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More individuals are surviving catastrophic injuries and living longer with persistent disability; however, their receipt of clinical preventive services is not well understood as compared with those without disabilities given the dual focus of care on both primary prevention and the prevention of secondary complications related to their disabilities.
Longitudinal analyses of 1999–2002 Medical Expenditure Survey (MEPS). Study sample consisted of 3,183 community-dwelling women aged 51–64 years and followed for 2 full years. Women with disabilities were defined as having reported any limitation in any area of activity of daily living in 2 years. Recommended clinical preventive services were defined as receiving the following at the recommended intervals: colorectal, cervical, and breast cancer; cholesterol screening; and influenza immunization. χ2 tests and multiple logistic regressions were used to examine variations in use of clinical preventive services.
Overall, 23% of the women in the study (n = 835) were disabled. Disabled women, however, were less likely to receive mammography and Pap smears within the recommended intervals. However, disabled women were more likely to receive influenza immunization, cholesterol screening, and colorectal screening within the recommended intervals. Among the disabled, usual source of care and health insurance remained significant predictors of receipt of clinical preventive services across all types,
Disabled women were less likely to receive some of the cancer screening services, suggesting a need for targeted interventions to promote breast cancer and cervical cancer screening. Increased access to health care insurance and health care providers may also help.
In 2000, nearly 50 million people in the US lived with some type of long-lasting disability (Waldrop & Stern, 2003). In older ages, the rate of disability among women is higher than men (Freedman, Martin, & Schoeni, 2004). Overall, the life expectancy of those who survive catastrophic injuries has increased (Lollar, 2002), partially because of the ability to treat and manage complex medical issues, as well as the related disabilities. However, living with a disability requires participation in health promotion and preventive care activities similar to the general population. The goal of health care for individuals with disabilities is 2-pronged, with a focus on both primary preventive care for general health and on secondary prevention aimed at preventing or reducing secondary complications related to the original disability (Rimmer, 1999). Healthy People 2010 included a section to target disability to encourage health care, particularly for areas of secondary complications or comorbidities (US Department of Health and Human Services, 2000). Therefore, much recent research has focused on preventing secondary complications seemingly deemphasizing primary general health prevention efforts (Coyle & Santiago, 2002; Klingbeil, Baer, & Wilson, 2004; Zorowitz, Gross, & Polinski, 2002).
Individuals with disability or high-risk chronic disease should be carefully screened for prevention of other diseases that could interact to cause further disability (Fried, Bandeen-Roche, Kasper, & Guralnik, 1999). However, because other issues related to the medical management of disability, use of clinical preventive services may never occur. Recent theories on clinical preventive services suggest physicians are faced with competing demands during medical encounters with physical comorbidities, chronic illnesses, and psychosocial problems, and that these demands are perceived as major barriers to the provision of clinical preventive services (Flocke, Frank, & Wenger, 2001; Jaen, Stange, & Nutting, 1994; Nutting et al., 2001). Similarly, unrelated disorders are less likely to be treated in patients with chronic illnesses. For example, similar to the disabled in many respects, because of their decreased ability to perform daily tasks and dependency on others for help, elderly patients who have chronic medical diseases have been found to be undertreated for unrelated disorders (Redelmeier, Tan, & Booth, 1998). For example, lower levels of cancer screening services are observed among older adults with common chronic health problems (Fontana, Baumann, Helberg, & Love, 1997). It has also been reported that in family practice, during outpatient illness visits, delivery rates were uniformly lower for all clinical preventive services (Stange, Flocke, Goodwin, Kelly, & Zyzanski, 2000).
In the context of disabled women, these theories and studies seem to suggest missed opportunities for the use of clinical preventive services because of multiple demands that compete for the attention of physicians and patients. Further complicating access is that the disabled may have several care providers. Multiple providers addressing a coordination of disability and other related medical issues may hinder provision of clinical preventive services as the focus of care is disability oriented, causing physicians to unintentionally overlook preventive care needs (Lawthers, Pransky, Peterson, & Himmelstein, 2003).
