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Disparities in patient-physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS)
Disability and Health Journal 2 (2009) 206e215 www.disabilityandhealthjnl.com
Disparities in patient-physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS) Diane L. Smith, Ph.D., OTR/L Department of Occupational Therapy and Occupational Science, University of Missouri, Columbia, MO 65211, USA
Abstract Background: Ineffective patient-physician communication has been shown to result in poorer health outcomes for various vulnerable populations. However, little research has been done on patient-physician communication issues as perceived by persons with disabilities. The purposes of this study are to determine if there is a relationship between disability and patient-physician communication and how disability affects the likelihood of effective patient-physician communication. The research questions for this study are: (1) Is there a significant difference in patient-physician communication for persons with disabilities compared to persons without disabilities? (2) Does having a disability influence the likelihood of ineffective patient-physician communication? Methods: Data were obtained from the 2006 Medical Expenditure Panel Survey (MEPS). Chi-square analyses were performed to determine if there a significant difference in patient-physician communication for persons with disabilities compared with persons without disabilities. A series of logistic regression analyses were conducted examining the likelihood of ineffective patient-physician communication with the independent variable of disability status. Results: Those with a disability are significantly more likely than persons without a disability to perceive that the physician does not listen to them, does not explain treatment so that they understand, does not treat them with respect, does not spend enough time with them, and does not involve them in treatment decisions. Regression analyses further revealed that persons with a disability are from 1.36 to 1.78 times as likely to perceive inadequate patient-physician communication. Conclusions: This study revealed that persons with disabilities are at increased risk of experiencing ineffective patient-physician communication, compromising current health status and increasing the possibility of secondary health conditions. Several suggestions were made with regard to incorporation of ‘‘disability literacy’’ mechanisms such as physician training, health facility environmental assessment, and use of technologies such as telehealth and e-health. Further research in partnership with the disability community is needed to determine the effectiveness of these methods in improving patient-physician communication. Ó 2009 Elsevier Inc. All rights reserved. Keywords: Communication; Disability literacy; health care access
Inadequate communication between patients and physicians has been associated with lower rates of access to health care [1e9]. One study found that communication barriers ranked among the top three obstacles preventing minorities and the poor from receiving necessary [health] care [10]. Communication barriers can also result in diminished patient comprehension of medical information, ultimately affecting the quality of health care received bypatients [11e23]. These barriers may reduce a patient’s abilities to follow physician instructions, adhere to
Financial disclosure: The authors have no conflicts of interest to declare. Corresponding author: 423 Lewis Hall. Fax: (573) 884-2610. E-mail address: [email protected] 1936-6574/09/$ e see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.dhjo.2009.06.002
treatments, or comply with instructions for follow-up care and may compromise the quality of care due to misdiagnosis, increasing costs, and inefficiencies in the health care system as a result of unnecessary testing caused by the lack of a proper medical history [13,22,24e27]. All of these factors can contribute to lower patient satisfaction [28e30]. Despite this concern, one study showed that physicians almost never (only 2% of the time) assess the patient’s understanding of the physician’s instructions [31]. The unique cultural, language, and communication barriers to effective patient-physician communication faced by persons with disabilities are beginning to be considered. The purposes of this study are to determine the relationship of disability and patient-physician communication and how disability affects the likelihood of effective patient-physician communication.
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Persons With a Disability and Patient-Physician Communication Most literature on patient-physician communication for persons with a disability has been imbedded under the broader issues of access and satisfaction with health care. Studies have shown that persons with disabilities were found to be ‘‘less likely to receive timely and appropriate medical treatment for their chronic services.which translates into higher mortality rates, complications, and health care costs’’ [32]. Specifically, Smith [33] found that persons with a disability were 2.26 to 3.78 times more likely not to have access to health care as were persons without a disability. Previous studies have identified various barriers preventing access to health care for persons with physical disabilities [34,35]. Scheer and colleagues [36] ]identified three broad categories of barriers: environmental, structural, and process. Specifically related to communication, included under environmental barriers is the failure of many health care professionals to provide patients with alternative methods of communication, such as large print or Braille materials and sign language interpreters [37]. Drainoni et al. [38], defining these barriers as structural, found that many individuals with speech or hearing disabilities described communication problems when they attempted to contact physicians’ offices by telephone. Deaf individuals cited lack of TTY machines or staff properly trained to use them in health care settings. Deaf individuals also cited difficulty obtaining American Sign Language (ASL) interpreters for medical visits on short notice and gaps in understanding caused by physician attempts at written communication. Furthermore, physicians were sometimes unwilling to write out their findings or, if they did, used medical terminology that the patients did not understand. Process barriers involve the delivery of service [36]. Lack of physician knowledge and lack of timeliness of service are issues frequently reported by patients. Hanson et al. [39] found that one in four persons with a disability who was studied indicated difficulty finding a physician who was knowledgeable regarding the implications of their disability. Drainoni et al. [38] identified personal and cultural barriers including misconceptions about people with disabilities, insensitivity and lack of respect, failure to take patients and their caregivers seriously, reluctance or unwillingness to care for persons with disabilities, and cultural gaps between patient and physician. These cultural gaps between the patient and physician may occur because of lack of recognition and knowledge of the physician to disability culture, which may occur as early as medical school training. When examining how medical students are taught to communicate with patients who have sensory or physical disabilities, medical students admitted that they knew little about the effects of sensory and physical impairments on daily life [40]. Additionally, during training, students often witnessed residents taking short cuts when caring for persons with disabilities such as not transferring them from the wheelchair to the examination
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table for evaluation and treatment and writing notes to deaf persons rather than using an ASL interpreter. With regard to persons with major mental illness, Iezzoni et al. [41] found that medical student observations resulted in four themes: fears and anxieties about interacting with persons with major mental illness; residents ‘‘protecting’’ students from patients with major mental illness; lack of clinical maturity; and barriers to learning during psychiatry rounds. Students commented that their preferred way of learning about all persons with disabilities was through actual patient contact. When practicing physicians were surveyed, almost half stated that they had no training related to service for persons with disabilities [42]. They also commented that they were more likely to provide services to patients with chronic illnesses or mobility, cognitive, or psychiatric impairments than they are to serve individuals with communication limitations or visual impairments.
Disability Culture and Language To improve patient-physician communication, the physician must consider the culture of the patient, including disability culture. Gill [43,44] defined disability culture as including shared, long-standing social oppression; art; humor; history; evolving language and symbols; unified worldview; beliefs and values; and strategies for surviving and thriving. Core values include (1) an acceptance of human differences, (2) a matter-of-fact orientation toward helping, (3) a tolerance for lack of resolution, (4) disability humor, and (5) a sophisticated future orientation. Many researchers have documented the existence of a disability culture, its functions, its ‘‘core values,’’ and its similarities to and differences from other cultural groups [43,45]. Disability culture extends beyond diagnoses and embraces all persons who have been marginalized by society simply because they are viewed as defective, not valid (invalid), or somehow in need of pity. Even people with invisible disabilities such as chronic health conditions or mental illness experience this marginalization [46]. Knowledge and training in cultural competency for health care providers have mostly focused on issues related to race and ethnicity, leaving out issues relevant to the disability community. However, as with all cultures, lack of adequate patient-physician communication, knowledge, and recognition of the existence of disability culture may prevent health care providers from considering health care issues that are relevant and important to this community. The majority of these studies examining issues of patient-physician communication with regard to persons with disabilities have come from focus groups and small samples [38,47]. Therefore, the purpose of this study is to use data provided by the 2006 Medical Expenditure Panel Study (MEPS), a large national dataset, to determine the relationship of disability and patient-physician communication as well as how disability status affects the receipt of
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appropriate patient-physician communication. MEPS data have been used to examine issues of access to health care [48e51] but not specifically with regard to patient-physician communication. Therefore, the research questions for this study are: (1) Is there a significant difference in patient-physician communication for persons with disabilities compared to persons without disabilities? (2) Does having a disability influence the likelihood of ineffective patient-physician communication? The hypotheses are as follows: (1) There is a significant relationship between having a disability and patient-physician communication. (2) Having a disability increases the likelihood of ineffective patient-physician communication.
