- Email: [email protected]
Disability and physical and communication-related barriers to health care related services among Florida residents: A brief report
ARTICLE IN PRESS
Disability and Health Journal
-
(2016)
-
www.disabilityandhealthjnl.com
Brief Report
Disability and physical and communication-related barriers to health care related services among Florida residents: A brief report Sarah E. Bauer, M.P.H.a,*, Jessica R. Schumacher, Ph.D., M.S.a, Allyson Hall, Ph.D., M.B.A., M.H.S.a, Nicole M. Marlow, Ph.D., M.S.P.H., B.S.a, Claudia Friedel, M.P.H.a,b, Danielle Scheer, B.A.a,b, and Susan Redmon, R.N., M.P.H.c a
Department of Health Services Research, Management and Policy, University of Florida, USA b Florida Disability and Health Program, USA c Florida Department of Health, Disability and Health Program, USA
Abstract Background: Research has not fully characterized barriers to health care faced by persons with disabilities (PWD) which constitutes a critical gap given the increased risk of chronic illness faced by PWD. Objective: To understand the current barriers to seeking health care-related services for PWD in Florida. Methods: The study was based on a random-digit-dial telephone interview survey of respondents aged 18 and over (n 5 1429). Multivariable logistic regression assessed the relationship between disability and physical and communication barriers. Results: One thousand four hundred and twenty-nine Florida residents participated in the survey. Thirty-three percent of respondents (n 5 471) reported having a disability. PWD were significantly older (mean age 68 vs. 61) and had lower levels of income and education than persons without disabilities (PWOD) ( p ! 0.05). In adjusted analyses, PWD had significantly higher odds of encountering a physical environment barrier (Odds Ratio [OR] 5 16.6 95% CI: 7.9, 34.9), a clinical experience barrier (OR 5 13.9 95% CI: 6.9, 27.9) a communication and knowledge barrier (OR 5 6.7 95% CI: 4.0, 11.3) and a barrier coordinating care (OR 5 5.7 95% CI: 3.4, 9.6) compared to persons without disabilities (PWOD). Conclusions: PWD disproportionately face health care access difficulties that can impede the receipt of high quality care within and between provider visits. Efforts to reduce physical barriers and improve communication between providers and PWD may improve functional status and quality of life for these patients. Ó 2016 Elsevier Inc. All rights reserved. Keywords: Access to health care; Physical barriers; Communication barriers; Disparities
In 2012, 38 million Americans (12 percent of the population) reported having one or more physical or emotional disabilities.1 An aging baby boomer population2 and rising prevalence rates of overweight and obesity3 will expand the number of Americans living with disabilities in coming
Prior presentation: This manuscript was presented as an oral presentation at the APHA Annual Research Meeting in November, 2014. Conflicts of interest and source of funding: To the best of our knowledge, no conflict of interest, financial or other, exists. The Florida Disability and Health Program is funded by the National Center for Birth Defects and Developmental Disability, Disability and Health Team: Centers for Disease Control and Prevention, Atlanta, GA (Grant: U59DD000992-02). * Corresponding author. Department of Health Services Research, Management & Policy, University of Florida, P.O. Box 100195, 1225 Center Drive, Gainesville, FL 32611-0195, USA. Tel.: þ1 443 350 6580. E-mail address: [email protected] (S.E. Bauer). 1936-6574/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2016.03.001
decades. Persons with disabilities (PWD) are burdened by social and environmental disadvantages, including lower educational levels, lower incomes and higher unemployment rates.1 In addition to social and environmental disadvantages, PWD are more likely to report being in fair or poor health, using tobacco, and forgoing physical activity.4 This reality poses a major challenge to the health care community striving to address the health care needs of this population. Despite the passage of the Americans with Disabilities Act (ADA) over two decades ago, many barriers to care for PWD remain in the United States health care system, rendering PWD particularly susceptible to receiving substandard health care.5 Persistent challenges in the form of physical, policy, procedural, and attitudinal barriers5 are cited when PWD attempt to access health care services.5e10 Barriers throughout the health system are created by
ARTICLE IN PRESS 2
S.E. Bauer et al. / Disability and Health Journal
inaccessible equipment and facilities, lack of training for health care professionals and inability to provide health communication using accessible modalities (e.g., large print, audio, Braille).5 Commonly cited physical barriers include lack of transportation and physical inaccessibility of the facility, exam rooms, and equipment.8,11e16 Additionally, prior research has demonstrated that PWD are more likely to report issues with provider communication (e.g., doctor in hurry, not explaining medical problems sufficiently, acting in condescending manner) and providers lacking of knowledge about disabilities.17e19 PWD often report the need to teach providers about their disability and have reported not having all of their needs met during the visit.20,21 Such physical and provider-related barriers result in more difficulty accessing health care services for PWD compared to persons without disabilities (PWOD).4 In line with the Healthy People 2020 vision, the objective of this work was to identify physical and communication-related barriers PWD encounter when accessing health care services. Our analysis specifically addressed this objective in a population of PWD living in Florida, a state with the tenth highest prevalence of disability in the nation (13.4%).22 Few studies have examined the health care experiences of PWD, or the specific physical and communication-related barriers these individuals face when seeking health care services.5e10 This constitutes a critical gap in the literature, given the increased risk of chronic illness and health care needs faced by PWD. This cross-sectional observational study used a telephone-based random-digit dial survey to identify the frequency and type of physical and communication barriers PWD encounter when accessing health care services.
