AIDS RESEARCH AND HUMAN RETROVIRUSES Volume 31, Number 6, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/aid.2014.0332
CLINICAL PERSPECTIVE
HIV-Infected Patient Knowledge, Attitudes, and Beliefs Regarding the Affordable Care Act Irina Rozin,1 Harlan Sayles,2 Matthew J. Anderson,2 Renae Furl,3 Jim P. Stimpson,2 Susan Swindells,3 and Sara H. Bares 3
Abstract
We evaluated patient knowledge, attitudes, and beliefs regarding changes present with the Affordable Care Act (ACA). HIV-infected adults attending an academic medical center HIV clinic in Omaha, Nebraska were asked to complete a self-administered survey between November 2013 and March 2014. Information collected included demographics, knowledge regarding healthcare reform policies, as well as attitudes and beliefs regarding the potential impact of the ACA on patient access to healthcare. Basic descriptive statistics were used to assess demographic characteristics of respondents and outcomes of interest. Chi-square tests were used for comparisons of interest among participants; some trends were evaluated with Cochran–Armitage trend tests. Four hundred and six patients completed the questionnaire. Of the respondents 90% were between the ages of 27 and 64, 61% were white, 27% had no health insurance, and 21% reported that they felt they had or will eventually benefit from the ACA. The proportion who responded ‘‘I don’t know’’ to this question decreased over the study period ( p = 0.036). Overall, 57% reported they do not believe that they are informed enough to make decisions about the ACA. In answering four knowledge-based questions, only 3% answered all of them correctly. Knowledge about the ACA was significantly associated with perception of benefit ( p = 0.018). HIV-infected patients are not well informed about the ACA and few perceive that they will benefit from healthcare reform. Targeted education and outreach are necessary to reduce the knowledge gap for this population that stands to benefit greatly from the ACA.
Introduction
S
uccessful treatment of HIV disease requires access to specialized healthcare, periodic laboratory monitoring, and uninterrupted access to costly antiretroviral therapy. Insurance mitigates these costs, but people living with HIV/ AIDS in the United States have historically had a difficult time obtaining private health insurance.1 In 2010, it was estimated that 17% of HIV-infected patients had private insurance, compared to 65% of all Americans.1,2 While Medicaid is the most common source of coverage for HIVinfected patients, as many as 30% are uninsured.1 The implementation of the Patient Protection and Affordable Care Act (ACA) has the potential to decrease the disparity in access to health insurance faced by many HIV-infected patients. Under the law, insurers are not allowed to deny coverage based on health status or preexisting conditions, which has been a long-standing barrier to health insurance for HIV-infected patients.1 The new insurance marketplaces established under the ACA provide coverage to individuals who do not have access to employer-based coverage and also en-
able continuous coverage after separating from an employer. The ACA also bans annual and lifetime limits on insurance coverage and places an annual cap on out-of-pocket costs, all of which enable insurance coverage to be more affordable. With Medicaid expansion, an ACA initiative that was implemented in many states on January 1, 2014, it was anticipated that as many as 115,000 previously uninsured, lowincome HIV-infected patients would qualify for Medicaid.3 Nebraska, like 21 other states, has not moved forward with Medicaid expansion at this time.4 Additionally, 22% of recipients of the Ryan White funded AIDS Drug Assistance Programs (ADAP) nationwide may now qualify for subsidized private insurance.5 Importantly, studies have shown a positive correlation between insurance coverage and survival among HIV-infected patients.6 Despite its potential to close healthcare gaps in the United States, public opinion of the ACA has been divided. Many consumers of healthcare services are unaware of the specific changes the ACA brings and are wary of its direct impact on their care. For example, a recent survey conducted by the Kaiser Family Foundation (KFF) prior to the implementation of the
1
College of Medicine, 2College of Public Health, 3Division of Infectious Diseases, University of Nebraska Medical Center, Omaha, Nebraska.
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ACA found that 4 out of 10 Americans with a preexisting condition were uninformed of the changes to come with the ACA.7 Many studies have been conducted to determine the knowledge, attitudes, and beliefs of American people regarding healthcare reform.7,8 Additional studies have evaluated both provider and patient perspectives on the ACA.9–12 This study sought to characterize knowledge, attitudes, and beliefs of HIV-infected patients regarding the ACA and was implemented at the time the initial provisions of the ACA were being rolled out and thus when patients had the opportunity to enroll in insurance plans through the marketplace.
ROZIN ET AL.
Primary outcomes of interest were perception of benefit from healthcare reform and knowledge (both perceived and objective) related to healthcare reform. Subgroups included age groups, education level, employment status, insurance status, and income. Chi-square tests were performed to assess differences in perception of benefit by demographic characteristics of respondents and knowledge levels. Cochrane– Armitage trend tests were performed to determine if there was a difference in trend knowledge by perception of benefit and a difference in perception of benefit from healthcare reform over time. All analyses were conducted in SAS version 9.3 (The SAS Institute, Cary, NC).
