Rehabilitation Consumers' Use and Understanding of Quality Information: A Health Literacy Perspective

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ORIGINAL ARTICLE

Rehabilitation Consumers’ Use and Understanding of Quality Information: A Health Literacy Perspective Susan Magasi, PhD, Elizabeth Durkin, PhD, Michael S. Wolf, PhD, MPH, Anne Deutsch, PhD, RN, CRRN ABSTRACT. Magasi S, Durkin E, Wolf MS, Deutsch A. Rehabilitation consumers’ use and understanding of quality information: a health literacy perspective. Arch Phys Med Rehabil 2009;90:206-12. Objectives: To explore consumers’ use and understanding of quality information about postacute rehabilitation facilities. Design: Thematic, semistructured interviews. Setting: Two skilled nursing facilities and 2 inpatient rehabilitation facilities in a large Midwestern city. Participants: Rehabilitation inpatients (n⫽17) with stroke, hip fractures, and joint replacements and care partners (n⫽12) of rehabilitation inpatients. Intervention: None. Main Outcome Measure: None. Results: Health literacy imposed barriers to participants’ understanding of quality information. Using the Institute of Medicine’s Health Literacy Framework, we identified specific barriers that limited participants’ abilities to (1) obtain quality information, (2) process and understand quality information, and (3) make appropriate decisions about the quality of a rehabilitation facility. Participants tended to rely on informal and nonquality information when choosing a rehabilitation facility. Conclusions: Given the barriers imposed by low health literacy, rehabilitation providers have a responsibility to present quality information in a way that consumers, especially those with low health literacy, can use and understand. Key Words: Qualitative research; Quality indicators, health care; Rehabilitation. © 2009 by the American Congress of Rehabilitation Medicine HE INSTITUTE OF MEDICINE has called for increased T availability of health care quality information through public reporting. Public reporting of quality information seeks to 1

improve health care quality by making providers more account-

From the Center on Outcomes, Research and Education, NorthShore University HealthSystem, Evanston (Magasi); Department of Psychiatry and Behavioral Sciences, Northwestern University, Chicago (Durkin); Health Literacy and Learning Program, Division of General Medicine and Institute for Healthcare Studies, Northwestern University, Chicago (Wolf); Rehabilitation Institute of Chicago, Chicago (Deutsch); and Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago (Deutsch, Magasi), IL. Presented to the American Congress of Rehabilitation Medicine and American Society of Neurorehabilitation Joint Conference, October 3–7, 2007, Washington, DC. Supported by the National Institute on Disability and Rehabilitation Research through a Rehabilitation Research and Training Center on Measuring Rehabilitation Outcomes and Effectiveness (grant no. H133B040032). No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated. Reprint requests to Susan Magasi, PhD, Center for Outcomes, Research and Education, NorthShore University HealthSystems, 1001 University Place, Ste 100, Evanston, IL 60201, e-mail: [email protected]. 0003-9993/09/9002-00499$36.00/0 doi:10.1016/j.apmr.2008.07.023

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able to funders and consumers. Public reporting of quality information seeks to promote greater consumer choice and informed decision making by providing people with a means to compare the quality of health care delivered at different facilities. Although accrediting agencies, such as CARF, require the collection of outcomes information, the rehabilitation industry has not adopted a consistent system of public reporting. The choice of what and how quality information is reported is left to the discretion of individual providers, making crossfacility comparisons difficult. Additional barriers to public disclosure of rehabilitation outcomes include the lack of a valid system of risk adjustment; the complexity of rehabilitation outcomes; discrepancies between consumer expectations and rehabilitation outcomes; and the industry’s lack of uniform systems for measuring, collecting, and reporting outcome data.2 The United States Department of Health and Human Services’ CMS* disseminates quality information on SNFs through the Nursing Home Compare website (available at: http://www. medicare.gov/NHCompare), but these measures do not reflect adequately rehabilitation quality nor are they predictive of rehabilitation outcomes.3,4 Consumers are confronted with a dearth of quality information about rehabilitation providers.3 Even when quality information is available, the extent to which people use the information is not clear. Although there is a paucity of research on the use of quality information in the rehabilitation context, national surveys of experiences with health care quality information found that people express a strong preference for information from informal sources when making decisions.5 This preference may reflect, in part, the fact that nearly half of all adults possess limited health literacy that may challenge their ability to understand and act on health information.6 Low health literacy is a major barrier to quality health care in America.6,7 Health literacy is related not just to a person’s ability to read but also to the degree to which a person can “obtain, process, and understand basic health information and services needed to make appropriate health decisions.”8(vi) For consumers to use quality information, it must be readily accessible and presented in a manner that is easy to understand and use.9,10 In this exploratory study, we examined rehabilitation

*The CMS administers the Medicare program and works in partnership with state governments to administer Medicaid, the State Children’s Health Insurance Program, and health insurance portability standards. Medicare is the federally funded health insurance program for adults 65 and older, people with certain disabilities, and those with end-stage renal disease. Medicaid is state-administered health insurance for low income individuals and their families.