The few recent studies on the use of clinical preventive services by those with disabilities report mixed results and that the receipt of clinical preventive services varied by type of services. Disability has been reported to be a significant, independent risk factor for not receiving mammograms and Pap smears (Chan et al., 1999). In some studies, disabled women generally reported screening and preventive services at rates comparable to all women (Iezzoni, McCarthy, Davis, Harris-David, & O’Day, 2001). However, women with mobility impairments were less likely to receive cancer screening services (Iezzoni, McCarthy, Davis, & Siebens, 2000). In addition, severity of disability has also been found to affect the receipt of preventive care (Diab & Johnston, 2004). Among women with multiple sclerosis, those with more severe mobility impairment were less likely to receive cancer screening services than those with less impairment (Cheng et al., 2001). In specific subgroups such as American Indians with spinal cord injuries, rates of cholesterol screening were lower compared with those without spinal cord injuries (Krause, Coker, Charlifue, & Whiteneck, 1999).
As mentioned, for some types of clinical preventive services disability was not a barrier. Chan and colleagues (1999) concluded that those with 1 or 2 functional limitations were more likely to receive influenza vaccinations than those without functional limitations. American Indians with spinal cord injuries reported greater frequency of immunizations for influenza and pneumonia than those without spinal cord injuries (Krause, Coker, Charlifue, & Whiteneck, 1999). Individuals with specific types of disability that involved mobility limitations were as likely as others to receive influenza immunizations (Iezzoni et al., 2000).
Although previous studies have shed some light on the association between presence and severity of disability on receipt of clinical preventive services, these studies have limitations. Most of the studies use cross-sectional designs. Cheng and colleagues (2001) used an antiquated definition of health as the absence of disease. Some studies use data from the early 1990s (Iezzoni et al., 2001) or focus only on specific populations such as Medicare beneficiaries (Chan et al., 1999), selected states (Diab & Johnston, 2004; Ramirez, Farmer, Grant, & Papachristou, 2005), specific type of disability (Iezzoni et al., 2000), or specific subgroups such as American Indians (Krause et al., 1999).
Our study extends previous research by using a nationally representative sample of women aged 51–64 years with and without functional, activity, and sensory limitations living in US households to analyze the association between disability and the receipt of clinical preventive services among women with disability. Our study uses a longitudinal measure of disability by defining functional, activity, and sensory limitations over a 2-year period. In addition, we examine variations in receipt of clinical preventive services by socioeconomic status, race and ethnicity, health status, chronic illness, and access to care among the disabled. In this paper, clinical preventive services consisted of cancer screening services, influenza immunization, and cholesterol screening.
Our study uses the Household Component of the Medical Expenditure Panel Survey (MEPS), a nationally representative survey of the US noninstitutionalized civilian population. Each year a new panel of individuals is selected and followed for a maximum of 2 years for utilization expenditures and other information over 5 rounds of interviews. For this paper, because of our focus on persistent disability, we used the longitudinal nature of MEPS data to our advantage and studied those with 2 complete years of survey data. The disabled were defined as those reporting any activity limitations in both years of the survey period. To obtain enough sample size for certain subgroups, we pooled respondents from panel 4 (1999–2000), panel 5 (2000–2001), and panel 6 (2001–2002). We further restricted our sample respondents to those aged 51–64 years because of the recommendation for all clinical preventive services for this age group (US Preventive Services Task Force (USPSTF), 2005) and who were alive at the end of their survey period. Our final study sample included 3,813 individuals (1,718 in panel 4, 1,349 in panel 5, and 2,897 in panel 6).
In the MEPS, respondents were asked about time elapsed since receipt of certain clinical preventive services: within past year, within past 2 years, within last three years, within past five years, more than five years, or never. We used responses to these questions to derive clinical preventive services within recommended timeframe.