Methods Participant recruitment An observational, cross-sectional study was conducted that included a one-time random-digit dial telephone survey of Florida residents >18 years of age during 2013. Counties with older residents were oversampled in order to ensure a sufficient sample of participants reporting a disability. Study participants were contacted by telephone by a trained research assistant who administered a structured interview by reading survey questions and response options aloud. To accommodate Spanish speaking respondents, the survey was conducted in Spanish when necessary. Respondents were contacted until a sample size of 1500 was reached. This study was approved by the participating institution’s IRB. Survey development In 2012, the study team, in partnership with the Florida Disability and Health Program, developed the Persons with Disabilities Survey. The survey included a series of
-
(2016)
-
questions that assessed respondent disability status, health care barriers encountered during the prior 12 months, and sociodemographic factors, including race. Health care facility and clinical exam room accessibility questions consisted of items that matched requirements of ADA Standards for Accessible Design.23 Participants selected items from a multiple choice list to report ways in which their usual health care facility (including office equipment) or providers were less than fully accessible to them. The survey took 5e7 min to complete. Surveys were completed from 1429 survey respondents (42% response rate). Partially completed surveys were excluded from analysis. Disability measure Disability was assessed with two questions that followed CDC convention: ‘‘Are you limited in any way in any activities because of physical, mental, or emotional problems?’’ and ‘‘Do you now have any health problem that requires you to use special equipment, such as a cane, a special bed, or a special telephone?’’ A respondent who answered affirmatively to either or both questions was classified as having a disability. Barrier measures Respondents were asked to indicate whether they experienced barriers (yes/no) to care that spanned physical and communication-related domains in the 12 months prior to the survey. The eight barriers were adapted from the Behavioral Risk Factor Surveillance System, and asked respondents to indicate difficulty with the following: coordinating care, finding a provider that understood his/ her condition, communicating with his/her provider, getting a physical exam, getting on the exam table, getting into the exam room, getting into the building [of the health care facility], and obtaining transportation to the health care facility.24 Based on previous literature, four barrier subgroups were created to represent distinct, steps in obtaining care.11 The Physical Environment subgroup included obtaining transportation and getting into the health care facility. The Clinical Experience barrier group describes events occurring during the physical exam, such as getting into the exam room, on the exam table and getting a physical exam. The Communication and Knowledge subgroup included communicating with the provider and feeling as if the provider understood their medical condition. The fourth subgroup was Coordinating Care consisting of one question addressing whether respondents encountered difficulty coordinating care between providers. The survey also included questions about sociodemographic factors including age, gender, race and ethnicity, education level, household income and marital status. Respondent race and ethnicity was classified into two categories (white-non Hispanic, non-white) because the sample size for other racial/ethnic subgroups did not support reliable model estimation. Education level was reported as
ARTICLE IN PRESS S.E. Bauer et al. / Disability and Health Journal
some high school or less, high school graduate, some college, or college graduate or more. Marital status was categorized as married, divorced or widowed, separated, never married or member of an unmarried couple. Household income was reported in categories; !$20,000; $20,000e49,999; $50,000e99,999; and >$100,000. Statistical analysis Differences in participant sociodemographic factors, and experiences with accessibility barriers between persons with disabilities (PWD) and persons without disabilities (PWOD) were assessed with a chi-square and t-test for categorical and continuous variables, respectively. Multivariable logistic regression was used to assess the significance of the relationship between disability status and access to care barriers. Comparisons were deemed to be statistically significant at the p ! 0.05 significance level. All models were adjusted for respondent age, gender, race/ethnicity, marital status, educational attainment and household income. Results are presented as adjusted Odds Ratios (OR) with accompanying 95% confidence intervals (95% CI). Statistical analyses were conducted using STATA version 13.
-
(2016)
-
3
Table 1 Characteristics of PWD survey respondents (n 5 1429) PWOD (n 5 958)
PWD (n 5 471)
Respondent characteristics
%
%
Mean age (SD) Male Race and ethnicity White Black, Asian, Native Hawaiian, American, Indian, other Hispanic origin Education level Some high school or less High school graduate Some college College graduate Household income Less than $20,000 $20,000e$49,999 $50,000e$99,999 Over $100,000 Marital status Married Divorced Widowed/separated/never married/member of unmarried couple
61 (16.1) 48
68 (13.8) 47
87 13
86 14
7
6
3 21 30 47
7 26 30 37
13 33 32 22
29 38 26 8
56 13 31
48 17 36
Bold indicates statistically significant differences ( p ! 0.05).
Results One thousand four hundred and twenty-nine Florida residents participated in the survey. Forty-eight percent were male and 87% were white. Thirty-three percent of respondents (n 5 471) reported having a disability. PWD were significantly older (mean age 68 vs. 61) and had lower levels of income and education than PWOD ( p ! 0.05). PWD were also more likely to be divorced, widowed, separated or never married than PWOD (Table 1).
encountering a clinical experience barrier was significantly higher for PWD (OR 5 13.9 95% CI: 6.9, 13.9) compared to PWOD. In adjusted analyses, PWD had significantly higher odds of encountering a communication and knowledge barrier (OR 5 6.7 95% CI: 4.0, 11.3) compared to PWOD. The adjusted odds of reporting a barrier coordinating care was also significantly higher for PWD (OR 5 5.7 95% CI: 3.4, 9.6) compared to PWOD (Table 2).
