.1, 52.1)
Women 40–64 y
Not at all satisfied	0.8 (0.4, 1.3)	0.0	0.0	1.6 (0.4, 2.7)	3.6 (0.1, 7.0)
Somewhat satisfied	3.4 (2.5, 4.3)	0.0	0.0	5.4 (3.3, 7.5)	5.4 (1.2, 9.5)
Satisfied	34.6 (32.1, 37.0)	32.5 (18.0, 47.0)	42.3 (28.9, 55.7)	38.6 (34.0, 43.1)	45.5 (36.3, 54.8)
Very satisfied	61.2 (58.8, 63.6)	67.5 (53.0, 82.0)	57.7 (44.3, 71.1)	54.5 (49.9, 59.1)	45.5 (36.3, 54.8)
Women ≥ 65 y
Not at all satisfied	1.8 (0.4, 3.2)	0.0	0.0	2.2 (0.3, 4.2)	1.7 (0.0, 4.1)
Somewhat satisfied	1.8 (0.4, 3.2)	5.3 (0.0, 15.3)	0.0	3.6 (1.1, 6.0)	1.7 (0.0, 4.1)
Satisfied	35.2 (30.1, 40.3)	26.3 (6.5, 46.2)	41.4 (23.4, 59.3)	38.1 (31.7, 44.5)	50.9 (41.7, 60.0)
Very satisfied	61.2 (56.0, 66.4)	68.4 (47.5, 89.4)	58.6 (40.7, 76.6)	56.1 (49.5, 62.6)	45.7 (36.6, 54.8)

Note. CI = confidence interval.

Reasons for Not Scheduling Return Visits

Across the 5 groups, 25.0% to 31.3% of women offered no reason for not returning for screening (Table 3). Among the 68.7% to 75.0% of women who did offer reasons, the most common were as follows: lack of a breast problem (reported by 10.7% to 23.2% of women), the pain associated with a mammogram (reported by 6.5% to 14.2% of women), the expense of a mammogram (reported by 5.5% to 10.2% of women), and lack of a physician recommendation (reported by 5.0% to 16% of women). Lack of a breast problem was the most-cited reason among women in all 5 groups.

TABLE 3.

Reasons Cited by Women for Not Returning for Screening, by Disability Category: Carolina Mammography Registry, 2007

	Women Without Disabilities (n = 1915), % (95% CI)	Limitation Group, % (95% CI)
		Visual (n = 60)	Hearing (n = 83)	Physical (n = 679)	Multiple (n = 233)
No reason given	30.9 (28.7, 33.0)	25.0 (13.7, 36.3)	31.3 (21.1, 41.4)	28.1 (24.6, 31.6)	27.4 (21.5, 33.3)
No breast problem	12.1 (10.6, 13.6)	10.7 (2.6, 18.8)	21.3 (12.3, 30.2)	15.4 (12.6, 18.2)	23.2 (17.7, 28.9)
Too painful	8.5 (7.1, 9.7)	8.9 (1.5, 16.4)	6.5 (0.9, 12.0)	11.8 (9.3, 14.3)	14.2 (9.6, 18.9)
Too expensive	6.4 (5.3, 7.6)	5.5 (0.0, 11.5)	7.6 (1.7, 13.4)	7.5 (5.4, 9.5)	10.2 (6.1, 14.2)
Lack of physician recommendation	5.0 (4.0, 6.0)	7.1 (0.4, 13.9)	5.0 (0.2, 9.8)	7.3 (5.3, 9.3)	16.0 (11.1, 20.8)
Mammogram not necessary	3.7 (2.8, 4.6)	3.6 (0.0, 8.4)	6.3 (0.9, 11.6)	3.0 (1.6, 4.3)	7.8 (4.2, 11.3)
Frustrating to schedule	2.7 (1.9, 3.4)	1.8 (0.0, 5.4)	0.0	1.7 (0.7, 2.7)	2.3 (0.3, 4.3)
Afraid of finding problem	1.2 (0.7, 1.7)	1.8 (0.0, 5.3)	1.3 (0.0, 3.7)	3.0 (1.6, 4.3)	4.6 (1.8. 7.3)
Too time consuming	1.4 (0.9, 2.0)	1.8 (0.0, 5.3)	1.3 (0.0, 3.8)	1.7 (0.7, 2.7)	2.8 (0.6, 4.9)
Dissatisfaction with services	1.3 (0.8, 1.8)	0.0	1.3 (0.0, 3.8)	4.0 (0.5, 2.3)	1.4 (0.0, 2.9)
Access problems (facility)	0.7 (0.3, 1.1)	0.0	0.0	2.3 (1.2, 3.5)	5.5 (2.4, 8.5)
Parking problems	0.5 (0.2, 0.8)	0.0	0.0	1.9 (0.9, 2.9)	5.6 (2.5, 8.6)
Transportation problems	0.6 (0.2, 0.9)	3.6 (0.0, 8.6)	2.5 (0.0, 6.0)	2.6 (1.4, 3.9)	7.9 (4.3, 11.5)

Note. CI = confidence interval.