Materials and Methods Environment
The study was conducted at the University of Nebraska Medical Center (UNMC) HIV clinic located in Omaha, Nebraska. It is the only dedicated HIV facility in the region and serves approximately 1,200 patients. Study sample and data collection
English-speaking adult men and women attending the UNMC HIV clinic were surveyed between November 18, 2013 and March 31, 2014. All eligible patients were invited to participate as they attended regular clinic visits; there was no formal selection process. A sample size of 371 was selected to allow for the estimation of confidence intervals for proportions with a precision of 5% or smaller and surveys were administered until we reached our goal sample size. The study was approved by the Institutional Review Board at the University of Nebraska. Exemption from written informed consent was granted and a cover letter informing participants about the study was attached to each survey. Survey instrument
A 23-item survey consisting of closed-ended questions was developed using input from local experts as well as previous Kaiser Family Foundation Health Tracking Polls. Questions were modified to a third- to ninth-grade reading level using the Flesch–Kincaid grade level readability index. The survey was piloted by four HIV team members and modified based on their feedback. The purpose of the survey was to gauge patient knowledge and attitudes toward the ACA and included questions to assess perceived knowledge as well as objective measures of knowledge related to key provisions afforded by the ACA. The survey also included patient demographics, source of information related to healthcare reform, and source of funding for healthcare. Attitudes toward the ACA were assessed by asking respondents whether they believed that they had or would benefit from healthcare reform as well as whether they anticipated changes in personal costs of healthcare, quality of healthcare, and in their ability to get and keep insurance. Statistical analysis
Basic descriptive statistics (frequencies and percentages) were calculated for all survey questions. Demographic characteristics of respondents were examined for the entire sample while the primary outcomes of interest were examined both overall and by subgroups within the sample.
Results
A total of 406 participants completed the survey. Demographics of the survey respondents are outlined in Table 1. The majority of respondents were between the ages of 27 and 64 years (90%) and most were white (61%). Most (75%) completed high school or higher and over half (61%) reported either full or part-time employment. Half of the survey respondents (50%) reported an annual income of less than $20,000. Slightly over one-quarter (27%) of respondents were uninsured. Knowledge
When asked whether they believed they had enough information about the ACA to make informed decisions, 118
Table 1. Demographics (N = 406) Characteristic Age group 19–26 27–59 60 or older Race/ethnicity NH white NH black Hispanic Other Education Grades 1–8 or no formal schooling Grades 9–12, HS diploma or GED Some college or 2-year associate degree Bachelor’s or greater Household income Less than $20,000 $20,000–$50,000 $50,000 or more Employment status Employed FT/PT Unemployed Student/retired/disabled/homemaker Insurance status Private – other Medicaid and/or Medicare Uninsured Don’t know or no answer
n (%) 29 (7) 338 (86) 24 (6) 236 99 25 29
(61) (25) (6) (7)
7 129 156 100
(2) (33) (40) (26)
188 (50) 118 (32) 67 (18) 238 (62) 53 (14) 95 (25) 181 92 109 24
(45) (23) (27) (6)
NH, non-Hispanic; GED, General Educational Development; HS, high school; FT, full time; PT, part time.
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(29%) answered ‘‘yes’’ whereas 283 (71%) answered ‘‘no’’ or ‘‘I don’t know.’’ Four questions assessed patient knowledge of the ACA. Slightly more than half (53%) of respondents did not know that the ACA was created to provide financial help to low-income and middle-income Americans in need of health coverage. Over half (62%) of the respondents were not aware of the ACA provision that eliminated preexisting condition restrictions. A similar number of respondents (63%) were not sure about Nebraska’s decision not to expand Medicaid. Lastly, only 97 (25%) respondents knew that the Ryan White Care Program would not be eliminated with implementation of the ACA. Overall, 215 (62%) of the respondents answered only zero or one knowledge question correctly and only nine (3%) respondents answered all four questions correctly. Knowledge was highest among nonHispanic whites ( p = 0.007), those with Bachelor’s degree or higher ( p < 0.001), the employed ( p = 0.006), and those with private insurance ( p = 0.002) (Table 2).
35%, social networking websites by 32%, and friends or family by 32%. The least common source of information reported was mail (14%) (Fig. 1). Respondents reported that the one source they trusted most was doctor’s office staff (53%), followed by television (16%) (Fig. 1).
Knowledge sources
When asked where they turned to for information regarding healthcare reform (select all that apply), television was cited most frequently (59%), closely followed by doctor’s office staff (50%). Newspapers or magazines were cited by
Attitudes and beliefs
When asked whether they had benefited or would benefit from healthcare reform 85 (21%) answered yes whereas 315 (79%) answered ‘‘no’’ or ‘‘I don’t know.’’ Only 137 (36%) respondents believed that their ability to obtain and keep health insurance would improve with healthcare reform while 82 (21%) believed it would get worse and 164 (43%) believed it would not change. When asked how they believed healthcare reform would affect the quality of their healthcare, the majority (60%) of respondents thought it would stay the same whereas the rest were split equally in that 20% thought it would improve and 20% thought it would get worse. When asked to rate the importance of various healthcare and health insurance factors on a scale of very important to not at all important, the highest rated factors were, in order of frequency, (1) the cost of prescriptions/medications (93% rated this ‘‘very important’’), (2) the ability to see physicians or specialists without extra cost (89% rated this ‘‘very
Table 2. Knowledge by Demographics (N = 406) Knowledge questions answered correctly Characteristic Age group 19–26 27–59 60 or older Race/ethnicity NH white NH black Hispanic Other Education Grades 1–8 or no formal schooling Grades 9–12, HS diploma or GED Some college or 2-year associate degree Bachelor’s or greater Household income Less than $20,000 $20,000–$50,000 $50,000 or more Employment status Employed FT/PT Unemployed Student/retired/disabled/homemaker Insurance status Private – other Medicaid – other Medicare – other Uninsured Don’t know or no answer a