Individual barriers to care Discussion Most persons without a disability did not report encountering any barriers to care in the past 12 months. Across all eight barriers, PWD were significantly more likely than PWOD to experience difficulty obtaining care, especially, obtaining transportation (12% and 1%, respectively), getting into the health care facility building (8% and 0.5%), getting on the exam table for a physical exam (20% and 1%), finding doctor that understands their health condition (14% and 2.4%), and coordinating care between providers (16% and 3%) (all comparisons, p ! 0.05). Barrier subgroups: disability status Based on a logistic regression model predicting an outcome of encountering a physical environment barrier (yes/no), the adjusted odds of encountering a physical environment barrier was higher for PWD (OR 5 16.6 95% CI: 7.9, 34.9) compared to PWOD. The adjusted odds of
This work confirms and extends research to date that has qualitatively assessed physical and communication barriers by examining experiences of a diverse, older group of PWD living in Florida, the third largest state in the US and a state Table 2 Adjusted odds ratios of encountering barriers to care (N 5 1429) PWD Barriers to care
Odds ratio
95% CI
Physical environment Clinical experience Communication and knowledge Coordinating care
16.6 13.9 6.7 5.7
(7.9, (6.9, (4.0, (3.4,
34.9) 27.9) 11.3) 9.6)
Bold indicates statistically significant difference between the PWD and PWD groups, p ! 0.05. Odds ratios are adjusted for income, age, race, ethnicity, education, income, race, gender and marital status.
ARTICLE IN PRESS 4
S.E. Bauer et al. / Disability and Health Journal
with a growing population of persons with disabilities. Our findings indicate that PWD face barriers across the continuum of health care seeking activities ranging from transportation to a health care facility, to being able to receive a physical exam, to finding and communicating effectively with health care providers. Previous studies have documented accessibility issues for health facilities, noting high rates of ADAnoncompliant examination tables and restrooms.25e27 In our study, PWD reported difficulty getting into a health care facility, into the exam room, and onto the exam table. We recommend that clinics conduct self-assessments based on the ADA technical guideline, Access To Medical Care For Individuals With Mobility Disabilities,23 and develop a plan for reducing physical barriers they may find. Beyond physical barriers to care, communication barriers must also be prioritized. In our study, PWD reported difficulty finding a provider that understood their condition and difficulty communicating with their provider. These results suggest that many PWD continue to perceive barriers to care in terms of provider attitudes and understanding of their disability. These findings demonstrate the importance of thorough communication between patients and provider. Training for clinical staff in assisting individuals with disabilities has been a recommendation of the Florida Office on Disability, including suggestions to incorporate disability into the medical school curriculum.19 Both actions have the potential to reduce barriers experienced by persons with disability over time. Providers are encouraged to take a proactive approach to discussing preventative care screenings with their patients who have a disability and help ensure that local referral and diagnostic centers are fully accessible. These recommendations may improve access to high quality care for all people with disabilities. Understanding barriers to care for PWD in underserved racial groups is key to developing successful interventions to improve health care access and outcomes for this group.28 Although barriers to health care have been studied separately for people with disabilities and for underserved racial groups, there has been much less attention to those who are members of both populations.28 Although we believe exploring the experiences of PWD who are also racial minorities is valuable, our survey was not adequately powered to observe differences among racial groups. Future research is needed to explore barriers among this subpopulation and should abide by new collection standards of race, ethnicity and disability as outlined by the Office of Minority Health.29 The generalizability of our findings may be affected by characteristics of our study sample. This is a crosssectional study; therefore, our findings cannot demonstrate causality, yet it is reasonable to infer that disability preceded barriers to care. These data come from a single state, where the experience of access barriers may differ relative to other places in the US. The reliance on this study
-
(2016)
-
on respondents with telephones may have resulted in an underestimate of the magnitude of access difficulties experienced by hard-of-hearing older adults.30 However, we believe our findings may be informative for other states as they prepare for the increasing number of older adults that is occurring nationally. Despite the limited sample size however, important differences between persons with and without disabilities were observed. Future studies should consider oversampling to ensure sufficient sample for subgroup analysis; more research examining barriers to health care among people with disabilities who are members of underserved racial/ethnic groups is needed.28