Methods Instrument To answer the research questions, data were obtained from the 2006 MEPS, a nationwide survey of families and individuals, health care providers, and employers. MEPS collects data on the specific health services including frequency of use, the cost, and payment mechanisms and health insurance. MEPS has two major components: the Household Component and the Insurance Component. The Household Component, used in this study provides data from a sample of individuals and households, supplemented by data from their medical providers in selected communities drawn from a nationally representative sample. Data include demographic characteristics, health conditions, health status, use of medical services, charges and source of payments, access to care, satisfaction with care, health insurance coverage, income, and employment [52]. MEPS data have been used to support a highly visible set of descriptive and behavioral analyses of the U.S. health care system, including studies of the population’s access to, use of, and expenditures and sources of payment for health care; the availability and costs of private health insurance coverage and those without health care coverage; and the role of health status in health care use, expenditures and household decision making, and in health insurance and employment choices [48]. MEPS data have also been used in several studies regarding health care services and persons with disabilities. For example, MEPS data have been used to examine the receipt of clinical preventative services among women [49], factors associated with disabilityrelated differences in breast cancer screening [50], and health services use and health care expenditures for children with disabilities [51]. Variables The dependent variable for the chi-square analyses was ‘‘disability,’’ which was determined by the response to ‘‘Do you have any limitation in work, housework, or school activities [yes, no]?’’ In previous studies [49e51], the
definition of disability included limitations in activities of daily living (ADLs), instrumental activities of daily living (IADLs), and age-appropriate social roles such as play. The definition of disability used in this study is appropriate as limitation in work, housework, or school activities is inclusive of IADLs and age-appropriate social roles. This definition of disability is also similar to the definition put forth by the Americans with Disabilities Act (ADA) of ‘‘having a physical or mental impairment that substantially limits one or more major life activities’’ [53]. Independent variables for the chi-square analyses and dependent variables for the logistic regression analyses that defined ‘‘patient-physician communication’’ include responses to all of the following questions, ‘‘If there were a choice between treatments, how often would the medical provider ask you to help make the decision [usually to always, sometimes to never]?’’ ‘‘Does the physician listen to your medical concerns [usually to always, sometimes to never]?’’ ‘‘Does the physician explain the treatment so that you understand [usually to always, sometimes to never]?’’ ‘‘Does the physician treat you with respect [usually to always, sometimes to never]?’’ ‘‘Does the physician spend enough time with you [usually to always, sometimes to never]?’’ Demographic variables include race [white, other race]; gender [male, female]; education [no school to grade 8, some high school, high school graduate/GED; some college/college graduate]; income [$0 to $14,999, $15,000 to $24,999, $25,000 to $34,999, $35,000 to $49,999, $50,000 and up]; age [18 to 34, 35 to 44, 45 to 54, 55 to 64 years]; marital status [coupled, uncoupled], insurance status [yes, no], and perceived health status [good to excellent, fair to poor]. Analysis Chi-square analyses were performed to determine if there a significant difference in patient-physician communication for persons with disabilities compared with persons without disabilities. The chi-square test is a statistical measurement used to examine similarities and differences in categorical variables. To examine the relationships more fully, a series of logistic regression analyses were conducted examining the likelihood of ineffective patient-physician communication using the variables of the physician not listening to the patient, not explaining treatment so that the patient understands, not treating the patient with respect, not spending enough time with the patient, and not involving the patient in treatment decisions and access variables of inability to receive medical care when needed and inability to get needed medication, with the independent variable of disability status and confounding factors of gender, age, marital status, race, income, employment, educational status, and insurance. The coefficients for this model are expressed as odds ratios (ORs); 95% confidence intervals (CIs) are reported to indicate the precision of these estimates. All analyses were conducted using the Statistical Package for the Social Sciences (SPSS),
D.L. Smith / Disability and Health Journal 2 (2009) 206e215
version 16. This research was approved by the institutional research board.
Table 1 Demographics of Population Variable
Results Of those surveyed (30,999) in 2006, 2591 persons stated that they have a disability (8.4%). Those persons with a disability tended to be significantly older, female, uncoupled, less educated, more likely to be unemployed, and in poorer health and to have a lower income compared with persons without a disability (Table 1). Similar to other studies, persons with disabilities were more likely to have insurance than were persons without a disability. These demographic differences are important to consider when comparing persons with a disability to persons without a disability on patient-physician communication issues. Because of this, the decision to perform regression analysis was made to determine the influence of not only disability status but also these demographic variables. Relationship Between Disability Status and PatientPhysician Communication Results from the chi-square analysis (Table 2) showed that persons with a disability were more likely than persons without a disability to perceive that the physician did not listen to what they had to say (12.7% versus 9.8%, p ! .01); did not explain treatment so that they understood (13.2% versus 9.1%, p ! .01); did not treat them with respect (12.1% versus 8.2%, p ! .01); did not spend enough time with them (17.7% versus 14.3%, p ! .01); did not involve them in treatment decisions (21.8% versus 17.4%, p ! .01); and did not explain options for treatment (7.2% versus 5.6%, p ! .01). Relationship of Variables to Likelihood of Inadequate Patient-Physician Communication Results from a series of regression analyses (Tables 3 through 8) show that having a disability increases the likelihood of ineffective communication in all measured patientphysician communication. Not having insurance often increased the likelihood of ineffective patient-physician communication as much and sometimes more than having a disability. In addition, being female, uncoupled, and older (especially over 55 years of age) and having more education and having a higher income also reduced the likelihood of ineffective communication for all measured patientphysician communication. Persons with a disability are 1.57 times as likely as persons without a disability to perceive that the physician is not listening to them (Table 3); 1.46 times as likely as persons without a disability to perceive that the physician is not explaining treatment in an understandable manner (Table 4); 1.78 times as likely as persons without a disability to perceive that the physician does not treat them with
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Gender* Male Female Age (yr)* 18e34 35e44 45e54 55e64 Race* White Black Other race Hispanic* Yes No Education* No school to grade 8 Some high school High school graduate/GED Some college/college graduate Income* $0e$14,999 $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Marital status* Coupled Uncoupled Insurance* Yes No Health status* Good to excellent Fair to poor
Persons With a Disability
Persons Without a Disability
43.1% (651) 56.9% (861)
47.1% (8623) 52.9% (9675)
13.4% 17.7% 33.4% 35.5%
39.4% 23.3% 22.2% 15.1%
(203) (267) (505) (537)
(7204) (4270) (4056) (2769)
70.8% (1070) 23.6% (357) 5.6% (85)
76.4% (13,975) 16.6% (3036) 7.0% (1287)
14.7% (223) 85.3% (1289)
26.8% (4909) 73.2% (73.2%)
11.8% 23.4% 37.0% 27.9%
(176) (349) (552) (416)
8.4% 16.4% 30.7% 44.5%
(1528) (2961) (5557) (8055)
70.2% 15.4% 6.0% 4.6% 3.8%
(1060) (232) (90) (69) (58)
36.9% 17.5% 13.5% 13.4% 18.6%
(6742) (3207) (2464) (2455) (3407)
40.6% (614) 59.4% (898)
55.4% (10,140) 44.6% (8151)
80.0% (1210) 20.0% (302)
69.6% (12,739) 30.4% (5559)
33.5% (506) 66.5% (1006)
90.9% (16,588) 9.1% (1670)
* p ! .01.
respect (Table 5); 1.46 times as likely as persons without a disability to perceive that the physician does not spend enough time with them (Table 6); 1.41 times as likely to perceive that the physician does not explain treatment options (Table 7); and 1.36 times more likely than persons without a disability to perceive that the physician does not involve them in treatment decisions (Table 8). Those without insurance are 1.54 times more likely than those with insurance to perceive that the physician is not listening to them; 1.54 times as likely as those with insurance to perceive that the physician has not explained treatment in an understandable manner; 1.63 times as likely as persons who do have insurance to perceive that the physician does not treat them with respect; 1.38 times as likely as those who have insurance to perceive that the physician does not spend enough time with them; and 1.32 times as likely as those who have insurance to perceive that the physician does not explain treatment options. Insurance status does not appear to affect perceptions of the likelihood of the physician involving them in treatment decisions.
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Table 2 Relationship of Disability and PatienteProvider Communication Variable Physician listens to what patient has to say* Sometimes to never Usually to always Physician explains treatment so that patient understands* Sometimes to never Usually to always Physician treats patient with respect* Sometimes to never Usually to always Physician spends enough time with patient* Sometime to never Usually to always Physician involves client in treatment decisions* Sometimes to never Usually to always Physician explains options for treatment* Yes No
Person With a Disability
15.8% (187) 84.2% (996)
Person Without a Disability
10.5% (1023) 89.5% (8683)
14.8% (175) 85.2% (1010)
9.5% (927) 90.5% (8808)
15.3% (181) 84.7% (1002)
8.8% (855) 91.2% (8897)
20.9% (247) 79.1% (936)
15.5% (1511) 84.5% (8241)
23.4% (292) 76.6% (958)
92.1% (1195) 7.9% (102)
17.1% (1914) 82.9% (9279)
94.6% (11,202) 5.4% (635)
* p ! .01.