In the case of all of the reasons reported, the group with multiple limitations included the highest percentages of women citing these reasons. In addition, a high percentage of women with multiple disabilities reported parking and transportation as reasons for not returning. Lack of a physician recommendation, facility access problems, and transportation problems were cited as barriers at least twice as often by women in the multiple disability group as by women in the other groups.

Reasons for not returning differed according to age group (Table 4). A higher percentage of women in the older age group than women in the younger age group reported that they did not have a breast problem. By contrast, younger women were more likely to report that mammograms were painful and to report cost as an issue; only a small percentage of women aged 65 years or older cited this latter reason.

TABLE 4.

Reasons Cited by Women for Not Returning for Screening, by Disability Category and Age Group: Carolina Mammography Registry, 2007

	Women Without Disabilities, %		Limitation Group, %
			Visual		Hearing		Physical		Multiple
	40–64 y (n = 1569)	≥ 65 (n = 346)	40–64 y (n = 41)	≥ 65 y (n = 19)	40–64 y (n = 52)	≥ 65 y (n = 31)	40–64 y (n = 452)	≥ 65 y (n = 227)	40–64 y (n = 115)	≥ 65 y (n = 118)
No reason given	33.4	19.2	15.0	50.0	36.0	23.3	28.7	26.9	25.9	28.8
No breast problem	10.7	18.3	10.0	12.5	116.0	30.0	13.5	19.3	12.0	34.1
Too painful	9.3	4.6	7.5	12.5	6.0	7.4	13.2	8.8	15.5	13.0
Too expensive	7.3	2.2	7.7	0.0	12.0	0.0	10.0	2.0	15.6	4.7
Lack of physician recommendation	4.3	8.2	5.0	12.5	8.0	0.0	7.8	6.3	8.3	23.4
Mammogram not necessary	3.6	4.1	0.0	12.5	2.0	13.3	2.5	3.9	2.8	12.6
Frustrating to schedule	3.1	0.6	2.6	0.0	0.0	0.0	1.8	1.5	2.8	1.9
Afraid of finding problem	1.1	1.6	2.5	0.0	2.0	0.0	3.7	1.5	6.5	2.7
Too time consuming	1.6	0.7	2.5	0.0	0.0	3.7	2.3	0.5	1.8	3.7
Dissatisfaction with services	1.4	1.0	0.0	0.0	0.0	3.7	2.1	0.0	1.8	0.9
Access problems (facility)	0.7	1.0	0.0	0.0	0.0	0.0	2.1	2.9	5.5	5.5
Parking problems	0.5	0.6	0.0	0.0	0.0	0.0	1.6	2.5	6.4	4.7
Transportation problems	0.6	0.6	5.1	0.0	2.0	3.5	2.1	3.9	5.5	10.3

Women in the older age group more often than those in the younger age group cited lack of a physician recommendation to undergo a screening mammogram; 23.4% of older women with multiple limitations reported this reason. The other reason reported mainly by older women, particularly those with vision, hearing, and multiple limitations, was that they did not believe they needed a screening mammogram.

DISCUSSION

This is the first study, to our knowledge, to specifically examine reasons why women with disabilities discontinue regular screening mammography. Because we conducted our study in a screening population, we were able to compare results among women with disabilities and women without disabilities being served in the same mammography practices. The percentage of women in our sample who reported that they had a disability (23.4%) was consistent with estimates from the BRFSS and the US census, according to which approximately 20% of women have a physical or sensory disability.^10,25

There is a complex interaction between the health status of individuals with disabilities and the contextual factors of their environment. This dynamic interaction illustrates the importance of assessing the environment in which medical services are provided.²⁶ Our results demonstrate that women with disabilities face mammography adherence barriers similar to those identified by women without disabilities, including cost, transportation, perceptions of pain associated with mammograms, and lack of knowledge of the importance of undergoing a mammogram. However, we found that women with disabilities more frequently reported transportation, access, and parking difficulties and lack of a physician recommendation as barriers to screening, and women with multiple disabilities reported all problems at a higher rate than women with a single disability or no disabilities.