0
1
2
3
4
11 (39) 99 (33) 6 (30)
6 (21) 85 (29) 6 (30)
5 (18) 62 (21) 3 (15)
5 (18) 42 (14) 5 (25)
1 (4) 8 (3) 0 (0)
56 41 12 7
(28) (44) (48) (29)
48 30 8 11
(24) (32) (32) (46)
51 15 2 3
(25) (16) (8) (13)
37 8 3 3
(18) (9) (12) (13)
9 0 0 0
(4) (0) (0) (0)
2 58 46 11
(29) (52) (33) (13)
3 32 43 19
(43) (29) (31) (22)
1 15 29 26
(14) (13) (21) (30)
1 5 19 27
(14) (4) (14) (31)
0 2 2 5
(0) (2) (1) (6)
c
0.740b
0.007c
< 0.001b
72 (43) 27 (27) 5 (8)
46 (27) 31 (31) 18 (30)
29 (17) 23 (23) 17 (28)
18 (11) 15 (15) 18 (30)
3 (2) 4 (4) 2 (3)
< 0.001b
53 (25) 19 (40) 42 (51)
65 (31) 12 (26) 19 (23)
51 (24) 10 (21) 10 (12)
35 (17) 6 (13) 11 (13)
8 (4) 0 (0) 1 (1)
0.006c
33 34 10 36 5
48 12 8 28 1
43 6 4 17 3
32 3 2 13 2
6 0 0 3 0
0.002c
(20) (62) (42) (37) (45)
(30) (22) (33) (29) (9)
(27) (11) (17) (18) (27)
(20) (5) (8) (13) (18)
Monte Carlo estimations of exact p-values. Mantel–Haenszel chi-square test. Pearson chi-square test. NH, non-Hispanic; GED, General Educational Development; HS, high school; FT, full time; PT, part time. b
p-valuea
(4) (0) (0) (3) (0)
584
FIG. 1. Most common and most trusted sources of information regarding healthcare reform. important’’), and (3) the ability to go to any hospital without extra cost (84% rated this ‘‘very important’’) (Fig. 2). Over one-third of patients (37%) reported believing they could not change jobs due to fear of change in health insurance. One-fifth of respondents reported that unaffordable copayments had prevented them from taking HIV medications at some point in the past. Perception of benefit according to knowledge, demographics, and month of survey completion
Those who reported not knowing whether they had benefited or would benefit from the ACA were significantly less
ROZIN ET AL.
knowledgeable about the ACA than those who reported knowing whether they had benefited or would benefit from the ACA ( p < 0.001) (Fig. 3). An analysis of perception of benefit in relation to age group, race/ethnicity, education, household income, employment status, and insurance status found significant associations between perception of benefit and the latter four groups whereas no association was found between perception of benefit from the ACA and age or race/ ethnicity (Table 3). Those with an education level equivalent to grade 8 or less reported a greater perception of benefit than respondents in any higher education category ( p < 0.001). Respondents who reported an annual income of less than $20,000 were less likely to report not benefiting from healthcare reform than respondents with incomes between $20,000 and $50,000 as well as those with incomes greater than $50,000 (11% versus 28% and 37%, respectively; p < 0.001). Additionally, those who were employed generally believed that they had benefited less from the ACA than those who were unemployed or not in the labor force ( p < 0.001). Finally, an analysis of perception of benefit in relation to insurance group demonstrated that respondents with private insurance were less likely to report ‘‘not knowing’’ whether they had or would benefit from the ACA than respondents in all other insurance categories ( p < 0.001). There was no increase in perceived knowledge over the course of the study period, but the percentage of respondents who believed that they either would or would not benefit from healthcare reform (‘‘yes/no’’ versus ‘‘I don’t know’’) did show a statistically significant increase over the 5-month study period ( p = 0.036). Discussion
Despite the best efforts of the clinic staff to provide relevant information, few HIV-infected patients attending the UNMC HIV clinic believed they had enough information about the ACA and an even smaller percentage believed that they were likely to benefit from the ACA. The lack of perceived benefit by respondents is surprising, considering that
FIG. 2. Frequency of healthcare factors reported as ‘‘very important’’ to respondents.
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FIG. 3. Respondent perception of benefit from healthcare reform by knowledge level.
people living with HIV disease generally stand to benefit greatly from the law’s provisions. HIV-infected patients by definition have a preexisting condition and the ACA prohibited insurance companies from denying coverage because of preexisting conditions in January 2014. Additionally, the provision of subsidized private health insurance for those with low income and the expansion of Medicaid are predicted to positively impact thousands of people living with HIV.13
We found that the lack of knowledge regarding the provisions of the ACA appeared to be contributing to low levels of perceived benefit. The reasons for lack of knowledge are not clear, but this was noted in spite of many efforts on behalf of outreach workers and clinic case managers to offer educational sessions regarding the ACA to our patients. It is also possible that respondents do not believe the ACA addresses the factors they most value in health insurance.
Table 3. Perception of Benefit from the Affordable Care Act by Demographics (N = 406) Have you benefited or will you benefit from healthcare reform? Characteristic Age group 19–26 27–59 60 or older Race/Ethnicity NH white NH black Hispanic Other Education Grades 1–8 or no formal schooling Grades 9–12, HS diploma or GED Some college or 2-year associate degree Bachelor’s or greater Household income Less than $20,000 $20,000–$50,000 $50,000 or more Employment status Employed FT/PT Unemployed Student/retired/disabled/homemaker Insurance status Private – other Medicaid – Medicaid Uninsured Don’t know or no answer
Yes
No
I don’t know
6 (21) 76 (23) 2 (8)
7 (24) 65 (19) 9 (38)
16 (55) 196 (58) 13 (54)
53 18 5 8
(22) (18) (20) (29)
49 22 3 6
(21) (22) (12) (21)
134 59 17 14
(57) (60) (68) (50)
4 20 30 30
(57) (16) (19) (30)
1 17 35 29
(14) (13) (22) (29)
2 91 91 41
(29) (71) (58) (41)
p-valuea
0.199
0.794
< 0.001
40 (21) 24 (20) 17 (25)
20 (11) 33 (28) 25 (37)
127 (68) 61 (52) 25 (37)
< 0.001
42 (18) 16 (30) 25 (26)
65 (27) 4 (8) 12 (13)
130 (55) 33 (62) 58 (61)
< 0.001
42 18 22 3
56 12 12 3
(23) (37) (20) (16)
(31) (27) (11) (16)
82 62 75 13
(46) (136) (69) (68)
a Monte Carlo estimations of exact p-values from Pearson chi-square test. NH, non-Hispanic; GED, General Educational Development; HS, high school; FT, full time; PT, part time.