Cancer Screening Services included mammography, Papanicolaou (Pap) smear testing and colorectal screening. Based on the USPSTF guidelines, we considered women who received mammography within the last 2 years and Pap testing within the last three years as receiving appropriate preventive care in each of these services. The USPSTF guidelines strongly recommends that clinicians screen for colorectal cancer in all adults 50 years of age or older who are at average risk for colorectal cancer, however, there are several tests and the optimal interval for screening depends on the test. Therefore, as testing may include fecal occult blood testing, sigmoidoscopy, or colonoscopy; we considered women who were ever tested using any method for colorectal cancer as receiving it as recommended preventive care. Women receiving influenza immunization within the past year were considered as having appropriate preventive care because the USPSTF recommends routine yearly vaccination for individuals over 50 years (US Preventive Services Task Force, 2005). We considered cholesterol screening every 5 years as appropriate use of this preventive service based on the experts’ recommendation (National Heart Lung and Blood Institute, 1998).
There are a variety of definitions of disability and no uniform or gold standard definition has been established because of the numerous perspectives on disability (e.g., medical, economic, sociopolitical, and administrative; Altman, 2001; Freedman et al., 2004; McNeil, 1997). The current study uses World Health Organization Model linking persistent limitations to disability (Albrecht, Seelman, & Bury, 2001). In each survey year, MEPS contains information on any limitation (ANYLIM) as having any functional, activity, and/or sensory limitation in any of the pertinent rounds, using the following component variables: whether need help/supervision in instrumental activities of daily living; whether need help/supervision in activities of daily living; whether have difficulty in performing certain specific physical actions; whether have any limitation in work, housework, or school; whether have difficulty seeing (with glasses or contacts, if used); and whether have difficulty hearing (with a hearing aid, if used) (Agency for Healthcare Research and Quality, 2002, 2003a, 2004a, 2005a). In the current study, we used this variable and broadly defined disability as reporting of limitations in both years.
Some individuals only reported limitations in 1 of the survey years (n = 490, 15%); these individuals did not meet our definition of disability and, therefore, were not included in the current study. However, to test the robustness of our findings, we performed sensitivity analyses by including them in the nondisabled population. Findings from those analyses were similar to those reported in the current paper and therefore are not presented here.
Demographic variables included race/ethnicity, age, marital status, and area of residence. Race/ethnicity was characterized as African American, white, Latino, and others. Because the effect of age is likely to be nonlinear, we categorized age into 3 groups: 51–55 years, 56–60 years, and 61–64 years. Marital status was classified as married, widowed, divorced or separated, or never married. Area of residence of the respondent was classified as metropolitan or rural.
Socioeconomic characteristics included education, employment, and poverty level. Education was grouped into 3 categories, namely those with 1) less than high school, 2) high school, or 3) above high school education. Employment status was measured as ever being employed during the survey period (employed or not). Individual income was measured as a percentage of the federal poverty level (FPL): 1) poor, <100% of FPL; 2) near poor, 100%–199% of FPL; 3) middle income, 200%–399% of FPL; or 4) high income, ≥ 400% FPL.
Access to care was measured by health insurance coverage and usual source of health care. The health insurance variable was defined hierarchically as any private insurance, public insurance only, or having no insurance during the 2-year survey period. Usual source of care was based on whether the respondent had a usual source and where they sought care. We categorized the source of care variable as 1) no usual source of care; 2) care by primary care physicians (PCP); and 3) care by others, such as non-PCPs, nurse/nurse practitioners, physician’s assistants, chiropractors.
Lifestyle behavior was measured by the respondent’s body mass index (BMI) during the base year and categorized as 1) under/normal weight (BMI <25); 2) overweight (BMI 25–29.9); or 3) obese (BMI >30). Health status was assessed with variables indicating perceived physical and mental health status and presence of chronic physical conditions such as asthma, cancer, diabetes, heart disease, and hypertension, and any mental illness during the survey period. Finally, indicator variables were created for each panel to adjust for possible time trends.
χ2 tests were used to examine subgroup differences in rates of receiving for each type of clinical preventive services. Separate multiple logistic regressions were used to analyze the association of between disability and the receipt of clinical preventive services and to determine the factors affecting the likelihood of receiving clinical preventive services among the disabled.