Although most previous studies have involved focus groups of patients seen in primary care settings, the findings of those studies and our investigation are, by and large, similar. That is, patients with physical disabilities and disabilities in multiple areas have difficulties with transportation and access to facilities and report that poor communication has a negative effect on follow-up care.^14,15,27

In general, more women aged 65 years or older than younger women cited barriers. As might be expected owing to dense breast parenchyma and the possibility of mammograms taking place at a painful time in the menstrual cycle, younger women cited pain as a reason more frequently than older women. Older women (i.e., those on Medicare) cited cost less frequently than younger women. Age was shown to definitely contribute to both the presence of a disability and reported problems with mammography visits. Older women with disabilities were more likely to report that they did not return for screening because they had no breast problem, did not need a mammogram, and had not been told by their physician to undergo one.

A report published by the Centers for Disease Control and Prevention showed that women with functional limitations who are 65 years or older are much less likely than younger women on Medicare to have had a screening mammogram in the preceding 2 years.²⁸ This situation is particularly troublesome given that older age is a risk factor for breast cancer and that explicit recommendations from health care providers to undergo a mammogram have been shown to be a significant predictor of mammogram behavior.²⁹

Among the women who responded to our questionnaire, approximately 30% across all groups did not offer a specific reason for not returning for screening. Similarly, Breen et al., using data from the National Health Interview Survey, found that 29% of the 1354 women in their study gave no specific reason for not undergoing a mammogram.³⁰ The consistency between these findings is important, given the information currently available on breast cancer and the need for early detection, and supports the need for developing alternative ways to educate women about the importance of regular breast screening mammograms. In several other studies involving focus groups with women with disabilities, the same conclusions have been reached; that is, poor communication between and lack of education among patients and providers leads to insufficient standards of preventive care for individuals with disabilities, particularly those with physical disabilities.^14,15,17

Primary care services targeting people with disabilities often focus on underlying debilitating disorders to the exclusion of preventive health concerns.^31,32 Iezzoni et al. examined use of screening and preventive services among adults with mobility problems and found that these individuals were less likely than those without mobility problems to receive preventive services. In particular, women with major lower extremity mobility limitations were less likely than women with no mobility problems to receive a mammogram.³³ Nosek and Howland reported that women with physical disabilities are at higher risk for a delayed diagnosis of breast cancer, primarily because of informational and attitudinal barriers and environmental challenges (e.g., difficulty in positioning for a mammogram).¹⁶ Education and training of technologists and radiologists with a specific focus on providing care to women with disabilities may improve the quality of services offered to these women.

Better oversight to ensure compliance with the guidelines of the Americans with Disabilities Act with respect to providing equal opportunities for individuals with disabilities would be a good place to start. The act outlines specific requirements for accessible health care environments and services. Strategies should include effective education and enforcement at mammography sites. It is clear that women also need to be educated to understand that lack of a current breast problem is not a reason to discontinue screening visits.

In spite of problems that led to women not returning for questioning, most women responded that they were satisfied or very satisfied with the facility where they had they had undergone their most recent mammogram. Neither age nor type of disability affected satisfaction ratings. Kroll et al., in a study of satisfaction with primary care services among adults with physical disabilities, also found generally high levels of satisfaction with primary care doctors and primary care services, even though several key concerns were identified.²⁷

Study Limitations

Our response rate was below 50%, and thus it is not clear whether we captured the spectrum of disability in our study population. The women who reported that they had disabilities responded in ways similar to those of women taking part in other studies focusing on mammography, and 89% of them agreed to participate in a more in-depth follow-up questionnaire. Thus, we believe that we were successful in reaching our targeted population.

In addition, we are unable to make direct comparisons with previous studies focusing on barriers to initiation of screening. However, we found that the barriers that prevent women from initiating screening are similar to the barriers that contribute to them dropping out of screening.

Data on educational level were missing for a large percentage of the women in our study population. This issue was mostly a facility-level problem, in that several of the study facilities do not collect such data. We do not believe that this situation led to any systematic bias in our data.

Our study involved a single population in a single state, and thus our results might not be generalizable to all women with disabilities. However, the women in our sample were seen in rural and urban practices as well as practices of different sizes, and there is no reason to believe that their needs were different from those of women with disabilities elsewhere in the country. We also did not have information on comorbid conditions, which may have affected the care priorities of women and their health care providers and led to preventive services receiving a lower level of priority. Finally, although we acknowledge that race and ethnicity may have an effect on satisfaction with service, our racial/ethnic subgroups were not sufficiently large to allow us to address this issue, which is in need of future research in a larger population.

Conclusions

Women with multiple disabilities reported the most barriers to screening and were least satisfied with the services they had received during their most recent mammography visit. Barriers and levels of dissatisfaction increased in women aged 65 years or older, and these women were less likely to receive a screening recommendation from their health care provider and reported more problems associated with transportation and access.

Women with disabilities need the same breast cancer preventive health guidance and health care services offered to women without disabilities. Preventive care may be even more critical for these women given that their health may be more compromised than that of women without disabilities when they initiate screening. Inadequate accommodations for women with disabilities result in inferior preventive health care services and are a serious public health concern.