Race and ethnicity do not seem to affect how patients perceive whether their physician is listening to them. Those who are a race other than white and those who are Hispanic are 1.32 and 1.36 times, respectively, more likely than those who are white to perceive that the physician is not explaining treatment in an understandable manner; 1.08 and 1.13 times, respectively, as likely as those who are white to perceive that the physician does not treat them with respect; 1.18 times and 0.97 times (respectively) as likely as persons who are white to perceive that the physician does not spend enough time with them; 0.91 and 1.14 times, respectively, as likely to perceive that the physician does not explain treatment options; and 1.42 and 1.05 times, respectively, more likely than those who are white to perceive that the physician does not involve them in treatment decisions.
Discussion There is a significant relationship between having a disability and all aspects of patient-physician communications assessed in this study. These results are consistent with other findings [38], but this study provides additional information through the use of a large national dataset as to the extent of how disability affects the likelihood of experiencing ineffective patient-physician communication. In addition to disparities faced by persons with disabilities, those persons who are not white, who are male, and who are youngeralso perceive poorer patient-provider communication. In addition, those without insurance face disparities similar to those
Table 3 Relationship of Variables to Likelihood of Physician Not Listening to the [EQ2]Patient Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.57
1.30e1.90
1.00 0.92
0.81e1.04
1.00 0.95 0.90 0.67
0.80e1.13 0.76e1.07 0.55e0.81
1.00 1.03
0.89e1.19
1.00 1.02
0.86e1.21
1.00 0.90 0.83 0.81
0.69e1.17 0.65e1.07 0.63e1.04
1.00 1.13 1.05 0.85 0.64
0.95e1.34 0.86e1.28 0.69e1.06 0.51e0.79
1.00 1.54
1.33e1.78
1.00 0.97
0.87e1.13
with disabilities. Therefore, it is important when designing interventions to improve patient-provider communication for persons with disabilities that consideration be made of other factors such as race/ethnicity, age, gender, and insurance status. As with all interventions and advocacy strategies, no one size fits all. Results of this study are important as ineffective patientphysician communication has been shown to prevent persons from receiving needed care [10e24]. The results of this study show that a disparity exists in patient-physician communication for those with a disability compared with those without a disability; however, it does not provide an explanation for the disparity. One explanation incorporates discrimination as a potential contributor to health care disparities. Discrimination against persons with disabilities can originate from prejudices or from misperceptions held by nonprejudiced persons, a form of discrimination known as ‘‘statistical discrimination’’ [54e56]. Johnson further states that relatively little is known concerning the effects of discrimination on access to quality health care for people with disabilities [54]. Johnson argues that even when
D.L. Smith / Disability and Health Journal 2 (2009) 206e215 Table 4 Relationship of Variables to Likelihood of Physician Not Explaining Treatment So That Patient Understands Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.46
1.20e1.78
1.00 0.86
0.75e0.98
1.00 0.90 0.91 0.81
0.75e1.07 0.76e1.09 0.67e0.98
1.00 1.32
1.14e1.54
1.00 1.36
1.15e1.62
1.00 0.91 0.84 0.63
0.70e1.17 0.66e1.07 0.49e0.82
1.00 0.96 1.12 0.71 0.55
0.80e1.15 0.91e1.37 0.56e0.90 0.44e0.71
1.00 1.54
1.33e1.79
1.00 1.05
0.92e1.20
a person with a disability experiences discrimination in one context, it does not necessarily imply that every negative experience in health care is an expression of discrimination and could lead to interventions that aim the wrong targets. Another explanation focuses on issues of cultural competency. Typically, health care disparity, cultural competency, and communication issues have focused on race and ethnicity. However, as this research shows, a similar focus needs to be placed on issues for persons with disabilities. To complicate matters, issues concerning people with disabilities demonstrate the enormous diversity within the population of people with disabilities in terms of varying etiologies, underlying health conditions, degrees of activity limitation, ages of onset, natural histories, longevity, gender, ethnicity, and socioeconomic status. One suggestion by DeJong et al. [57] is promotion of ‘‘disability literacy’’ and ‘‘disability competence’’ among physicians and other health care providers and staff, including mandatory training and professional development requirements. Disability literacy means that the provider is knowledgeable about accessibility and the health care needs of individuals
211
Table 5 Relationship of Variables to Likelihood of Physician Not Treating the Patient With Respect Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.78
1.38e2.04
1.00 0.87
0.75e0.98
1.00 0.92 0.86 0.78
0.76e1.10 0.70e1.02 0.62e0.93
1.00 1.08
0.92e1.26
1.00 1.13
1.01e1.44
1.00 1.12 1.03 0.95
0.83e1.46 0.76e1.30 0.67e1.17
1.00 1.08 0.98 0.78 0.62
0.88e1.27 0.74e1.13 0.56e0.89 0.44e0.71
1.00 1.63
1.40e1.91
1.00 1.01
0.88e1.17
with disabilities. This concept is still in its infancy, and additional research with input from the disability community is needed to define disability literacy in the health care environment and to identify concerns in health care that lead to disability illiteracy [57]. Health care providers also must begin to recognize and learn about disability culture and its importance in health care. Many health care providers lack sufficient training to provide care for people with disabling conditions who have both general, preventative health care needs as well as needs that are specific to their disabling condition [58,59]. Another explanation for the disparity in patient-physician communication is the influence of increasingly competitive managed care environment [47]. For example, managed care may be reducing the length of appointments between physicians and patients. In addition, the administrative burden placed on physicians who practice in managed care settings may take up significant amounts of time that physicians might otherwise spend communicating with their patients. Financial pressures imposed by some managed care plans may also force physicians to see more
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Table 6 Relationship of Variables to Likelihood of Physician Not Spending Enough Time With the Patient
Table 7 Relationship of Variables to Likelihood of Physician Not Explaining Treatment Options
Variable
Variable
Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.46
1.19e1.66
1.00 0.97
0.86e1.06
1.00 0.82 0.75 0.63
0.70e0.94 0.64e0.86 0.52e0.73
1.00 1.18
1.05e1.34
1.00 0.97
0.88e1.18
1.00 0.96 0.98 0.97
0.75e1.20 0.76e1.20 0.74e1.17
1.00 1.00 0.99 0.76 0.70
0.84e1.14 0.80e1.13 0.59e0.86 0.55e0.78
1.00 1.38
1.21e1.57
1.00 0.97
0.87e1.08
patients in a shorter amount of time, thus curtailing the development of positive patient-physician communication. These time constraints may be especially harmful to patients with disabling conditions who may need additional time to discuss disability-related concerns as well as the general healthcare concerns and preventive service needs that all adults have.
Interventions Studies have shown that improved physician-patient communication can begin and is sought as early as medical school training [40,41]. Training with actual patients with physical, sensory, and mental health disabilities may assist with improving future physician knowledge of specific issues experienced by persons with various disabilities. This improved knowledge may then result in improved patient-provider communication. Hwang et al. [60] stress the importance of providing a consumer-driven approach to health care (distinct from facility-directed health care) as a more effectual, cost-effective and subjectively
Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.41
1.07e1.74
1.00 1.05
0.89e1.22
1.00 1.23 1.21 0.97
0.99e1.53 0.97e1.50 0.75e1.22
1.00 0.91
0.75e1.10
1.00 1.14
0.96e1.45
1.00 0.84 0.88 0.89
0.60e1.14 0.64e1.17 0.63e1.17
1.00 0.77 0.86 0.88 0.86
0.60e0.96 0.64e1.07 0.64e1.08 0.63e1.03
1.00 1.32
1.10e1.59
1.00 1.22
1.04e1.43
satisfying method of improving patient care for persons with disabilities. Eddy and Robey further suggest that to competently care for persons with disabilities, the physician must be willing and able to explore means of communicating with persons who might be fully nonverbal or have other verbal communication impairments [61]. They also suggest that to successfully achieve this, physicians need a basic familiarity with an array of assistive and augmentative communication devices commonly used by patients who are nonverbal. In addition, physicians must be aware that inability to speak does not necessarily reflect a cognitive deficit. However, for patients who do have a cognitive deficit, cultural competence may mean adjusting the complexity of speech to be understandable and not in an infantilizing manner. Finally, ignoring the individual as a potential key source of clinical information and consequently foreclosing his or her role as a partner in the care process is another example of cultural incompetence and of failing to fulfill basic obligations of autonomy for all patients with and without disabilities.