All analyses were conducted in SUDAAN version 8 (Research Triangle Institute, 2001) to account for the design effect and longitudinal sampling weights of MEPS (Agency for Healthcare Research and Quality, 2003b, 2004b, 2005b) to reflect the national population.
Of the 3,813 women in the MEPS sample, 835 (23.3%) were disabled. Disabled women were more likely to be African American, older, separated or divorced, and have lower socioeconomic status in terms of education, income level, and health insurance coverage, compared with nondisabled women (data not shown). Twenty-eight percent of disabled women relied on only public insurance for health insurance coverage; 8% were uninsured. Over half of them (54.2%) were unemployed throughout the survey period. The proportion of having PCP as usual source of care was similar between disabled women and others, but an additional 44% disabled women received usual health care from non-PCP health professionals, versus 38% among nondisabled women. Disability was also associated with obesity, worse perceived physical and mental health, and higher rate of chronic diseases such as diabetes, cancer, heart disease, hypertension, asthma, and mental illness.
Table 1 presents the unadjusted rates of clinical preventive services and the adjusted odds ratios (AOR) of receiving of clinical preventive services by disabled women from separate multiple logistic regressions. For each type of clinical preventive services, significant differences were found by disability status. Disability was significantly associated with lower rates of receipt of mammograms (81% vs 87%; AOR, 0.63; 95% confidence interval [CI], 0.44–0.89) and Pap smears (79% vs 88%; AOR, 0.64; 95% CI, 0.48–0.85). However, disabled women were more likely to receive colorectal screening (41% vs 31%; AOR, 1.37; 95% CI, 1.08–1.73) and influenza immunization (50% versus 39%; AOR, 1.54; 95% CI, 1.16–2.04). No significant association was found between disability status and cholesterol screening.
Among disabled women, for each type, we found significant demographic and socioeconomic differences in receipt of clinical preventive services (Table 2). Compared with those with private or public insurance, those without health insurance had the lowest rates across all types of clinical preventive services: mammogram (50% versus 73% and 81%); Pap smear (59% versus 72% and 81%); colorectal screening (17% versus 29% and 49%); influenza immunization (26% versus 54% and 52%); and cholesterol screening (71% versus 92% and 95%). Similarly, the rates of clinical preventive services were the lowest among those without a usual source of care than others. However, the group differences were not statistically significant for colorectal screening or influenza immunization.
These findings persisted when controlling for individual sociodemographic characteristics, access to care and health factors (Table 3). Multiple logistic regressions on each type revealed that disabled women with insurance are more likely to receive each type of clinical preventive services compared to those without any health insurance throughout the study period. For example, the AOR for those with public insurance only ranged from 1.94 for Pap smear to as high as 4.47 for cholesterol screening. AORs for private insurance ranged from 2.71 for influenza immunization to 4.83 for cholesterol screening. Disabled women with a usual source of care (PCP or non-PCP), in general, were 4 times more likely than those without usual source of care to receive mammograms, Pap smears, and cholesterol screenings.
Even after controlling for other factors, racial minorities were still less likely to receive some of the clinical preventive services. African Americans were half as likely as whites to receive influenza immunization (AOR, 0.49; 95% CI, 0.30–0.81 and 62% less likely to receive cholesterol screenings (AOR, 0.28; 95% CI, 0.11–0.67). However, this was not the case with some of the cancer screening services. For example, Latina women were more than twice more likely than whites to receive mammogram (AOR, 2.64; 95% CI, 1.32–5.27) and Pap smear (AOR, 4.56; 95% CI, 1.86–11.18).