< 0.001
586
When asked to rate the importance of health insurance factors, respondents rated cost of prescription medications most highly, but the ACA does not directly reduce costs of prescriptions for many patients. Additionally, less than a fifth of survey respondents thought that unaffordable copayments prevented them from taking their antiretroviral medications at any given point, so it may be possible that this is rated highly yet not seen as a major barrier to healthcare. Twenty-seven percent of uninsured respondents were enrolled in a Ryan White-funded program. Together with recipients of Medicaid and or Medicare, they were more likely than those enrolled in private insurance to be unsure about whether they stood to benefit from the ACA. This is not surprising given that 74% of respondents were not sure whether Ryan White Program funding would disappear with implementation of the ACA. When compared to the general population, a greater proportion of our respondents are unsure as to whether they will benefit from ACA. KFF Health Tracking Polls conducted over the same time period (November 2013 to March 2014) indicated that on a monthly basis, less than 20% of households surveyed reported that they were unsure of their view of ACA. This is in contrast to a majority of our respondents (58%). Similarly, between 34% and 40% of KFF survey respondents reported a favorable view of ACA, and 45% to 50% reported an unfavorable view of ACA, while around 20% of our respondents believed they had benefited, and an equal proportion believed they had not.14 It is possible that concerns regarding consistent coverage during the transition to ACA are more prevalent among our survey population given the risks associated with gaps in care and interruptions in access to ART. Our study focuses on a population that is directly affected by the ACA. In addition, our survey was conducted immediately before and during ACA implementation, a time when national coverage of the changes to come was at its peak. This was a single site study so the generalizability may be limited, particularly as Nebraska did not expand Medicaid coverage. This study was also potentially limited by the lack of gender in demographics, a factor that was unintentionally omitted. In conclusion, respondents’ knowledge of and perceived benefit from the ACA were much lower than anticipated. HIV-infected patients stand to benefit greatly from healthcare reform, but respondents were largely unaware of the potential benefits. Targeted education and outreach are necessary to reduce the knowledge gap. Acknowledgments
We thank all of the respondents and members of our HIV team for their continuous support. All of the authors contributed to the conception and design of the study and analyses and interpretation of data. The manuscript was drafted by I.R. and S.B. and was critically reviewed and approved by all authors. Our findings have been presented in poster form at the Nebraska Academy of Family Physicians 66th Annual Meeting & Scientific Assembly in Omaha, NE on March 28, 2014 and at IDWeek in Philadelphia, PA on October 11, 2014.
ROZIN ET AL. Author Disclosure Statement
No competing financial interests exist. References
1. AIDS.gov. The Affordable Care Act helps people living with HIV/AIDS. 2013. Accessed August 2014. 2. O’Hara B and Caswell K: Health status, health insurance, and medical services utilization: 2010. Curr Pop Rep 2012; 2012:70–133. 3. Snider JT, Juday T, Romley JA, et al.: Nearly 60,000 uninsured and low-income people with HIV/AIDS live in states that are not expanding Medicaid. Health Affairs 2014;33(3):386–393. 4. Henry J. Kaiser Family Foundation: Status of State Action on the Medicaid Expansion Decision. The Henry J. Kaiser Commission on Medicaid and the Uninsured, 2014. 5. State Health Reform Impact Modeling Project: New York: Harvard Law School, Center for Health Law and Policy Innovation, Treatment Access Expansion Project, 2013. 6. Goldman DP, Bhattacharya J, McCaffrey DF, et al.: Effect of insurance on mortality in an HIV-positive population in care. J Am Stat Assoc 2001;96(455):883–894. 7. Brodie M, Hamel L, Deane C, et al.: Kaiser Health Tracking Poll: March 2013. The Henry J. Kaiser Family Foundation, 2013. 8. Gross W, Stark T, Krosnik J, et al.: Americans’ Attitudes Toward the Affordable Care Act: Would Better Public Understanding Increase or Decrease Favorability? Robert Wood Johnson Foundation Inc., Princeton, NJ, 2012. 9. Khanna R, Mahabaleshwarkar R, Holmes ER, and Jariwala K: Pharmacists’ perspectives on the Patient Protection and Affordable Care Act. Res Social Administrat Pharm: RSAP 2014;11(1):111–120. 10. Huntoon KM, McCluney CJ, Scannell CA, et al.: Healthcare reform and the next generation: United States medical student attitudes toward the Patient Protection and Affordable Care Act. PloS One 2011;6(9):e23557. 11. Rocke DJ, Thomas S, Puscas L, and Lee WT: Physician knowledge of and attitudes toward the Patient Protection and Affordable Care Act. Otolaryngol–Head Neck 2014; 150(2):229–234. 12. Petrany SM and Christiansen M: Knowledge and perceptions of the Affordable Care Act by uninsured patients at a free clinic. J Health Care Poor Underserved 2014;25(2): 675–682. 13. Crowley JS and Kates J: The Affordable Care Act, the Supreme Court, and HIV: What Are the Implications. The Henry J. Kaiser Family Foundation, 2012. 14. Brodie M, Hamel L, and Firth J: Kaiser Health Tracking Poll: May 2014. The Henry J. Kaiser Family Foundation, 2014.