D.L. Smith / Disability and Health Journal 2 (2009) 206e215 Table 8 Relationship of Variables to Likelihood of Physician Not Involving Patient in Treatment Decisions Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.36
1.16e1.58
1.00 0.94
0.85e1.03
1.00 1.17 1.13 0.88
1.03e1.34 0.99e1.29 0.76e1.02
1.00 1.42
1.27e1.58
1.00 1.05
0.92e1.20
1.00 0.92 0.82 0.80
0.75e1.14 0.67e0.99 0.65e0.97
1.00 0.93 0.86 0.97 0.87
0.81e1.07 0.73e1.01 0.82e1.13 0.74e1.01
1.00 1.01
0.90e1.02
1.00 1.18
1.06e1.31
213
provide outreach to persons with disabilities who are unable to access physicians due to transportation or geographic limitations [63,64]. Strengths and Limitations
A potential method to address ‘‘disability literacy’’ is to incorporate methods used for health literacy in general. For example, the health literacy environmental evaluation developed by Rudd and Anderson [62] could be adapted for persons with a disability using feedback from people with disabilities. This evaluation assesses the health literacy of health care facilities and includes subsections of navigation, print communication, oral exchange, technology, and policies and procedures. This evaluation could be adapted to assess the availability of TTY, signage in large lettering or Braille, availability of Deaf interpreters and/or staff trained in ASL, medical forms and educational materials in alternative formats, disability-accessible computers,and training for medical and support staff in disability cultural issues. Established health literacy techniques such as training professional and support staff in the use of plain language and teach-back would also need to be incorporated within these types of communication. Finally, the use of technologies such as Internet coaching, telehealth, and telerehabilitation with alternative forms of communication such as close-captioning and ASL could be used to
The strengths of this study are that it incorporates responses from a large national database that has been used in other studies that examine various aspects of access to health care. Questions specifically about patient-physician communication were available as was demographic information necessary in the analyses. Weaknesses in the study included the definition of disability, which included persons with limitations in any work, housework, or school activities. This definition of disability is broader than more impairment-based definitions but is more in line with the ADA definitions of disability. However, there are persons who have these limitations who would not consider themselves ‘‘disabled’’ and there are those who have disabilities who are not limited in these areas. Therefore, the definition is not perfect. Another weakness is that persons with disabilities were only asked these questions about physicians and not about other health care providers. Sampling for the survey may be biased to those wishing to participate in the survey. Also, this survey is only conducted for noninstitutionalized adults, which does not include residential facilities, nursing homes, or prisons. There is a great need to consider the risk factors for persons with disabilities with regard to patient-provider communication both in communities and institutions. It is possible that reducing these risks in both settings will likely take very diverse and disparate strategies. The purpose of this study was to examine patient-physician for persons with disabilities in the community. Examination of patient-physician communication of persons with disabilities in institutional settings requires further study. Another limitation is that the definition of patient-physician communication was limited to those questions provided from the survey and therefore does not represent all aspects of this communication.
Conclusions Lack of appropriate patient-physician communication has been shown to result in increased health and health care disparities, especially for vulnerable populations. This study revealed that persons with disabilities are at increased risk of experiencing ineffective patient-physician communication, potentially compromising current health status and increasing the possibility of secondary health conditions. Several suggestions were made with regard to incorporation of ‘‘disability literacy’’ mechanisms such as provider training, health facility environmental assessment, and use of technologies such as telehealth and e-health. Further research in partnership with the disability community is needed to determine the effectiveness of these methods at improving patient-physician
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communication. Evaluation and revision of these methods would result in more effective communication and reduced health and health care disparities. Provider communication should be evaluated for other health care providers, such as physician assistants, occupational and physical therapists, etc. In addition, research into patient-provider communication at the institutional level would assist in developing mechanisms more relevant to those environments. References [1] Garrett CR, Treichel CJ, Ohmans P. Barriers to health care for immigrants and nonimmigrants: a comparative study. Minn Med. 1998;81: 52-55. [2] Hu DJ, Covell RM. Health care using by Hispanic outpatients as a function of primary language. West J Med. 1986;144:490-493. [3] Jacobs EA, Lauderdale DS, Meltzer D, et al. Impact of interpreter services on delivery of health care to limited-English-proficient patients. J Gen Intern Med. 2001;16:468-474. [4] Lee Rosenberg CR, Sixsmith DM, et al. Does a physician-patient language difference increase the probability of hospital admission? Acad Emerg Med. 1998;5:86-89. [5] Marin BVO, Marin G, Padilla A, et al. Utilization of traditional nontraditional sources of health among Hispanics. Hisp J Behav Sci. 1983;5:65-80. [6] Derose KP, Pitkin DK, Baker DW. Limited English proficiency and Latino’s use of physician services. Med Care Res Rev. 2000;57:76-91. [7] Sarver J, Baker DW. Effect of language barriers on follow-up appointments after an emergency department visit. J Gen Intern Med. 2000;15:256-264. [8] Schur CL, Albers LA. Language sociodemographics and health care use of Hispanic adults. J Health Care Poor Underserved. 1996;7: 140-158. [9] Millman M. Access to health care in America. Washington, DC: National Academy Press; 1993. [10] Solis JM, Marks G, Garcia M, et al. Acculturation, access to care and use of preventative services by Hispanics: findings from HHANES 1982-1984. Am J Public Health. 1990;80(Suppl):11-19. [11] David RA, Rhee M. The impact of language as a barrier to effective health care in an underserved urban Hispanic community. Mt. Sinai J Med. 1998;65:393-397. [12] Rivadeneyra R, Elderkin-Thompson V, Silver RC, et al. Patient centeredness in medical encounters requiring an interpreter. Am J Med. 2000;108:470-474. [13] Seijo R, Gomez J, Freidenberg J. Language as a communication barrier in medical care for Hispanic patients. Hisp J Behav Sci. 1991;13:363-375. [14] US Conference of Local Health Officers. Language and culture in health care: Coping with linguistic and cultural differences: Challenges to local health departments. Washington, DC: US Conference of Mayors; 1993. [15] Chalabian J, Dunnington G. Impact of language barriers on quality of patient care, resident stress, and teaching. Teach Learn Med. 1997;9: 84-90. [16] Elderkin-Thompson V, Silver RC, Waitzkin H. When nurses double as interpreters: a study of Spanish-speaking patients in a US primary care setting. Soc Sci Med. 2001;52:1343-1358. [17] Flores G, Barton Laws M, Mayo SJ, et al. Errors in medical interpretation and their potential clinical consequences in pediatric encounters. Pediatrics. 2003;111:6-14. [18] Ghandi TK, Burstin HR, Cook EF, et al. Drug complications in outpatients. J Gen Intern Med. 2000;15:149-154. [19] Karter AJ, Ferrara A, Darbinian J, et al. Self monitoring of blood glucose: Language and financial barriers in a managed care population with diabetes. Diabetes Care. 2000;23:477-483.
[20] Lasater LM, Davison AJ, Steiner JF, et al. Glycemic control in English- versus Spanish-speaking Hispanic patients with type 2 diabetes mellitus. Arch Intern Med. 2001;161:77-82. [21] Manson A. Language concordance as a determinant of patient compliance and emergency room use in patients with asthma. Med Care. 1988;26:1119-1128. [22] Perez-Stable EJ, Napoles-Springer A, Miramontes JM. The effects of ethnicity and language on medical outcomes of patients with hypertension or diabetes. Med Care. 1997;35:1212-1219. [23] Tran M, Young I, Phung H, et al. Quality of health services and early postpartum discharge: results from a sample of non-English-speaking women. J Qual Clin Pract. 2001;21:135-143. [24] Collins KS, Hughes DL, Doty MM, et al. Diverse communities, common concerns: Assessing health care quality for minority Americans. Findings from the Commonwealth Fund 2001 Health Care Quality Survey. New York: Commonwealth Fund; 2002. [25] Kravitz RL, Helms LJ, Azari R, et al. Comparing the use of physicians’ time and health care resources among patients speaking English, Spanish, and Russian. Med Care. 2000;38:728-738. [26] Waxman MA, Levitt AM. Are diagnostic testing and admission rates higher in non-English-speaking versus English-speaking patients in the emergency department? Ann Emerg Med. 2000;36:456-461. [27] Baker DW, Hayes R, Fortier JP. Interpreter use and satisfaction with interpersonal aspects of care for Spanish-speaking patients. Med Care. 1998;36:1461-1470. [28] Kline F, Acost FX, Austin W, et al. The misunderstood Spanishspeaking patient. Am J Psychiatry. 1980;137:1530-1533. [29] Kuo D, Fagan MJ. Satisfaction with methods of Spanish interpretation in an ambulatory care clinic. J Gen Intern Med. 1999;14: 547-550. [30] Hampers LC, Cha S, Gutglass DJ, et al. Language barriers and resource utilization in a pediatric emergency department. Pediatrics. 1999;103:1253-1256. [31] Braddock CH, Fihn SD, Levinson W, et al. How doctors and patients discuss routine clinical decisions: informed decision-making in the outpatient setting. J Gen Intern Med. 1997;12:339-345. [32] Tingus SJ, Roeker S, Lutzky S, et al. Plenary session on disability. Neurorehab Neural Rep. 2005;19:10S-14S. [33] Smith DL. Disparities in health care access for women with disabilities in the US from the 2006 National Health Interview Survey (NHIS). Dis Health. 2008;1:79-88. [34] Lawthers AG, Pransky GS, Peterson LE, et al. Rethinking quality in the context of persons with disability. Int J Qual Health Care. 2003;15:287-299. [35] Morrison EH, George V, Mosquedo L. Primary care for adults with physical disabilities: perceptions from consumer and provider focus groups. Fam Med. 2008;40:645-651. [36] Scheer J, Kroll T, Neri MT, et al. Access barriers for persons with disabilities: the consumer’s perspective. J Disabil Pol Stud. 2003;13:221-230. [37] Iezzoni LI, Davis RB, Soukup J, et al. Quality dimension that most concern people with physical and sensory disabilities. Arch Int Med. 2003;163:2085-2092. [38] Drainoni M-L, Lee-Hood E, Tobias C, et al. Cross-disability experiences of barriers to health-care access: consumer perspectives. J Disabil Pol Stud. 2006;17:101-115. [39] Hanson KW, Newman P, Dutwin D, et al. Uncovering the health challenges facing people with disabilities: the role of health insurance. Health Affairs-Web Exclusives. Available at http://content. healthaffairs.org.exp.slu.edu/webexclusives/index.dtl?year52003. [40] Iezzoni LI, Ramanan RA, Drews RE. Teaching medical students about communicating with patients who have sensory or physical disabilities. Disabil Stud Q. 2005;25. Available at www.dsq-sds. org. [41] Iezzoni LI, Ramanan RA, Lee S. Teaching medical students about communicating with patients with major mental illness. J Gen Intern Med. 2006;21:1112-1115.