Rates of clinical preventive services found in this study are in the range reported in the published literature for both the overall population (Nelson, Bland, et al., 2002) and those with disabilities (Diab & Johnston, 2004). Our findings confirmed from a national perspective that disability had a significant negative effect on receiving mammograms and Pap smears (Ramirez et al., 2005), but a positive effect on colorectal screening and influenza immunization (Department of Health, New York State, 2002). A plausible reason for low rates of Pap smear, as suggested by Nosek and Howland (1997), could be that clinicians may assume that the severity of the woman’s disability may limit her sexual activity and may not provide Pap smears because they view these disabled women as being at low risk for cervical cancer. The lower rates of mammography and Pap smear among the disabled may also result from the difficulties of the actual testing/screening process for the disabled women, especially for those with mobility limitations; mammogram requires that the patient stand and the Pap smear require the patient be on an examination table. Although we could not identify mobility limitations as the cause of disability separately, it has also been found that individuals with mobility problems were as likely as others to receive pneumonia and influenza immunizations, but less likely to receive mammogram and Pap smear (Iezzoni et al., 2000). People with disabilities, especially intellectual disability, may experience more fear and anxiety about the cancer screening than the general population (Sullivan, Slack-Smith, & Hussain, 2004). Also like older people, people with disability have relatively shorter life expectancy and cancer screening may not be beneficial to them (Balducci, 2005).
Contrary to the previous study in California that found no difference in receipt of colonoscopy by disability status (Ramirez et al., 2005), in our study women with disability were found to be more likely to receive colorectal screening, as in another study from New York state (Department of Health, New York State, 2002). It has been found that in patients ≥50 years, asymptomatic screening (average-risk screening colonoscopy, positive family history, or fecal occult blood test positivity) accounted only for 38.1% of all colonoscopies (Lieberman, Holub, Eisen, Kraemer, & Morris, 2005). Therefore, higher rates of colorectal screening found in women with disability may be related to diagnostic purposes rather than for preventive screening.
Additionally, we found that having a usual source of care increased the likelihood of receiving all types of clinical preventive services, which was also consistent with findings from studies in the general population (Corbie-Smith, Flagg, Doyle, & O’Brien, 2002; Ettner, 1996; Mandelblatt et al., 1999; Selvin & Brett, 2003). Thus, our findings document the crucial role of having a usual source of care in promoting receipt of clinical preventive services because 96% of individuals go to their usual providers for preventive care (Fryer, Dovey, & Green, 2000).
Considered together, we observed >7% of the disabled women either did not have a usual source of care or were uninsured (data not shown). It has been suggested that insured adults with a usual source of care are most likely to receive preventive care and uninsured adults without regular care were least likely to have received such services (DeVoe, Fryer, Phillips, & Green, 2003). Our findings suggest that innovative strategies may be needed to target women who have no access to health care either in terms of health insurance or usual source of health care.
Although having a disability was not a barrier to annual influenza immunization or cholesterol screening, we found that among women with disabilities, African American women were less likely than whites to receive influenza immunization and cholesterol screenings as recommended. There is overwhelming evidence of racial and ethnic disparities in influenza vaccination (Centers for Disease Control and Prevention, 2003; Sambamoorthi & Findley, 2005) and cholesterol screening (Brown, Giles, Greenlund, & Croft, 2001; Centers for Disease Control and Prevention, 2005; Nelson, Norris, & Mangione, 2002). Our findings point to the need for promoting cholesterol screening among African American women with disability. Eliminating these racial disparities requires a clear understanding of why these disparities occur. For example, some of the reasons for lower rates of cholesterol screening among African Americans could be lack of knowledge about cholesterol (Thomas, Lackland, & Taylor, 2000), poor patient–physician communications that affect health service use (Ashton et al., 2003), or lack of affordability of treatment if diagnosed with the conditions (Reed, Hargraves, & Cassil, 2003). In the case of influenza immunization, in 1 study, disparities in care were not explained by commonly used access factors (e.g., family income, type of health insurance, usual source of care; Fiscella, Franks, Doescher, & Saver, 2002). In other studies, racial disparities in immunization were related to differences in attitudes in terms of resistance to immunization (Hebert, Frick, Kane, & McBean, 2005). One could speculate that other reasons for such differences may be due to patient’s lack of awareness about the need (Jones, Ingram, Craig, & Schaffner, 2004), health literacy (Scott, Gazmararian, Williams, & Baker, 2002), patient’s beliefs (Cornford & Morgan, 1999), or fear of undisclosed contents of the vaccination (Armstrong, Berlin, Schwartz, Propert, & Ubel, 2001).