Address correspondence to: Sara H. Bares Division of Infectious Diseases University of Nebraska Medical Center 988106 Nebraska Medical Center Omaha, Nebraska 68198-8106 E-mail: [email protected]
CLINICAL PERSPECTIVE
HIV-Infected Patient Knowledge, Attitudes, and Beliefs Regarding the Affordable Care Act Irina Rozin,1 Harlan Sayles,2 Matthew J. Anderson,2 Renae Furl,3 Jim P. Stimpson,2 Susan Swindells,3 and Sara H. Bares 3
Abstract
We evaluated patient knowledge, attitudes, and beliefs regarding changes present with the Affordable Care Act (ACA). HIV-infected adults attending an academic medical center HIV clinic in Omaha, Nebraska were asked to complete a self-administered survey between November 2013 and March 2014. Information collected included demographics, knowledge regarding healthcare reform policies, as well as attitudes and beliefs regarding the potential impact of the ACA on patient access to healthcare. Basic descriptive statistics were used to assess demographic characteristics of respondents and outcomes of interest. Chi-square tests were used for comparisons of interest among participants; some trends were evaluated with Cochran–Armitage trend tests. Four hundred and six patients completed the questionnaire. Of the respondents 90% were between the ages of 27 and 64, 61% were white, 27% had no health insurance, and 21% reported that they felt they had or will eventually benefit from the ACA. The proportion who responded ‘‘I don’t know’’ to this question decreased over the study period ( p = 0.036). Overall, 57% reported they do not believe that they are informed enough to make decisions about the ACA. In answering four knowledge-based questions, only 3% answered all of them correctly. Knowledge about the ACA was significantly associated with perception of benefit ( p = 0.018). HIV-infected patients are not well informed about the ACA and few perceive that they will benefit from healthcare reform. Targeted education and outreach are necessary to reduce the knowledge gap for this population that stands to benefit greatly from the ACA.
Introduction
S
uccessful treatment of HIV disease requires access to specialized healthcare, periodic laboratory monitoring, and uninterrupted access to costly antiretroviral therapy. Insurance mitigates these costs, but people living with HIV/ AIDS in the United States have historically had a difficult time obtaining private health insurance.1 In 2010, it was estimated that 17% of HIV-infected patients had private insurance, compared to 65% of all Americans.1,2 While Medicaid is the most common source of coverage for HIVinfected patients, as many as 30% are uninsured.1 The implementation of the Patient Protection and Affordable Care Act (ACA) has the potential to decrease the disparity in access to health insurance faced by many HIV-infected patients. Under the law, insurers are not allowed to deny coverage based on health status or preexisting conditions, which has been a long-standing barrier to health insurance for HIV-infected patients.1 The new insurance marketplaces established under the ACA provide coverage to individuals who do not have access to employer-based coverage and also en-
able continuous coverage after separating from an employer. The ACA also bans annual and lifetime limits on insurance coverage and places an annual cap on out-of-pocket costs, all of which enable insurance coverage to be more affordable. With Medicaid expansion, an ACA initiative that was implemented in many states on January 1, 2014, it was anticipated that as many as 115,000 previously uninsured, lowincome HIV-infected patients would qualify for Medicaid.3 Nebraska, like 21 other states, has not moved forward with Medicaid expansion at this time.4 Additionally, 22% of recipients of the Ryan White funded AIDS Drug Assistance Programs (ADAP) nationwide may now qualify for subsidized private insurance.5 Importantly, studies have shown a positive correlation between insurance coverage and survival among HIV-infected patients.6 Despite its potential to close healthcare gaps in the United States, public opinion of the ACA has been divided. Many consumers of healthcare services are unaware of the specific changes the ACA brings and are wary of its direct impact on their care. For example, a recent survey conducted by the Kaiser Family Foundation (KFF) prior to the implementation of the
1
College of Medicine, 2College of Public Health, 3Division of Infectious Diseases, University of Nebraska Medical Center, Omaha, Nebraska.
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582
ACA found that 4 out of 10 Americans with a preexisting condition were uninformed of the changes to come with the ACA.7 Many studies have been conducted to determine the knowledge, attitudes, and beliefs of American people regarding healthcare reform.7,8 Additional studies have evaluated both provider and patient perspectives on the ACA.9–12 This study sought to characterize knowledge, attitudes, and beliefs of HIV-infected patients regarding the ACA and was implemented at the time the initial provisions of the ACA were being rolled out and thus when patients had the opportunity to enroll in insurance plans through the marketplace.
ROZIN ET AL.
Primary outcomes of interest were perception of benefit from healthcare reform and knowledge (both perceived and objective) related to healthcare reform. Subgroups included age groups, education level, employment status, insurance status, and income. Chi-square tests were performed to assess differences in perception of benefit by demographic characteristics of respondents and knowledge levels. Cochrane– Armitage trend tests were performed to determine if there was a difference in trend knowledge by perception of benefit and a difference in perception of benefit from healthcare reform over time. All analyses were conducted in SAS version 9.3 (The SAS Institute, Cary, NC).