Conclusion Improving care experiences is critical for persons with disability who have the greatest need for access to consistent, high quality health care given their increased burden of morbidity and mortality. Given these risks, it is critical to understand and consider barriers these patients face when attempting to seek recommended care. Efforts to reduce physical barriers and improve communication between providers and PWD may improve functional status and quality of life for these individuals. References 1. Erickson W, Lee C, von Schrader S. 2012 Disability Status Report: United States. Ithaca, NY: Cornell University Employment and Disability Institute (EDI); 2014. 2. Institute of Medicine. The Future of Disability in America. Washington (DC): National Academies Press; 2007. 3. Alley D, Chang V. The changing relationship of obesity and disability, 1988e2004. JAMA. 2007;298(17):2020e2027. 4. Altman B, Bernstein A. Disability and Health in the United States, 2001e2005. Hyattsville (MD): National Center for Health Statistics; 2008. 5. Iezzoni LI. Eliminating health and health care disparities among the growing population of people with disabilities. Health Aff (Millwood). Oct 2011;30(10):1947e1954. 6. Lagu T, Hannon N, Rothberg M, et al. Access to subspecialty care for patients with mobility impairment. Ann Intern Med. 2013;58: 441e446. 7. Iezzoni LI, Frakt AB, Pizer SD. Uninsured persons with disability confront substantial barriers to health care services. Disabil Health J. Oct 2011;4(4):238e244. 8. Iezzoni LI, Kilbridge K, Park ER. Physical access barriers to care for diagnosis and treatment of breast cancer among women with mobility impairments. Oncol Nurs Forum. Nov 2010;37(6):711e717. 9. Iezzoni LI, McCarthy EP, Davis RB, Harris-David L, O’Day B. Use of screening and preventive services among women with disabilities. Am J Med Qual. Jul-Aug 2001;16(4):135e144. 10. Chan L, Doctor JN, MacLehose RF, et al. Do Medicare patients with disabilities receive preventive services? A population-based study. Arch Phys Med Rehabil. Jun 1999;80(6):642e646. 11. Stillman MD, Frost KL, Smalley C, Bertocci G, Williams S. Health care utilization and barriers experienced by individuals with spinal cord injury. Arch Phys Med. Rehabil. Jun 2014;95(6):1114e1126. 12. Harrington AL, Hirsch MA, Hammond FM, Norton HJ, Bockenek WL. Assessment of primary care services and perceived
ARTICLE IN PRESS S.E. Bauer et al. / Disability and Health Journal
13.
14.
15.
16.
17. 18. 19.
20.
21.
barriers to care in persons with disabilities. Am J Phys Med Rehabil. Oct 2009;88(10):852e863. Morrison EH, George V, Mosqueda L. Primary care for adults with physical disabilities: perceptions from consumer and provider focus groups. Fam Med. Oct 2008;40(9):645e651. Kroll T, Jones GC, Kehn M, Neri MT. Barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities: a qualitative inquiry. Health Soc Care Community. Jul 2006;14(4):284e293. Iezzoni LI, Killeen MB, O’Day BL. Rural residents with disabilities confront substantial barriers to obtaining primary care. Health Serv Res. Aug 2006;41(4 Pt 1):1258e1275. Veltman A, Stewart DE, Tardif GS, Branigan M. Perceptions of primary healthcare services among people with physical disabilities e part 1: access issues. MedGenMed. Apr 6 2001;3(2):18. DeJong G. Primary care for persons with disabilities: an overview of the problem. Am J Phys Med Rehabil. 1997;76(suppl 3):2e8. Gans B, Mann N, Becker B. Delivery of primary care to the physically challenged. Arch Phys Med Rehabil. 1993;74:S15eS19. Shapiro J, Mosqueda L, Botros D. A caring partnership Expectations of ageing persons with disabilities for their primary care doctors. Fam Pract. 2003;20(6). Becker H, Stuifbergen A, Tinkle M. Reproductive health care experiences of women with physical disabilities: a qualitative study. Arch Phys Med Rehabil. 1997;78:S26eS33. Scheer J, Kroll T, Neri M, et al. Access barriers for persons with disabilities: the consumer’s perspective. J Disab Policy Stud. 2003;13: 221e230.
-
(2016)
-
5
22. Erickson W, Lee C, von Schrader S. Disability Statistics from the 2012 American Community Survey (ACS), www.disabilitystatistics.org; 2014. Accessed 07.07.15. 23. Access to Medical Care for Individuals with Mobility Disabilities in 2010. Washington, DC: U.S. Department of Health and Human Services; 2010. 24. Agency for Healthcare Research and Quality. CAHPS Surveys and Tools to Advance Patient-centered Care, https://www.cahps.ahrq.gov/ about-cahps/index.html; 2015. 25. Grabois EW, Nosek MA, Rossi CD. Accessibility of primary care physicians’ offices for people with disabilities. An analysis of compliance with the Americans with Disabilities Act. Arch Fam Med. Jan-Feb 1999;8(1):44e51. 26. Sanchez J, Byfield G, Brown T, LaFavor K, Murphy D, Laud P. Perceived accessibility versus actual physical accessibility of healthcare facilities. Rehabil Nurs. 2000;25:6e9. 27. Winters J, Story M, Barnekow K, et al. Results on a National Survey on Accessibility of Medical Instrumentation for Consumers. Boca Raton: CRC Pr; 2007. 28. Peterson-Besse J, Walsh E, Horner-Johnson W, Goode T, Wheeler B. Barriers to health care among people with disabilities who are members of underserved racial/ethnic groups. Med Care. 2014;52(10). 29. U.S. Dept. of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Planning and Evaluation and Office of Minority Health. HHS Action Plan to Reduce Racial and Ethnic Health Disparities Implementation Progress Report. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation; 2015. 30. Pandhi N, Schumacher J, Barnett S, Smith M. Hearing loss and older adults’ perceptions of access to care. J Community Heath. 2011;36:748e755.