D.L. Smith / Disability and Health Journal 2 (2009) 206e215 [42] Bachman SS, Vedrani M, Drainoni M-L, et al. Provider perceptions of their capacity to offer accessible health care for people with disabilities. J Disabil Pol Stud. 2006;17:130-136. [43] Gill C. A psychological view of disability culture. Disabil Stud Q. 1995;15:16-19. [44] Gill C. Disability culture: a framework for understanding disability, family and community. Disabil Messenger. 1999;11. [45] Kemp J. Keynote address. Presentation at ADA symposium, Kansas City, MO, May 1999. [46] Hall LJ, McGregor JA. A follow-up study of the peer-relationships of children with disabilities in an inclusive school. J Spec Ed. 2000;34: 114-126. [47] Kroll T, Beatty P, Bingham S. Primary care satisfaction among adults with disabilities: the role of patient-provider communication. Man Care Q. 2003;11:11-19. [48] Cohen SB, Buchmueller T. Trends in medical care costs, coverage, use and access: research findings from the Medical Expenditure Panel Survey. Med Care. 2006;44:I1-I3. [49] Wei W, Findley PA, Sambamoorthi U. Disability and receipt of clinical preventative services among women. Womens Health Issues. 2006;16:286-296. [50] Schootman M, Jeffe DB. Identifying factors associated with disability-related differences in breast cancer screening (United States). Cancer Causes Control. 2003;97-107. [51] Newacheck PW, Inkelas M, Kim SE. Health services use and health care expenditures for children with disabilities. Pediatrics. 2004;114:79-85. [52] Agency for Healthcare Research and Quality. Medical Expenditure Panel Survey: Survey background. Available at http://www.meps. ahrq.gov/mepsweb/about_meps/survey_back.jsp.
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[53] Americans with Disabilities Act of 1990. Available at http://www. eeoc.gov/policy/docs/902cm.html. [54] Johnson WG. There is a difference between differences and disparities. Disabil Health. 2008;1:181-183. [55] Phelps E. The statistical theory of racism and sexism. Am Econ Rev. 1972;62:659-661. [56] Balsa AI, McGuire TG. Statistical discrimination in health care. Am J Health Econ. 2001;20:881-907. [57] DeJong G, Palsbo SE, Beatty PW, et al. The organization and financing of health services for persons with disabilities. Milbank Q. 2002;80:261-301. [58] DeJong G. Primary care for people with disabilities: an overview of the problem and opportunities. Am J Phys Med Rehabil. 1997;76:1-7. [59] O’Day B, Palsbo SE, Dhont K, et al. Health plan selection criteria by people with impaired mobility. Med Care. 2002;40:732-742. [60] Hwang K, Johnston M, Tulsky D, et al. Access and coordination of health care service for people with disabilities. J Disabil Pol Stud. 2009;20:28-34. [61] Eddey GE, Robey KL. Considering the culture of disability in cultural competence education. Acad Med. 2005;80:706-712. [62] Rudd RE, Anderson JE, et al. The health literacy environment of hospitals and health centers: Partners in action: Making your healthcare facility literacy-friendly. Boston, MA: Harvard School of Public Health. 2006. [63] Allen M, Iezzoni LI, Huang A, et al. Improving patient-clinician communication about chronic conditions: description of an internetbased nurse e-coach intervention. Nurs Res. 2008;57:107-112. [64] Palsbo SE, Bauer D. Telerehabilitation: managed care’s new opportunity. Man Care Q. 2000;8:56-64.
Disparities in patient-physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS) Diane L. Smith, Ph.D., OTR/L Department of Occupational Therapy and Occupational Science, University of Missouri, Columbia, MO 65211, USA
Abstract Background: Ineffective patient-physician communication has been shown to result in poorer health outcomes for various vulnerable populations. However, little research has been done on patient-physician communication issues as perceived by persons with disabilities. The purposes of this study are to determine if there is a relationship between disability and patient-physician communication and how disability affects the likelihood of effective patient-physician communication. The research questions for this study are: (1) Is there a significant difference in patient-physician communication for persons with disabilities compared to persons without disabilities? (2) Does having a disability influence the likelihood of ineffective patient-physician communication? Methods: Data were obtained from the 2006 Medical Expenditure Panel Survey (MEPS). Chi-square analyses were performed to determine if there a significant difference in patient-physician communication for persons with disabilities compared with persons without disabilities. A series of logistic regression analyses were conducted examining the likelihood of ineffective patient-physician communication with the independent variable of disability status. Results: Those with a disability are significantly more likely than persons without a disability to perceive that the physician does not listen to them, does not explain treatment so that they understand, does not treat them with respect, does not spend enough time with them, and does not involve them in treatment decisions. Regression analyses further revealed that persons with a disability are from 1.36 to 1.78 times as likely to perceive inadequate patient-physician communication. Conclusions: This study revealed that persons with disabilities are at increased risk of experiencing ineffective patient-physician communication, compromising current health status and increasing the possibility of secondary health conditions. Several suggestions were made with regard to incorporation of ‘‘disability literacy’’ mechanisms such as physician training, health facility environmental assessment, and use of technologies such as telehealth and e-health. Further research in partnership with the disability community is needed to determine the effectiveness of these methods in improving patient-physician communication. Ó 2009 Elsevier Inc. All rights reserved. Keywords: Communication; Disability literacy; health care access
Inadequate communication between patients and physicians has been associated with lower rates of access to health care [1e9]. One study found that communication barriers ranked among the top three obstacles preventing minorities and the poor from receiving necessary [health] care [10]. Communication barriers can also result in diminished patient comprehension of medical information, ultimately affecting the quality of health care received bypatients [11e23]. These barriers may reduce a patient’s abilities to follow physician instructions, adhere to
Financial disclosure: The authors have no conflicts of interest to declare. Corresponding author: 423 Lewis Hall. Fax: (573) 884-2610. E-mail address: [email protected] 1936-6574/09/$ e see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.dhjo.2009.06.002
treatments, or comply with instructions for follow-up care and may compromise the quality of care due to misdiagnosis, increasing costs, and inefficiencies in the health care system as a result of unnecessary testing caused by the lack of a proper medical history [13,22,24e27]. All of these factors can contribute to lower patient satisfaction [28e30]. Despite this concern, one study showed that physicians almost never (only 2% of the time) assess the patient’s understanding of the physician’s instructions [31]. The unique cultural, language, and communication barriers to effective patient-physician communication faced by persons with disabilities are beginning to be considered. The purposes of this study are to determine the relationship of disability and patient-physician communication and how disability affects the likelihood of effective patient-physician communication.