Materials and Methods Environment
The study was conducted at the University of Nebraska Medical Center (UNMC) HIV clinic located in Omaha, Nebraska. It is the only dedicated HIV facility in the region and serves approximately 1,200 patients. Study sample and data collection
English-speaking adult men and women attending the UNMC HIV clinic were surveyed between November 18, 2013 and March 31, 2014. All eligible patients were invited to participate as they attended regular clinic visits; there was no formal selection process. A sample size of 371 was selected to allow for the estimation of confidence intervals for proportions with a precision of 5% or smaller and surveys were administered until we reached our goal sample size. The study was approved by the Institutional Review Board at the University of Nebraska. Exemption from written informed consent was granted and a cover letter informing participants about the study was attached to each survey. Survey instrument
A 23-item survey consisting of closed-ended questions was developed using input from local experts as well as previous Kaiser Family Foundation Health Tracking Polls. Questions were modified to a third- to ninth-grade reading level using the Flesch–Kincaid grade level readability index. The survey was piloted by four HIV team members and modified based on their feedback. The purpose of the survey was to gauge patient knowledge and attitudes toward the ACA and included questions to assess perceived knowledge as well as objective measures of knowledge related to key provisions afforded by the ACA. The survey also included patient demographics, source of information related to healthcare reform, and source of funding for healthcare. Attitudes toward the ACA were assessed by asking respondents whether they believed that they had or would benefit from healthcare reform as well as whether they anticipated changes in personal costs of healthcare, quality of healthcare, and in their ability to get and keep insurance. Statistical analysis
Basic descriptive statistics (frequencies and percentages) were calculated for all survey questions. Demographic characteristics of respondents were examined for the entire sample while the primary outcomes of interest were examined both overall and by subgroups within the sample.
Results
A total of 406 participants completed the survey. Demographics of the survey respondents are outlined in Table 1. The majority of respondents were between the ages of 27 and 64 years (90%) and most were white (61%). Most (75%) completed high school or higher and over half (61%) reported either full or part-time employment. Half of the survey respondents (50%) reported an annual income of less than $20,000. Slightly over one-quarter (27%) of respondents were uninsured. Knowledge
When asked whether they believed they had enough information about the ACA to make informed decisions, 118
Table 1. Demographics (N = 406) Characteristic Age group 19–26 27–59 60 or older Race/ethnicity NH white NH black Hispanic Other Education Grades 1–8 or no formal schooling Grades 9–12, HS diploma or GED Some college or 2-year associate degree Bachelor’s or greater Household income Less than $20,000 $20,000–$50,000 $50,000 or more Employment status Employed FT/PT Unemployed Student/retired/disabled/homemaker Insurance status Private – other Medicaid and/or Medicare Uninsured Don’t know or no answer
n (%) 29 (7) 338 (86) 24 (6) 236 99 25 29
(61) (25) (6) (7)
7 129 156 100
(2) (33) (40) (26)
188 (50) 118 (32) 67 (18) 238 (62) 53 (14) 95 (25) 181 92 109 24
(45) (23) (27) (6)
NH, non-Hispanic; GED, General Educational Development; HS, high school; FT, full time; PT, part time.
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(29%) answered ‘‘yes’’ whereas 283 (71%) answered ‘‘no’’ or ‘‘I don’t know.’’ Four questions assessed patient knowledge of the ACA. Slightly more than half (53%) of respondents did not know that the ACA was created to provide financial help to low-income and middle-income Americans in need of health coverage. Over half (62%) of the respondents were not aware of the ACA provision that eliminated preexisting condition restrictions. A similar number of respondents (63%) were not sure about Nebraska’s decision not to expand Medicaid. Lastly, only 97 (25%) respondents knew that the Ryan White Care Program would not be eliminated with implementation of the ACA. Overall, 215 (62%) of the respondents answered only zero or one knowledge question correctly and only nine (3%) respondents answered all four questions correctly. Knowledge was highest among nonHispanic whites ( p = 0.007), those with Bachelor’s degree or higher ( p < 0.001), the employed ( p = 0.006), and those with private insurance ( p = 0.002) (Table 2).
35%, social networking websites by 32%, and friends or family by 32%. The least common source of information reported was mail (14%) (Fig. 1). Respondents reported that the one source they trusted most was doctor’s office staff (53%), followed by television (16%) (Fig. 1).
Knowledge sources
When asked where they turned to for information regarding healthcare reform (select all that apply), television was cited most frequently (59%), closely followed by doctor’s office staff (50%). Newspapers or magazines were cited by
Attitudes and beliefs
When asked whether they had benefited or would benefit from healthcare reform 85 (21%) answered yes whereas 315 (79%) answered ‘‘no’’ or ‘‘I don’t know.’’ Only 137 (36%) respondents believed that their ability to obtain and keep health insurance would improve with healthcare reform while 82 (21%) believed it would get worse and 164 (43%) believed it would not change. When asked how they believed healthcare reform would affect the quality of their healthcare, the majority (60%) of respondents thought it would stay the same whereas the rest were split equally in that 20% thought it would improve and 20% thought it would get worse. When asked to rate the importance of various healthcare and health insurance factors on a scale of very important to not at all important, the highest rated factors were, in order of frequency, (1) the cost of prescriptions/medications (93% rated this ‘‘very important’’), (2) the ability to see physicians or specialists without extra cost (89% rated this ‘‘very
Table 2. Knowledge by Demographics (N = 406) Knowledge questions answered correctly Characteristic Age group 19–26 27–59 60 or older Race/ethnicity NH white NH black Hispanic Other Education Grades 1–8 or no formal schooling Grades 9–12, HS diploma or GED Some college or 2-year associate degree Bachelor’s or greater Household income Less than $20,000 $20,000–$50,000 $50,000 or more Employment status Employed FT/PT Unemployed Student/retired/disabled/homemaker Insurance status Private – other Medicaid – other Medicare – other Uninsured Don’t know or no answer a