Disability and Health Journal
-
(2016)
-
www.disabilityandhealthjnl.com
Brief Report
Disability and physical and communication-related barriers to health care related services among Florida residents: A brief report Sarah E. Bauer, M.P.H.a,*, Jessica R. Schumacher, Ph.D., M.S.a, Allyson Hall, Ph.D., M.B.A., M.H.S.a, Nicole M. Marlow, Ph.D., M.S.P.H., B.S.a, Claudia Friedel, M.P.H.a,b, Danielle Scheer, B.A.a,b, and Susan Redmon, R.N., M.P.H.c a
Department of Health Services Research, Management and Policy, University of Florida, USA b Florida Disability and Health Program, USA c Florida Department of Health, Disability and Health Program, USA
Abstract Background: Research has not fully characterized barriers to health care faced by persons with disabilities (PWD) which constitutes a critical gap given the increased risk of chronic illness faced by PWD. Objective: To understand the current barriers to seeking health care-related services for PWD in Florida. Methods: The study was based on a random-digit-dial telephone interview survey of respondents aged 18 and over (n 5 1429). Multivariable logistic regression assessed the relationship between disability and physical and communication barriers. Results: One thousand four hundred and twenty-nine Florida residents participated in the survey. Thirty-three percent of respondents (n 5 471) reported having a disability. PWD were significantly older (mean age 68 vs. 61) and had lower levels of income and education than persons without disabilities (PWOD) ( p ! 0.05). In adjusted analyses, PWD had significantly higher odds of encountering a physical environment barrier (Odds Ratio [OR] 5 16.6 95% CI: 7.9, 34.9), a clinical experience barrier (OR 5 13.9 95% CI: 6.9, 27.9) a communication and knowledge barrier (OR 5 6.7 95% CI: 4.0, 11.3) and a barrier coordinating care (OR 5 5.7 95% CI: 3.4, 9.6) compared to persons without disabilities (PWOD). Conclusions: PWD disproportionately face health care access difficulties that can impede the receipt of high quality care within and between provider visits. Efforts to reduce physical barriers and improve communication between providers and PWD may improve functional status and quality of life for these patients. Ó 2016 Elsevier Inc. All rights reserved. Keywords: Access to health care; Physical barriers; Communication barriers; Disparities
In 2012, 38 million Americans (12 percent of the population) reported having one or more physical or emotional disabilities.1 An aging baby boomer population2 and rising prevalence rates of overweight and obesity3 will expand the number of Americans living with disabilities in coming
Prior presentation: This manuscript was presented as an oral presentation at the APHA Annual Research Meeting in November, 2014. Conflicts of interest and source of funding: To the best of our knowledge, no conflict of interest, financial or other, exists. The Florida Disability and Health Program is funded by the National Center for Birth Defects and Developmental Disability, Disability and Health Team: Centers for Disease Control and Prevention, Atlanta, GA (Grant: U59DD000992-02). * Corresponding author. Department of Health Services Research, Management & Policy, University of Florida, P.O. Box 100195, 1225 Center Drive, Gainesville, FL 32611-0195, USA. Tel.: þ1 443 350 6580. E-mail address: [email protected] (S.E. Bauer). 1936-6574/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2016.03.001
decades. Persons with disabilities (PWD) are burdened by social and environmental disadvantages, including lower educational levels, lower incomes and higher unemployment rates.1 In addition to social and environmental disadvantages, PWD are more likely to report being in fair or poor health, using tobacco, and forgoing physical activity.4 This reality poses a major challenge to the health care community striving to address the health care needs of this population. Despite the passage of the Americans with Disabilities Act (ADA) over two decades ago, many barriers to care for PWD remain in the United States health care system, rendering PWD particularly susceptible to receiving substandard health care.5 Persistent challenges in the form of physical, policy, procedural, and attitudinal barriers5 are cited when PWD attempt to access health care services.5e10 Barriers throughout the health system are created by
ARTICLE IN PRESS 2
S.E. Bauer et al. / Disability and Health Journal
inaccessible equipment and facilities, lack of training for health care professionals and inability to provide health communication using accessible modalities (e.g., large print, audio, Braille).5 Commonly cited physical barriers include lack of transportation and physical inaccessibility of the facility, exam rooms, and equipment.8,11e16 Additionally, prior research has demonstrated that PWD are more likely to report issues with provider communication (e.g., doctor in hurry, not explaining medical problems sufficiently, acting in condescending manner) and providers lacking of knowledge about disabilities.17e19 PWD often report the need to teach providers about their disability and have reported not having all of their needs met during the visit.20,21 Such physical and provider-related barriers result in more difficulty accessing health care services for PWD compared to persons without disabilities (PWOD).4 In line with the Healthy People 2020 vision, the objective of this work was to identify physical and communication-related barriers PWD encounter when accessing health care services. Our analysis specifically addressed this objective in a population of PWD living in Florida, a state with the tenth highest prevalence of disability in the nation (13.4%).22 Few studies have examined the health care experiences of PWD, or the specific physical and communication-related barriers these individuals face when seeking health care services.5e10 This constitutes a critical gap in the literature, given the increased risk of chronic illness and health care needs faced by PWD. This cross-sectional observational study used a telephone-based random-digit dial survey to identify the frequency and type of physical and communication barriers PWD encounter when accessing health care services.