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Persons With a Disability and Patient-Physician Communication Most literature on patient-physician communication for persons with a disability has been imbedded under the broader issues of access and satisfaction with health care. Studies have shown that persons with disabilities were found to be ‘‘less likely to receive timely and appropriate medical treatment for their chronic services.which translates into higher mortality rates, complications, and health care costs’’ [32]. Specifically, Smith [33] found that persons with a disability were 2.26 to 3.78 times more likely not to have access to health care as were persons without a disability. Previous studies have identified various barriers preventing access to health care for persons with physical disabilities [34,35]. Scheer and colleagues [36] ]identified three broad categories of barriers: environmental, structural, and process. Specifically related to communication, included under environmental barriers is the failure of many health care professionals to provide patients with alternative methods of communication, such as large print or Braille materials and sign language interpreters [37]. Drainoni et al. [38], defining these barriers as structural, found that many individuals with speech or hearing disabilities described communication problems when they attempted to contact physicians’ offices by telephone. Deaf individuals cited lack of TTY machines or staff properly trained to use them in health care settings. Deaf individuals also cited difficulty obtaining American Sign Language (ASL) interpreters for medical visits on short notice and gaps in understanding caused by physician attempts at written communication. Furthermore, physicians were sometimes unwilling to write out their findings or, if they did, used medical terminology that the patients did not understand. Process barriers involve the delivery of service [36]. Lack of physician knowledge and lack of timeliness of service are issues frequently reported by patients. Hanson et al. [39] found that one in four persons with a disability who was studied indicated difficulty finding a physician who was knowledgeable regarding the implications of their disability. Drainoni et al. [38] identified personal and cultural barriers including misconceptions about people with disabilities, insensitivity and lack of respect, failure to take patients and their caregivers seriously, reluctance or unwillingness to care for persons with disabilities, and cultural gaps between patient and physician. These cultural gaps between the patient and physician may occur because of lack of recognition and knowledge of the physician to disability culture, which may occur as early as medical school training. When examining how medical students are taught to communicate with patients who have sensory or physical disabilities, medical students admitted that they knew little about the effects of sensory and physical impairments on daily life [40]. Additionally, during training, students often witnessed residents taking short cuts when caring for persons with disabilities such as not transferring them from the wheelchair to the examination
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table for evaluation and treatment and writing notes to deaf persons rather than using an ASL interpreter. With regard to persons with major mental illness, Iezzoni et al. [41] found that medical student observations resulted in four themes: fears and anxieties about interacting with persons with major mental illness; residents ‘‘protecting’’ students from patients with major mental illness; lack of clinical maturity; and barriers to learning during psychiatry rounds. Students commented that their preferred way of learning about all persons with disabilities was through actual patient contact. When practicing physicians were surveyed, almost half stated that they had no training related to service for persons with disabilities [42]. They also commented that they were more likely to provide services to patients with chronic illnesses or mobility, cognitive, or psychiatric impairments than they are to serve individuals with communication limitations or visual impairments.
Disability Culture and Language To improve patient-physician communication, the physician must consider the culture of the patient, including disability culture. Gill [43,44] defined disability culture as including shared, long-standing social oppression; art; humor; history; evolving language and symbols; unified worldview; beliefs and values; and strategies for surviving and thriving. Core values include (1) an acceptance of human differences, (2) a matter-of-fact orientation toward helping, (3) a tolerance for lack of resolution, (4) disability humor, and (5) a sophisticated future orientation. Many researchers have documented the existence of a disability culture, its functions, its ‘‘core values,’’ and its similarities to and differences from other cultural groups [43,45]. Disability culture extends beyond diagnoses and embraces all persons who have been marginalized by society simply because they are viewed as defective, not valid (invalid), or somehow in need of pity. Even people with invisible disabilities such as chronic health conditions or mental illness experience this marginalization [46]. Knowledge and training in cultural competency for health care providers have mostly focused on issues related to race and ethnicity, leaving out issues relevant to the disability community. However, as with all cultures, lack of adequate patient-physician communication, knowledge, and recognition of the existence of disability culture may prevent health care providers from considering health care issues that are relevant and important to this community. The majority of these studies examining issues of patient-physician communication with regard to persons with disabilities have come from focus groups and small samples [38,47]. Therefore, the purpose of this study is to use data provided by the 2006 Medical Expenditure Panel Study (MEPS), a large national dataset, to determine the relationship of disability and patient-physician communication as well as how disability status affects the receipt of
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appropriate patient-physician communication. MEPS data have been used to examine issues of access to health care [48e51] but not specifically with regard to patient-physician communication. Therefore, the research questions for this study are: (1) Is there a significant difference in patient-physician communication for persons with disabilities compared to persons without disabilities? (2) Does having a disability influence the likelihood of ineffective patient-physician communication? The hypotheses are as follows: (1) There is a significant relationship between having a disability and patient-physician communication. (2) Having a disability increases the likelihood of ineffective patient-physician communication.
Methods Instrument To answer the research questions, data were obtained from the 2006 MEPS, a nationwide survey of families and individuals, health care providers, and employers. MEPS collects data on the specific health services including frequency of use, the cost, and payment mechanisms and health insurance. MEPS has two major components: the Household Component and the Insurance Component. The Household Component, used in this study provides data from a sample of individuals and households, supplemented by data from their medical providers in selected communities drawn from a nationally representative sample. Data include demographic characteristics, health conditions, health status, use of medical services, charges and source of payments, access to care, satisfaction with care, health insurance coverage, income, and employment [52]. MEPS data have been used to support a highly visible set of descriptive and behavioral analyses of the U.S. health care system, including studies of the population’s access to, use of, and expenditures and sources of payment for health care; the availability and costs of private health insurance coverage and those without health care coverage; and the role of health status in health care use, expenditures and household decision making, and in health insurance and employment choices [48]. MEPS data have also been used in several studies regarding health care services and persons with disabilities. For example, MEPS data have been used to examine the receipt of clinical preventative services among women [49], factors associated with disabilityrelated differences in breast cancer screening [50], and health services use and health care expenditures for children with disabilities [51]. Variables The dependent variable for the chi-square analyses was ‘‘disability,’’ which was determined by the response to ‘‘Do you have any limitation in work, housework, or school activities [yes, no]?’’ In previous studies [49e51], the
definition of disability included limitations in activities of daily living (ADLs), instrumental activities of daily living (IADLs), and age-appropriate social roles such as play. The definition of disability used in this study is appropriate as limitation in work, housework, or school activities is inclusive of IADLs and age-appropriate social roles. This definition of disability is also similar to the definition put forth by the Americans with Disabilities Act (ADA) of ‘‘having a physical or mental impairment that substantially limits one or more major life activities’’ [53]. Independent variables for the chi-square analyses and dependent variables for the logistic regression analyses that defined ‘‘patient-physician communication’’ include responses to all of the following questions, ‘‘If there were a choice between treatments, how often would the medical provider ask you to help make the decision [usually to always, sometimes to never]?’’ ‘‘Does the physician listen to your medical concerns [usually to always, sometimes to never]?’’ ‘‘Does the physician explain the treatment so that you understand [usually to always, sometimes to never]?’’ ‘‘Does the physician treat you with respect [usually to always, sometimes to never]?’’ ‘‘Does the physician spend enough time with you [usually to always, sometimes to never]?’’ Demographic variables include race [white, other race]; gender [male, female]; education [no school to grade 8, some high school, high school graduate/GED; some college/college graduate]; income [$0 to $14,999, $15,000 to $24,999, $25,000 to $34,999, $35,000 to $49,999, $50,000 and up]; age [18 to 34, 35 to 44, 45 to 54, 55 to 64 years]; marital status [coupled, uncoupled], insurance status [yes, no], and perceived health status [good to excellent, fair to poor]. Analysis Chi-square analyses were performed to determine if there a significant difference in patient-physician communication for persons with disabilities compared with persons without disabilities. The chi-square test is a statistical measurement used to examine similarities and differences in categorical variables. To examine the relationships more fully, a series of logistic regression analyses were conducted examining the likelihood of ineffective patient-physician communication using the variables of the physician not listening to the patient, not explaining treatment so that the patient understands, not treating the patient with respect, not spending enough time with the patient, and not involving the patient in treatment decisions and access variables of inability to receive medical care when needed and inability to get needed medication, with the independent variable of disability status and confounding factors of gender, age, marital status, race, income, employment, educational status, and insurance. The coefficients for this model are expressed as odds ratios (ORs); 95% confidence intervals (CIs) are reported to indicate the precision of these estimates. All analyses were conducted using the Statistical Package for the Social Sciences (SPSS),
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version 16. This research was approved by the institutional research board.