Our findings highlight the need for further research on the causes of racial disparities in preventive care among women with disability. However, existing research gives us some directions. For example, a meta-analysis of effectiveness of interventions to increase influenza immunization suggests that (Stone et al., 2002) organizational changes in staffing and clinical procedures and self-management through patient financial incentives and reminders are most effective, and that a combination of interventions tends to further increase the benefits. Therefore, a combination of various interventions may be needed to improve influenza vaccination and cholesterol screening will be needed among African American women.
Some limitations of our study should be noted. We used self-reports for measuring clinical preventive services, which may be subject to recall bias. In recent years, studies have assessed sensitivity and specificity of patient self-report of influenza immunization (Mac Donald, Baken, Nelson, & Nichol, 1999; Martin, Leff, Calonge, Garrett, & Nelson, 2000; Zimmerman, Raymund, Janosky, Nowalk, & Fine, 2003). A comparison of self-reported measures with medical record data showed respondents with diabetes may be more likely to overestimate annual influenza immunization (Harwell et al., 2001). However, other studies conclude self-reports are highly sensitive and moderately specific for influenza vaccination (Zimmerman et al., 2003). Similarly for mammograms and Pap smears, studies generally state self-report data for these screenings are valid for use for population-based studies, but caution should be used for clinical studies where precision is required (Zapka et al., 1996). Although self-report of mammography use was consistently higher than medical record documentation of use (Tumiel-Berhalter, Finney, & Jaen, 2004), specificity or negative predictive value of recall of mammography in the previous year has been reported at 91% (McGovern, Lurie, Margolis, & Slater, 1998). For Pap smears, Tumiel-Berhalter and colleagues (2004) found 90.8% agreement of self-report and chart review for recall within the past 3 years. Similarly, self-report of colon cancer screening behavior have been shown to be reliable (Baier et al., 2000). In addition, MEPS does not distinguish between screening and diagnostic procedures of cancer tests. Thus, actual rates of cancer screening might be lower than those reported, especially in the case of colorectal screening (Lieberman et al., 2005).
In summary, our study extends the previous research on clinical preventive services among women by examining both the impact of disability and subgroup differences among those with disability, by using a nationally representative data, and by using a longitudinal and parsimonious definition of disability (Verbrugge, Merrill, & Liu, 1999). Our study findings suggest that in a nationally representative household sample, disability is still a barrier to certain clinical preventive services despite extensive controls for demographic factors, socioeconomic status, and access to care. These findings imply that a key issue for improving women’s health care is to identify those who are at risk for specific measures of preventive care and also recognize subgroup disparities in care. Opportunities exist to improve clinical preventive services and the findings from the current study will be helpful in targeting interventions toward specific groups of women for specific measures of preventive care to receive these important services.
The findings and opinions reported here are those of the authors and do not necessarily represent the views of any other individuals or organizations. This work was partially supported by Dr. Findley’s K23 Award (HD40779) under the National Institute of Child Health and Human Development.
Wenhui Wei, PhD, is an Associate in the Institute for Health, Health Care Policy and Aging Research at Rutgers, the State University of New Jersey. He is also working full-time as a health outcomes manager at Sanofi-Aventis. His current research focuses on diabetes care, physical disability, and health outcomes.
Patricia A. Findley, DrPH, MSW, LCSW, is an Assistant Research Professor in the School of Social Work at Rutgers, the State University of New Jersey. She is also a Health Science Specialist with the Veterans Administration Health Care System in East Orange, New Jersey. Her current research focuses on physical disability, chronic illness, functional outcomes, cancer survivorship, and women’s health issues.
Dr. Usha Sambamoorthi, PhD, is an Adjunct Associate Professor in the Division of Health Systems and Policy, School of Public Health, UMDNJ, New Jersey. She is also the director of Health Outcomes Research, Center for Health Care Knowledge and Management at VANJHCS, New Jersey. Her current research focuses on preventive care, health outcomes, the interaction between mental and chronic illness care and women’s health issues.