Methods Participant recruitment An observational, cross-sectional study was conducted that included a one-time random-digit dial telephone survey of Florida residents >18 years of age during 2013. Counties with older residents were oversampled in order to ensure a sufficient sample of participants reporting a disability. Study participants were contacted by telephone by a trained research assistant who administered a structured interview by reading survey questions and response options aloud. To accommodate Spanish speaking respondents, the survey was conducted in Spanish when necessary. Respondents were contacted until a sample size of 1500 was reached. This study was approved by the participating institution’s IRB. Survey development In 2012, the study team, in partnership with the Florida Disability and Health Program, developed the Persons with Disabilities Survey. The survey included a series of
-
(2016)
-
questions that assessed respondent disability status, health care barriers encountered during the prior 12 months, and sociodemographic factors, including race. Health care facility and clinical exam room accessibility questions consisted of items that matched requirements of ADA Standards for Accessible Design.23 Participants selected items from a multiple choice list to report ways in which their usual health care facility (including office equipment) or providers were less than fully accessible to them. The survey took 5e7 min to complete. Surveys were completed from 1429 survey respondents (42% response rate). Partially completed surveys were excluded from analysis. Disability measure Disability was assessed with two questions that followed CDC convention: ‘‘Are you limited in any way in any activities because of physical, mental, or emotional problems?’’ and ‘‘Do you now have any health problem that requires you to use special equipment, such as a cane, a special bed, or a special telephone?’’ A respondent who answered affirmatively to either or both questions was classified as having a disability. Barrier measures Respondents were asked to indicate whether they experienced barriers (yes/no) to care that spanned physical and communication-related domains in the 12 months prior to the survey. The eight barriers were adapted from the Behavioral Risk Factor Surveillance System, and asked respondents to indicate difficulty with the following: coordinating care, finding a provider that understood his/ her condition, communicating with his/her provider, getting a physical exam, getting on the exam table, getting into the exam room, getting into the building [of the health care facility], and obtaining transportation to the health care facility.24 Based on previous literature, four barrier subgroups were created to represent distinct, steps in obtaining care.11 The Physical Environment subgroup included obtaining transportation and getting into the health care facility. The Clinical Experience barrier group describes events occurring during the physical exam, such as getting into the exam room, on the exam table and getting a physical exam. The Communication and Knowledge subgroup included communicating with the provider and feeling as if the provider understood their medical condition. The fourth subgroup was Coordinating Care consisting of one question addressing whether respondents encountered difficulty coordinating care between providers. The survey also included questions about sociodemographic factors including age, gender, race and ethnicity, education level, household income and marital status. Respondent race and ethnicity was classified into two categories (white-non Hispanic, non-white) because the sample size for other racial/ethnic subgroups did not support reliable model estimation. Education level was reported as
ARTICLE IN PRESS S.E. Bauer et al. / Disability and Health Journal
some high school or less, high school graduate, some college, or college graduate or more. Marital status was categorized as married, divorced or widowed, separated, never married or member of an unmarried couple. Household income was reported in categories; !$20,000; $20,000e49,999; $50,000e99,999; and >$100,000. Statistical analysis Differences in participant sociodemographic factors, and experiences with accessibility barriers between persons with disabilities (PWD) and persons without disabilities (PWOD) were assessed with a chi-square and t-test for categorical and continuous variables, respectively. Multivariable logistic regression was used to assess the significance of the relationship between disability status and access to care barriers. Comparisons were deemed to be statistically significant at the p ! 0.05 significance level. All models were adjusted for respondent age, gender, race/ethnicity, marital status, educational attainment and household income. Results are presented as adjusted Odds Ratios (OR) with accompanying 95% confidence intervals (95% CI). Statistical analyses were conducted using STATA version 13.
-
(2016)
-
3
Table 1 Characteristics of PWD survey respondents (n 5 1429) PWOD (n 5 958)
PWD (n 5 471)
Respondent characteristics
%
%
Mean age (SD) Male Race and ethnicity White Black, Asian, Native Hawaiian, American, Indian, other Hispanic origin Education level Some high school or less High school graduate Some college College graduate Household income Less than $20,000 $20,000e$49,999 $50,000e$99,999 Over $100,000 Marital status Married Divorced Widowed/separated/never married/member of unmarried couple
61 (16.1) 48
68 (13.8) 47
87 13
86 14
7
6
3 21 30 47
7 26 30 37
13 33 32 22
29 38 26 8
56 13 31
48 17 36
Bold indicates statistically significant differences ( p ! 0.05).
Results One thousand four hundred and twenty-nine Florida residents participated in the survey. Forty-eight percent were male and 87% were white. Thirty-three percent of respondents (n 5 471) reported having a disability. PWD were significantly older (mean age 68 vs. 61) and had lower levels of income and education than PWOD ( p ! 0.05). PWD were also more likely to be divorced, widowed, separated or never married than PWOD (Table 1).
encountering a clinical experience barrier was significantly higher for PWD (OR 5 13.9 95% CI: 6.9, 13.9) compared to PWOD. In adjusted analyses, PWD had significantly higher odds of encountering a communication and knowledge barrier (OR 5 6.7 95% CI: 4.0, 11.3) compared to PWOD. The adjusted odds of reporting a barrier coordinating care was also significantly higher for PWD (OR 5 5.7 95% CI: 3.4, 9.6) compared to PWOD (Table 2).