Table 1 Demographics of Population Variable
Results Of those surveyed (30,999) in 2006, 2591 persons stated that they have a disability (8.4%). Those persons with a disability tended to be significantly older, female, uncoupled, less educated, more likely to be unemployed, and in poorer health and to have a lower income compared with persons without a disability (Table 1). Similar to other studies, persons with disabilities were more likely to have insurance than were persons without a disability. These demographic differences are important to consider when comparing persons with a disability to persons without a disability on patient-physician communication issues. Because of this, the decision to perform regression analysis was made to determine the influence of not only disability status but also these demographic variables. Relationship Between Disability Status and PatientPhysician Communication Results from the chi-square analysis (Table 2) showed that persons with a disability were more likely than persons without a disability to perceive that the physician did not listen to what they had to say (12.7% versus 9.8%, p ! .01); did not explain treatment so that they understood (13.2% versus 9.1%, p ! .01); did not treat them with respect (12.1% versus 8.2%, p ! .01); did not spend enough time with them (17.7% versus 14.3%, p ! .01); did not involve them in treatment decisions (21.8% versus 17.4%, p ! .01); and did not explain options for treatment (7.2% versus 5.6%, p ! .01). Relationship of Variables to Likelihood of Inadequate Patient-Physician Communication Results from a series of regression analyses (Tables 3 through 8) show that having a disability increases the likelihood of ineffective communication in all measured patientphysician communication. Not having insurance often increased the likelihood of ineffective patient-physician communication as much and sometimes more than having a disability. In addition, being female, uncoupled, and older (especially over 55 years of age) and having more education and having a higher income also reduced the likelihood of ineffective communication for all measured patientphysician communication. Persons with a disability are 1.57 times as likely as persons without a disability to perceive that the physician is not listening to them (Table 3); 1.46 times as likely as persons without a disability to perceive that the physician is not explaining treatment in an understandable manner (Table 4); 1.78 times as likely as persons without a disability to perceive that the physician does not treat them with
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Gender* Male Female Age (yr)* 18e34 35e44 45e54 55e64 Race* White Black Other race Hispanic* Yes No Education* No school to grade 8 Some high school High school graduate/GED Some college/college graduate Income* $0e$14,999 $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Marital status* Coupled Uncoupled Insurance* Yes No Health status* Good to excellent Fair to poor
Persons With a Disability
Persons Without a Disability
43.1% (651) 56.9% (861)
47.1% (8623) 52.9% (9675)
13.4% 17.7% 33.4% 35.5%
39.4% 23.3% 22.2% 15.1%
(203) (267) (505) (537)
(7204) (4270) (4056) (2769)
70.8% (1070) 23.6% (357) 5.6% (85)
76.4% (13,975) 16.6% (3036) 7.0% (1287)
14.7% (223) 85.3% (1289)
26.8% (4909) 73.2% (73.2%)
11.8% 23.4% 37.0% 27.9%
(176) (349) (552) (416)
8.4% 16.4% 30.7% 44.5%
(1528) (2961) (5557) (8055)
70.2% 15.4% 6.0% 4.6% 3.8%
(1060) (232) (90) (69) (58)
36.9% 17.5% 13.5% 13.4% 18.6%
(6742) (3207) (2464) (2455) (3407)
40.6% (614) 59.4% (898)
55.4% (10,140) 44.6% (8151)
80.0% (1210) 20.0% (302)
69.6% (12,739) 30.4% (5559)
33.5% (506) 66.5% (1006)
90.9% (16,588) 9.1% (1670)
* p ! .01.
respect (Table 5); 1.46 times as likely as persons without a disability to perceive that the physician does not spend enough time with them (Table 6); 1.41 times as likely to perceive that the physician does not explain treatment options (Table 7); and 1.36 times more likely than persons without a disability to perceive that the physician does not involve them in treatment decisions (Table 8). Those without insurance are 1.54 times more likely than those with insurance to perceive that the physician is not listening to them; 1.54 times as likely as those with insurance to perceive that the physician has not explained treatment in an understandable manner; 1.63 times as likely as persons who do have insurance to perceive that the physician does not treat them with respect; 1.38 times as likely as those who have insurance to perceive that the physician does not spend enough time with them; and 1.32 times as likely as those who have insurance to perceive that the physician does not explain treatment options. Insurance status does not appear to affect perceptions of the likelihood of the physician involving them in treatment decisions.
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Table 2 Relationship of Disability and PatienteProvider Communication Variable Physician listens to what patient has to say* Sometimes to never Usually to always Physician explains treatment so that patient understands* Sometimes to never Usually to always Physician treats patient with respect* Sometimes to never Usually to always Physician spends enough time with patient* Sometime to never Usually to always Physician involves client in treatment decisions* Sometimes to never Usually to always Physician explains options for treatment* Yes No
Person With a Disability
15.8% (187) 84.2% (996)
Person Without a Disability
10.5% (1023) 89.5% (8683)
14.8% (175) 85.2% (1010)
9.5% (927) 90.5% (8808)
15.3% (181) 84.7% (1002)
8.8% (855) 91.2% (8897)
20.9% (247) 79.1% (936)
15.5% (1511) 84.5% (8241)
23.4% (292) 76.6% (958)
92.1% (1195) 7.9% (102)
17.1% (1914) 82.9% (9279)
94.6% (11,202) 5.4% (635)
* p ! .01.
Race and ethnicity do not seem to affect how patients perceive whether their physician is listening to them. Those who are a race other than white and those who are Hispanic are 1.32 and 1.36 times, respectively, more likely than those who are white to perceive that the physician is not explaining treatment in an understandable manner; 1.08 and 1.13 times, respectively, as likely as those who are white to perceive that the physician does not treat them with respect; 1.18 times and 0.97 times (respectively) as likely as persons who are white to perceive that the physician does not spend enough time with them; 0.91 and 1.14 times, respectively, as likely to perceive that the physician does not explain treatment options; and 1.42 and 1.05 times, respectively, more likely than those who are white to perceive that the physician does not involve them in treatment decisions.
Discussion There is a significant relationship between having a disability and all aspects of patient-physician communications assessed in this study. These results are consistent with other findings [38], but this study provides additional information through the use of a large national dataset as to the extent of how disability affects the likelihood of experiencing ineffective patient-physician communication. In addition to disparities faced by persons with disabilities, those persons who are not white, who are male, and who are youngeralso perceive poorer patient-provider communication. In addition, those without insurance face disparities similar to those
Table 3 Relationship of Variables to Likelihood of Physician Not Listening to the [EQ2]Patient Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.57
1.30e1.90
1.00 0.92
0.81e1.04
1.00 0.95 0.90 0.67
0.80e1.13 0.76e1.07 0.55e0.81
1.00 1.03
0.89e1.19
1.00 1.02
0.86e1.21
1.00 0.90 0.83 0.81
0.69e1.17 0.65e1.07 0.63e1.04
1.00 1.13 1.05 0.85 0.64
0.95e1.34 0.86e1.28 0.69e1.06 0.51e0.79
1.00 1.54
1.33e1.78
1.00 0.97
0.87e1.13
with disabilities. Therefore, it is important when designing interventions to improve patient-provider communication for persons with disabilities that consideration be made of other factors such as race/ethnicity, age, gender, and insurance status. As with all interventions and advocacy strategies, no one size fits all. Results of this study are important as ineffective patientphysician communication has been shown to prevent persons from receiving needed care [10e24]. The results of this study show that a disparity exists in patient-physician communication for those with a disability compared with those without a disability; however, it does not provide an explanation for the disparity. One explanation incorporates discrimination as a potential contributor to health care disparities. Discrimination against persons with disabilities can originate from prejudices or from misperceptions held by nonprejudiced persons, a form of discrimination known as ‘‘statistical discrimination’’ [54e56]. Johnson further states that relatively little is known concerning the effects of discrimination on access to quality health care for people with disabilities [54]. Johnson argues that even when
D.L. Smith / Disability and Health Journal 2 (2009) 206e215 Table 4 Relationship of Variables to Likelihood of Physician Not Explaining Treatment So That Patient Understands Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.46
1.20e1.78
1.00 0.86
0.75e0.98
1.00 0.90 0.91 0.81
0.75e1.07 0.76e1.09 0.67e0.98
1.00 1.32
1.14e1.54
1.00 1.36
1.15e1.62
1.00 0.91 0.84 0.63
0.70e1.17 0.66e1.07 0.49e0.82
1.00 0.96 1.12 0.71 0.55
0.80e1.15 0.91e1.37 0.56e0.90 0.44e0.71
1.00 1.54
1.33e1.79
1.00 1.05
0.92e1.20
a person with a disability experiences discrimination in one context, it does not necessarily imply that every negative experience in health care is an expression of discrimination and could lead to interventions that aim the wrong targets. Another explanation focuses on issues of cultural competency. Typically, health care disparity, cultural competency, and communication issues have focused on race and ethnicity. However, as this research shows, a similar focus needs to be placed on issues for persons with disabilities. To complicate matters, issues concerning people with disabilities demonstrate the enormous diversity within the population of people with disabilities in terms of varying etiologies, underlying health conditions, degrees of activity limitation, ages of onset, natural histories, longevity, gender, ethnicity, and socioeconomic status. One suggestion by DeJong et al. [57] is promotion of ‘‘disability literacy’’ and ‘‘disability competence’’ among physicians and other health care providers and staff, including mandatory training and professional development requirements. Disability literacy means that the provider is knowledgeable about accessibility and the health care needs of individuals