0
1
2
3
4
11 (39) 99 (33) 6 (30)
6 (21) 85 (29) 6 (30)
5 (18) 62 (21) 3 (15)
5 (18) 42 (14) 5 (25)
1 (4) 8 (3) 0 (0)
56 41 12 7
(28) (44) (48) (29)
48 30 8 11
(24) (32) (32) (46)
51 15 2 3
(25) (16) (8) (13)
37 8 3 3
(18) (9) (12) (13)
9 0 0 0
(4) (0) (0) (0)
2 58 46 11
(29) (52) (33) (13)
3 32 43 19
(43) (29) (31) (22)
1 15 29 26
(14) (13) (21) (30)
1 5 19 27
(14) (4) (14) (31)
0 2 2 5
(0) (2) (1) (6)
c
0.740b
0.007c
< 0.001b
72 (43) 27 (27) 5 (8)
46 (27) 31 (31) 18 (30)
29 (17) 23 (23) 17 (28)
18 (11) 15 (15) 18 (30)
3 (2) 4 (4) 2 (3)
< 0.001b
53 (25) 19 (40) 42 (51)
65 (31) 12 (26) 19 (23)
51 (24) 10 (21) 10 (12)
35 (17) 6 (13) 11 (13)
8 (4) 0 (0) 1 (1)
0.006c
33 34 10 36 5
48 12 8 28 1
43 6 4 17 3
32 3 2 13 2
6 0 0 3 0
0.002c
(20) (62) (42) (37) (45)
(30) (22) (33) (29) (9)
(27) (11) (17) (18) (27)
(20) (5) (8) (13) (18)
Monte Carlo estimations of exact p-values. Mantel–Haenszel chi-square test. Pearson chi-square test. NH, non-Hispanic; GED, General Educational Development; HS, high school; FT, full time; PT, part time. b
p-valuea
(4) (0) (0) (3) (0)
584
FIG. 1. Most common and most trusted sources of information regarding healthcare reform. important’’), and (3) the ability to go to any hospital without extra cost (84% rated this ‘‘very important’’) (Fig. 2). Over one-third of patients (37%) reported believing they could not change jobs due to fear of change in health insurance. One-fifth of respondents reported that unaffordable copayments had prevented them from taking HIV medications at some point in the past. Perception of benefit according to knowledge, demographics, and month of survey completion
Those who reported not knowing whether they had benefited or would benefit from the ACA were significantly less
ROZIN ET AL.
knowledgeable about the ACA than those who reported knowing whether they had benefited or would benefit from the ACA ( p < 0.001) (Fig. 3). An analysis of perception of benefit in relation to age group, race/ethnicity, education, household income, employment status, and insurance status found significant associations between perception of benefit and the latter four groups whereas no association was found between perception of benefit from the ACA and age or race/ ethnicity (Table 3). Those with an education level equivalent to grade 8 or less reported a greater perception of benefit than respondents in any higher education category ( p < 0.001). Respondents who reported an annual income of less than $20,000 were less likely to report not benefiting from healthcare reform than respondents with incomes between $20,000 and $50,000 as well as those with incomes greater than $50,000 (11% versus 28% and 37%, respectively; p < 0.001). Additionally, those who were employed generally believed that they had benefited less from the ACA than those who were unemployed or not in the labor force ( p < 0.001). Finally, an analysis of perception of benefit in relation to insurance group demonstrated that respondents with private insurance were less likely to report ‘‘not knowing’’ whether they had or would benefit from the ACA than respondents in all other insurance categories ( p < 0.001). There was no increase in perceived knowledge over the course of the study period, but the percentage of respondents who believed that they either would or would not benefit from healthcare reform (‘‘yes/no’’ versus ‘‘I don’t know’’) did show a statistically significant increase over the 5-month study period ( p = 0.036). Discussion
Despite the best efforts of the clinic staff to provide relevant information, few HIV-infected patients attending the UNMC HIV clinic believed they had enough information about the ACA and an even smaller percentage believed that they were likely to benefit from the ACA. The lack of perceived benefit by respondents is surprising, considering that
FIG. 2. Frequency of healthcare factors reported as ‘‘very important’’ to respondents.
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FIG. 3. Respondent perception of benefit from healthcare reform by knowledge level.
people living with HIV disease generally stand to benefit greatly from the law’s provisions. HIV-infected patients by definition have a preexisting condition and the ACA prohibited insurance companies from denying coverage because of preexisting conditions in January 2014. Additionally, the provision of subsidized private health insurance for those with low income and the expansion of Medicaid are predicted to positively impact thousands of people living with HIV.13
We found that the lack of knowledge regarding the provisions of the ACA appeared to be contributing to low levels of perceived benefit. The reasons for lack of knowledge are not clear, but this was noted in spite of many efforts on behalf of outreach workers and clinic case managers to offer educational sessions regarding the ACA to our patients. It is also possible that respondents do not believe the ACA addresses the factors they most value in health insurance.
Table 3. Perception of Benefit from the Affordable Care Act by Demographics (N = 406) Have you benefited or will you benefit from healthcare reform? Characteristic Age group 19–26 27–59 60 or older Race/Ethnicity NH white NH black Hispanic Other Education Grades 1–8 or no formal schooling Grades 9–12, HS diploma or GED Some college or 2-year associate degree Bachelor’s or greater Household income Less than $20,000 $20,000–$50,000 $50,000 or more Employment status Employed FT/PT Unemployed Student/retired/disabled/homemaker Insurance status Private – other Medicaid – Medicaid Uninsured Don’t know or no answer
Yes
No
I don’t know
6 (21) 76 (23) 2 (8)
7 (24) 65 (19) 9 (38)
16 (55) 196 (58) 13 (54)
53 18 5 8
(22) (18) (20) (29)
49 22 3 6
(21) (22) (12) (21)
134 59 17 14
(57) (60) (68) (50)
4 20 30 30
(57) (16) (19) (30)
1 17 35 29
(14) (13) (22) (29)
2 91 91 41
(29) (71) (58) (41)
p-valuea
0.199
0.794
< 0.001
40 (21) 24 (20) 17 (25)
20 (11) 33 (28) 25 (37)
127 (68) 61 (52) 25 (37)
< 0.001
42 (18) 16 (30) 25 (26)
65 (27) 4 (8) 12 (13)
130 (55) 33 (62) 58 (61)
< 0.001
42 18 22 3
56 12 12 3
(23) (37) (20) (16)
(31) (27) (11) (16)
82 62 75 13
(46) (136) (69) (68)
a Monte Carlo estimations of exact p-values from Pearson chi-square test. NH, non-Hispanic; GED, General Educational Development; HS, high school; FT, full time; PT, part time.