Individual barriers to care Discussion Most persons without a disability did not report encountering any barriers to care in the past 12 months. Across all eight barriers, PWD were significantly more likely than PWOD to experience difficulty obtaining care, especially, obtaining transportation (12% and 1%, respectively), getting into the health care facility building (8% and 0.5%), getting on the exam table for a physical exam (20% and 1%), finding doctor that understands their health condition (14% and 2.4%), and coordinating care between providers (16% and 3%) (all comparisons, p ! 0.05). Barrier subgroups: disability status Based on a logistic regression model predicting an outcome of encountering a physical environment barrier (yes/no), the adjusted odds of encountering a physical environment barrier was higher for PWD (OR 5 16.6 95% CI: 7.9, 34.9) compared to PWOD. The adjusted odds of
This work confirms and extends research to date that has qualitatively assessed physical and communication barriers by examining experiences of a diverse, older group of PWD living in Florida, the third largest state in the US and a state Table 2 Adjusted odds ratios of encountering barriers to care (N 5 1429) PWD Barriers to care
Odds ratio
95% CI
Physical environment Clinical experience Communication and knowledge Coordinating care
16.6 13.9 6.7 5.7
(7.9, (6.9, (4.0, (3.4,
34.9) 27.9) 11.3) 9.6)
Bold indicates statistically significant difference between the PWD and PWD groups, p ! 0.05. Odds ratios are adjusted for income, age, race, ethnicity, education, income, race, gender and marital status.
ARTICLE IN PRESS 4
S.E. Bauer et al. / Disability and Health Journal
with a growing population of persons with disabilities. Our findings indicate that PWD face barriers across the continuum of health care seeking activities ranging from transportation to a health care facility, to being able to receive a physical exam, to finding and communicating effectively with health care providers. Previous studies have documented accessibility issues for health facilities, noting high rates of ADAnoncompliant examination tables and restrooms.25e27 In our study, PWD reported difficulty getting into a health care facility, into the exam room, and onto the exam table. We recommend that clinics conduct self-assessments based on the ADA technical guideline, Access To Medical Care For Individuals With Mobility Disabilities,23 and develop a plan for reducing physical barriers they may find. Beyond physical barriers to care, communication barriers must also be prioritized. In our study, PWD reported difficulty finding a provider that understood their condition and difficulty communicating with their provider. These results suggest that many PWD continue to perceive barriers to care in terms of provider attitudes and understanding of their disability. These findings demonstrate the importance of thorough communication between patients and provider. Training for clinical staff in assisting individuals with disabilities has been a recommendation of the Florida Office on Disability, including suggestions to incorporate disability into the medical school curriculum.19 Both actions have the potential to reduce barriers experienced by persons with disability over time. Providers are encouraged to take a proactive approach to discussing preventative care screenings with their patients who have a disability and help ensure that local referral and diagnostic centers are fully accessible. These recommendations may improve access to high quality care for all people with disabilities. Understanding barriers to care for PWD in underserved racial groups is key to developing successful interventions to improve health care access and outcomes for this group.28 Although barriers to health care have been studied separately for people with disabilities and for underserved racial groups, there has been much less attention to those who are members of both populations.28 Although we believe exploring the experiences of PWD who are also racial minorities is valuable, our survey was not adequately powered to observe differences among racial groups. Future research is needed to explore barriers among this subpopulation and should abide by new collection standards of race, ethnicity and disability as outlined by the Office of Minority Health.29 The generalizability of our findings may be affected by characteristics of our study sample. This is a crosssectional study; therefore, our findings cannot demonstrate causality, yet it is reasonable to infer that disability preceded barriers to care. These data come from a single state, where the experience of access barriers may differ relative to other places in the US. The reliance on this study
-
(2016)
-
on respondents with telephones may have resulted in an underestimate of the magnitude of access difficulties experienced by hard-of-hearing older adults.30 However, we believe our findings may be informative for other states as they prepare for the increasing number of older adults that is occurring nationally. Despite the limited sample size however, important differences between persons with and without disabilities were observed. Future studies should consider oversampling to ensure sufficient sample for subgroup analysis; more research examining barriers to health care among people with disabilities who are members of underserved racial/ethnic groups is needed.28