211
Table 5 Relationship of Variables to Likelihood of Physician Not Treating the Patient With Respect Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.78
1.38e2.04
1.00 0.87
0.75e0.98
1.00 0.92 0.86 0.78
0.76e1.10 0.70e1.02 0.62e0.93
1.00 1.08
0.92e1.26
1.00 1.13
1.01e1.44
1.00 1.12 1.03 0.95
0.83e1.46 0.76e1.30 0.67e1.17
1.00 1.08 0.98 0.78 0.62
0.88e1.27 0.74e1.13 0.56e0.89 0.44e0.71
1.00 1.63
1.40e1.91
1.00 1.01
0.88e1.17
with disabilities. This concept is still in its infancy, and additional research with input from the disability community is needed to define disability literacy in the health care environment and to identify concerns in health care that lead to disability illiteracy [57]. Health care providers also must begin to recognize and learn about disability culture and its importance in health care. Many health care providers lack sufficient training to provide care for people with disabling conditions who have both general, preventative health care needs as well as needs that are specific to their disabling condition [58,59]. Another explanation for the disparity in patient-physician communication is the influence of increasingly competitive managed care environment [47]. For example, managed care may be reducing the length of appointments between physicians and patients. In addition, the administrative burden placed on physicians who practice in managed care settings may take up significant amounts of time that physicians might otherwise spend communicating with their patients. Financial pressures imposed by some managed care plans may also force physicians to see more
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Table 6 Relationship of Variables to Likelihood of Physician Not Spending Enough Time With the Patient
Table 7 Relationship of Variables to Likelihood of Physician Not Explaining Treatment Options
Variable
Variable
Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.46
1.19e1.66
1.00 0.97
0.86e1.06
1.00 0.82 0.75 0.63
0.70e0.94 0.64e0.86 0.52e0.73
1.00 1.18
1.05e1.34
1.00 0.97
0.88e1.18
1.00 0.96 0.98 0.97
0.75e1.20 0.76e1.20 0.74e1.17
1.00 1.00 0.99 0.76 0.70
0.84e1.14 0.80e1.13 0.59e0.86 0.55e0.78
1.00 1.38
1.21e1.57
1.00 0.97
0.87e1.08
patients in a shorter amount of time, thus curtailing the development of positive patient-physician communication. These time constraints may be especially harmful to patients with disabling conditions who may need additional time to discuss disability-related concerns as well as the general healthcare concerns and preventive service needs that all adults have.
Interventions Studies have shown that improved physician-patient communication can begin and is sought as early as medical school training [40,41]. Training with actual patients with physical, sensory, and mental health disabilities may assist with improving future physician knowledge of specific issues experienced by persons with various disabilities. This improved knowledge may then result in improved patient-provider communication. Hwang et al. [60] stress the importance of providing a consumer-driven approach to health care (distinct from facility-directed health care) as a more effectual, cost-effective and subjectively
Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.41
1.07e1.74
1.00 1.05
0.89e1.22
1.00 1.23 1.21 0.97
0.99e1.53 0.97e1.50 0.75e1.22
1.00 0.91
0.75e1.10
1.00 1.14
0.96e1.45
1.00 0.84 0.88 0.89
0.60e1.14 0.64e1.17 0.63e1.17
1.00 0.77 0.86 0.88 0.86
0.60e0.96 0.64e1.07 0.64e1.08 0.63e1.03
1.00 1.32
1.10e1.59
1.00 1.22
1.04e1.43
satisfying method of improving patient care for persons with disabilities. Eddy and Robey further suggest that to competently care for persons with disabilities, the physician must be willing and able to explore means of communicating with persons who might be fully nonverbal or have other verbal communication impairments [61]. They also suggest that to successfully achieve this, physicians need a basic familiarity with an array of assistive and augmentative communication devices commonly used by patients who are nonverbal. In addition, physicians must be aware that inability to speak does not necessarily reflect a cognitive deficit. However, for patients who do have a cognitive deficit, cultural competence may mean adjusting the complexity of speech to be understandable and not in an infantilizing manner. Finally, ignoring the individual as a potential key source of clinical information and consequently foreclosing his or her role as a partner in the care process is another example of cultural incompetence and of failing to fulfill basic obligations of autonomy for all patients with and without disabilities.
D.L. Smith / Disability and Health Journal 2 (2009) 206e215 Table 8 Relationship of Variables to Likelihood of Physician Not Involving Patient in Treatment Decisions Variable Disability No disability (reference) Has a disability Gender Male (reference) Female Age (yr) 18e34 (reference) 35e44 45e54 55e64 Race White (reference) Other race Hispanic No (reference) Yes Educational level No school to grade 8 (reference) Some high school High school graduate/GED Some college/college graduate Income $0e$14,999 (reference) $15,000e$24,999 $25,000e$34,999 $35,000e$49,999 $50,000þ Insurance Yes No Marital status Coupled (reference) Uncoupled
OR
95% CI
1.00 1.36
1.16e1.58
1.00 0.94
0.85e1.03
1.00 1.17 1.13 0.88
1.03e1.34 0.99e1.29 0.76e1.02
1.00 1.42
1.27e1.58
1.00 1.05
0.92e1.20
1.00 0.92 0.82 0.80
0.75e1.14 0.67e0.99 0.65e0.97
1.00 0.93 0.86 0.97 0.87
0.81e1.07 0.73e1.01 0.82e1.13 0.74e1.01
1.00 1.01
0.90e1.02
1.00 1.18
1.06e1.31
213
provide outreach to persons with disabilities who are unable to access physicians due to transportation or geographic limitations [63,64]. Strengths and Limitations
A potential method to address ‘‘disability literacy’’ is to incorporate methods used for health literacy in general. For example, the health literacy environmental evaluation developed by Rudd and Anderson [62] could be adapted for persons with a disability using feedback from people with disabilities. This evaluation assesses the health literacy of health care facilities and includes subsections of navigation, print communication, oral exchange, technology, and policies and procedures. This evaluation could be adapted to assess the availability of TTY, signage in large lettering or Braille, availability of Deaf interpreters and/or staff trained in ASL, medical forms and educational materials in alternative formats, disability-accessible computers,and training for medical and support staff in disability cultural issues. Established health literacy techniques such as training professional and support staff in the use of plain language and teach-back would also need to be incorporated within these types of communication. Finally, the use of technologies such as Internet coaching, telehealth, and telerehabilitation with alternative forms of communication such as close-captioning and ASL could be used to
The strengths of this study are that it incorporates responses from a large national database that has been used in other studies that examine various aspects of access to health care. Questions specifically about patient-physician communication were available as was demographic information necessary in the analyses. Weaknesses in the study included the definition of disability, which included persons with limitations in any work, housework, or school activities. This definition of disability is broader than more impairment-based definitions but is more in line with the ADA definitions of disability. However, there are persons who have these limitations who would not consider themselves ‘‘disabled’’ and there are those who have disabilities who are not limited in these areas. Therefore, the definition is not perfect. Another weakness is that persons with disabilities were only asked these questions about physicians and not about other health care providers. Sampling for the survey may be biased to those wishing to participate in the survey. Also, this survey is only conducted for noninstitutionalized adults, which does not include residential facilities, nursing homes, or prisons. There is a great need to consider the risk factors for persons with disabilities with regard to patient-provider communication both in communities and institutions. It is possible that reducing these risks in both settings will likely take very diverse and disparate strategies. The purpose of this study was to examine patient-physician for persons with disabilities in the community. Examination of patient-physician communication of persons with disabilities in institutional settings requires further study. Another limitation is that the definition of patient-physician communication was limited to those questions provided from the survey and therefore does not represent all aspects of this communication.
Conclusions Lack of appropriate patient-physician communication has been shown to result in increased health and health care disparities, especially for vulnerable populations. This study revealed that persons with disabilities are at increased risk of experiencing ineffective patient-physician communication, potentially compromising current health status and increasing the possibility of secondary health conditions. Several suggestions were made with regard to incorporation of ‘‘disability literacy’’ mechanisms such as provider training, health facility environmental assessment, and use of technologies such as telehealth and e-health. Further research in partnership with the disability community is needed to determine the effectiveness of these methods at improving patient-physician
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