< 0.001
586
When asked to rate the importance of health insurance factors, respondents rated cost of prescription medications most highly, but the ACA does not directly reduce costs of prescriptions for many patients. Additionally, less than a fifth of survey respondents thought that unaffordable copayments prevented them from taking their antiretroviral medications at any given point, so it may be possible that this is rated highly yet not seen as a major barrier to healthcare. Twenty-seven percent of uninsured respondents were enrolled in a Ryan White-funded program. Together with recipients of Medicaid and or Medicare, they were more likely than those enrolled in private insurance to be unsure about whether they stood to benefit from the ACA. This is not surprising given that 74% of respondents were not sure whether Ryan White Program funding would disappear with implementation of the ACA. When compared to the general population, a greater proportion of our respondents are unsure as to whether they will benefit from ACA. KFF Health Tracking Polls conducted over the same time period (November 2013 to March 2014) indicated that on a monthly basis, less than 20% of households surveyed reported that they were unsure of their view of ACA. This is in contrast to a majority of our respondents (58%). Similarly, between 34% and 40% of KFF survey respondents reported a favorable view of ACA, and 45% to 50% reported an unfavorable view of ACA, while around 20% of our respondents believed they had benefited, and an equal proportion believed they had not.14 It is possible that concerns regarding consistent coverage during the transition to ACA are more prevalent among our survey population given the risks associated with gaps in care and interruptions in access to ART. Our study focuses on a population that is directly affected by the ACA. In addition, our survey was conducted immediately before and during ACA implementation, a time when national coverage of the changes to come was at its peak. This was a single site study so the generalizability may be limited, particularly as Nebraska did not expand Medicaid coverage. This study was also potentially limited by the lack of gender in demographics, a factor that was unintentionally omitted. In conclusion, respondents’ knowledge of and perceived benefit from the ACA were much lower than anticipated. HIV-infected patients stand to benefit greatly from healthcare reform, but respondents were largely unaware of the potential benefits. Targeted education and outreach are necessary to reduce the knowledge gap. Acknowledgments
We thank all of the respondents and members of our HIV team for their continuous support. All of the authors contributed to the conception and design of the study and analyses and interpretation of data. The manuscript was drafted by I.R. and S.B. and was critically reviewed and approved by all authors. Our findings have been presented in poster form at the Nebraska Academy of Family Physicians 66th Annual Meeting & Scientific Assembly in Omaha, NE on March 28, 2014 and at IDWeek in Philadelphia, PA on October 11, 2014.
ROZIN ET AL. Author Disclosure Statement
No competing financial interests exist. References
1. AIDS.gov. The Affordable Care Act helps people living with HIV/AIDS. 2013. Accessed August 2014. 2. O’Hara B and Caswell K: Health status, health insurance, and medical services utilization: 2010. Curr Pop Rep 2012; 2012:70–133. 3. Snider JT, Juday T, Romley JA, et al.: Nearly 60,000 uninsured and low-income people with HIV/AIDS live in states that are not expanding Medicaid. Health Affairs 2014;33(3):386–393. 4. Henry J. Kaiser Family Foundation: Status of State Action on the Medicaid Expansion Decision. The Henry J. Kaiser Commission on Medicaid and the Uninsured, 2014. 5. State Health Reform Impact Modeling Project: New York: Harvard Law School, Center for Health Law and Policy Innovation, Treatment Access Expansion Project, 2013. 6. Goldman DP, Bhattacharya J, McCaffrey DF, et al.: Effect of insurance on mortality in an HIV-positive population in care. J Am Stat Assoc 2001;96(455):883–894. 7. Brodie M, Hamel L, Deane C, et al.: Kaiser Health Tracking Poll: March 2013. The Henry J. Kaiser Family Foundation, 2013. 8. Gross W, Stark T, Krosnik J, et al.: Americans’ Attitudes Toward the Affordable Care Act: Would Better Public Understanding Increase or Decrease Favorability? Robert Wood Johnson Foundation Inc., Princeton, NJ, 2012. 9. Khanna R, Mahabaleshwarkar R, Holmes ER, and Jariwala K: Pharmacists’ perspectives on the Patient Protection and Affordable Care Act. Res Social Administrat Pharm: RSAP 2014;11(1):111–120. 10. Huntoon KM, McCluney CJ, Scannell CA, et al.: Healthcare reform and the next generation: United States medical student attitudes toward the Patient Protection and Affordable Care Act. PloS One 2011;6(9):e23557. 11. Rocke DJ, Thomas S, Puscas L, and Lee WT: Physician knowledge of and attitudes toward the Patient Protection and Affordable Care Act. Otolaryngol–Head Neck 2014; 150(2):229–234. 12. Petrany SM and Christiansen M: Knowledge and perceptions of the Affordable Care Act by uninsured patients at a free clinic. J Health Care Poor Underserved 2014;25(2): 675–682. 13. Crowley JS and Kates J: The Affordable Care Act, the Supreme Court, and HIV: What Are the Implications. The Henry J. Kaiser Family Foundation, 2012. 14. Brodie M, Hamel L, and Firth J: Kaiser Health Tracking Poll: May 2014. The Henry J. Kaiser Family Foundation, 2014.
Address correspondence to: Sara H. Bares Division of Infectious Diseases University of Nebraska Medical Center 988106 Nebraska Medical Center Omaha, Nebraska 68198-8106 E-mail: [email protected]