Conclusion Improving care experiences is critical for persons with disability who have the greatest need for access to consistent, high quality health care given their increased burden of morbidity and mortality. Given these risks, it is critical to understand and consider barriers these patients face when attempting to seek recommended care. Efforts to reduce physical barriers and improve communication between providers and PWD may improve functional status and quality of life for these individuals. References 1. Erickson W, Lee C, von Schrader S. 2012 Disability Status Report: United States. Ithaca, NY: Cornell University Employment and Disability Institute (EDI); 2014. 2. Institute of Medicine. The Future of Disability in America. Washington (DC): National Academies Press; 2007. 3. Alley D, Chang V. The changing relationship of obesity and disability, 1988e2004. JAMA. 2007;298(17):2020e2027. 4. Altman B, Bernstein A. Disability and Health in the United States, 2001e2005. Hyattsville (MD): National Center for Health Statistics; 2008. 5. Iezzoni LI. Eliminating health and health care disparities among the growing population of people with disabilities. Health Aff (Millwood). Oct 2011;30(10):1947e1954. 6. Lagu T, Hannon N, Rothberg M, et al. Access to subspecialty care for patients with mobility impairment. Ann Intern Med. 2013;58: 441e446. 7. Iezzoni LI, Frakt AB, Pizer SD. Uninsured persons with disability confront substantial barriers to health care services. Disabil Health J. Oct 2011;4(4):238e244. 8. Iezzoni LI, Kilbridge K, Park ER. Physical access barriers to care for diagnosis and treatment of breast cancer among women with mobility impairments. Oncol Nurs Forum. Nov 2010;37(6):711e717. 9. Iezzoni LI, McCarthy EP, Davis RB, Harris-David L, O’Day B. Use of screening and preventive services among women with disabilities. Am J Med Qual. Jul-Aug 2001;16(4):135e144. 10. Chan L, Doctor JN, MacLehose RF, et al. Do Medicare patients with disabilities receive preventive services? A population-based study. Arch Phys Med Rehabil. Jun 1999;80(6):642e646. 11. Stillman MD, Frost KL, Smalley C, Bertocci G, Williams S. Health care utilization and barriers experienced by individuals with spinal cord injury. Arch Phys Med. Rehabil. Jun 2014;95(6):1114e1126. 12. Harrington AL, Hirsch MA, Hammond FM, Norton HJ, Bockenek WL. Assessment of primary care services and perceived
ARTICLE IN PRESS S.E. Bauer et al. / Disability and Health Journal
13.
14.
15.
16.
17. 18. 19.
20.
21.
barriers to care in persons with disabilities. Am J Phys Med Rehabil. Oct 2009;88(10):852e863. Morrison EH, George V, Mosqueda L. Primary care for adults with physical disabilities: perceptions from consumer and provider focus groups. Fam Med. Oct 2008;40(9):645e651. Kroll T, Jones GC, Kehn M, Neri MT. Barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities: a qualitative inquiry. Health Soc Care Community. Jul 2006;14(4):284e293. Iezzoni LI, Killeen MB, O’Day BL. Rural residents with disabilities confront substantial barriers to obtaining primary care. Health Serv Res. Aug 2006;41(4 Pt 1):1258e1275. Veltman A, Stewart DE, Tardif GS, Branigan M. Perceptions of primary healthcare services among people with physical disabilities e part 1: access issues. MedGenMed. Apr 6 2001;3(2):18. DeJong G. Primary care for persons with disabilities: an overview of the problem. Am J Phys Med Rehabil. 1997;76(suppl 3):2e8. Gans B, Mann N, Becker B. Delivery of primary care to the physically challenged. Arch Phys Med Rehabil. 1993;74:S15eS19. Shapiro J, Mosqueda L, Botros D. A caring partnership Expectations of ageing persons with disabilities for their primary care doctors. Fam Pract. 2003;20(6). Becker H, Stuifbergen A, Tinkle M. Reproductive health care experiences of women with physical disabilities: a qualitative study. Arch Phys Med Rehabil. 1997;78:S26eS33. Scheer J, Kroll T, Neri M, et al. Access barriers for persons with disabilities: the consumer’s perspective. J Disab Policy Stud. 2003;13: 221e230.
-
(2016)
-
5
22. Erickson W, Lee C, von Schrader S. Disability Statistics from the 2012 American Community Survey (ACS), www.disabilitystatistics.org; 2014. Accessed 07.07.15. 23. Access to Medical Care for Individuals with Mobility Disabilities in 2010. Washington, DC: U.S. Department of Health and Human Services; 2010. 24. Agency for Healthcare Research and Quality. CAHPS Surveys and Tools to Advance Patient-centered Care, https://www.cahps.ahrq.gov/ about-cahps/index.html; 2015. 25. Grabois EW, Nosek MA, Rossi CD. Accessibility of primary care physicians’ offices for people with disabilities. An analysis of compliance with the Americans with Disabilities Act. Arch Fam Med. Jan-Feb 1999;8(1):44e51. 26. Sanchez J, Byfield G, Brown T, LaFavor K, Murphy D, Laud P. Perceived accessibility versus actual physical accessibility of healthcare facilities. Rehabil Nurs. 2000;25:6e9. 27. Winters J, Story M, Barnekow K, et al. Results on a National Survey on Accessibility of Medical Instrumentation for Consumers. Boca Raton: CRC Pr; 2007. 28. Peterson-Besse J, Walsh E, Horner-Johnson W, Goode T, Wheeler B. Barriers to health care among people with disabilities who are members of underserved racial/ethnic groups. Med Care. 2014;52(10). 29. U.S. Dept. of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Planning and Evaluation and Office of Minority Health. HHS Action Plan to Reduce Racial and Ethnic Health Disparities Implementation Progress Report. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation; 2015. 30. Pandhi N, Schumacher J, Barnett S, Smith M. Hearing loss and older adults’ perceptions of access to care. J Community Heath. 2011;36:748e755.