List of Abbreviations CARF CMS IRFs SNFs

Commission for the Accreditation of Rehabilitation Facilities Centers for Medicare and Medicaid Services inpatient rehabilitation facilities skilled nursing facilities

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patients’ and their care partners’ understandings of rehabilitation quality indicators by using health literacy as a theoretic framework. METHODS Study Design This exploratory study used thematic, semistructured interviews to examine (1) the process of choosing a rehabilitation facility, (2) the comprehension of quality information, and (3) the perceived relationship between individual quality indicators and the overall quality of care provided by a facility. The interviews were conducted by 3 health service researchers (ED, MW, AD) with backgrounds in quality, rehabilitation, and health literacy; they were assisted by a research assistant with experience in qualitative interviewing. All interviews were conducted between November 2005 and November 2006 at inpatient settings that provide medical rehabilitation. Interviews took place either in patients’ rooms or other private locations and lasted 30 to 45 minutes. Interviews began with a demographic questionnaire followed by open-ended questions about how participants chose where to receive rehabilitation services. We probed participants about key determinants of facility choice, including referrals, recommendations, and other aspects of the decision-making process. We provided reading assistance to participants with visual or reading difficulties. We then presented participants with 10 quality indicators that reflected quality information commonly measured and reported in the post–acute care industry. These quality indicators were culled from a variety of sources, including the CMS Nursing Home Compare website (the 3 indicators for short-stay patients),11 CARF’s Performance Indicator monograph,12 and a review of the quality information provided on inpatient rehabilitation facility websites. For each quality indicator, we identified a “key term” that was deemed essential to item comprehension (eg, for the indicator average motor functional status at discharge, the key term was motor functional status). The quality indicators represented 8 key terms, including motor functional status, cognitive status, discharge to home or community, length of stay, patient satisfaction, delirium, moderate to severe pain, and pressure ulcers. We asked respondents to define each key term in their own words and provided definitions if patients could not do so correctly. Then, we asked participants to describe how the quality indicator was related to a facility’s overall quality of care. Interviews were audiotaped with participants’ permission and transcribed verbatim. We compensated participants $10 to acknowledge their contributions. The study was approved by Northwestern University’s Human Subjects Review Board. Sample We recruited patients and care partners at 2 IRFs (a freestanding hospital and a hospital-based unit) and 2 SNFs (a freestanding facility and a hospital-based unit). We selected the facilities to represent socioeconomically diverse patient populations and different geographic sectors of a large Midwestern metropolitan area. Inclusion criteria were patient age 50 years or older and a diagnosis of stroke, hip fracture, or joint replacement. Facility staff identified potential participants based on the inclusion and exclusion criteria and coordinated the interviews. Given the interview demands, participants with cognitive and communication impairments or limited English proficiency were not eligible for referral. To ensure that the interviews captured the greatest number of patient experiences, only 1 member of a patient-care partner dyad was recruited.

Table 1: Participant Demographics Characteristics

Age (y) Mean Range Sex Female Male Race Black White Education ⱕHigh school College Advanced degree Insurance status Medicaid Medicare Private insurance

Patients (n⫽17)

Care Partners (n⫽12)

73.5 50–88

60.7 38–85

13 4

7 5

4 13

1 11

11 4 2

3 8 1

1 14 2

0 9 3

Researchers did not access the participants’ medical records. The sample consisted of 29 individuals (17 patients and 12 care partners). Table 1 shows self-reported demographic information. Data Analysis Interview transcripts were reviewed by 4 investigators. Two investigators coded definitions of each quality indicator’s key term independently as correct or incorrect; we reconciled discrepancies through discussion with the entire research team until we reached consensus. This intensive dialog provided a first round of qualitative coding. Discussions about the aggregated participant data allowed us to identify core themes and develop theme labels. We developed a coding dictionary to ensure consistent interpretation of themes and to guide a second level of analysis. Next, the lead author coded all transcripts by using Atlas-ti data-management software.a A research assistant with extensive qualitative research experience coded a random sample of 10 interview transcripts (one third of the sample) to assess coding reliability. We synthesized the themes and collapsed them into meaningful categories for interpretation by the entire research team. A conceptual model (fig 1) was developed to organize and integrate the participants’ responses with health literacy theory. The development of the conceptual model represents an additional level of analysis that moves beyond the cataloging of themes to provide a deeper understanding of consumers’ use and understanding of rehabilitation quality information. RESULTS The participants’ abilities to use quality indicators were compromised by health literacy barriers in (1) obtaining health information, (2) processing and understanding health information, and (3) making appropriate health decisions. Figure 1 presents a conceptual model of how reduced health literacy created barriers to consumers’ use of quality information to inform decisions. Specific concerns related to each of these requisite functions of health literacy are summarized. Obtaining Health Information The participants’ abilities and willingness to obtain information about quality were limited by (1) their understandings of Arch Phys Med Rehabil Vol 90, February 2009

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Fig 1. Conceptual model of consumers’ use and understanding of quality indicators to inform choice of rehabilitation facilities.

the rehabilitation context, (2) the timing of the decision-making process, and (3) the trustworthiness of the data sources. Understanding the Rehabilitation Context Quotations from a family member who worked in health care emphasized a lack of familiarity with rehabilitation that compromised information seeking: Most people have never gone through this before. And you need to know there are different levels of care. Who knows that if you’ve never worked in a hospital before or had anyone ill? Timing The timing of the decision making also created barriers to obtaining quality information. Some participants noted that the sudden onset of their disabling condition, either a hip fracture or stroke, limited their opportunity to conduct research on rehabilitation settings. In the words of 1 participant, “I didn’t have time to plan or anything because I fell and that was it.” Decisions often had to be made when the patients’ abilities were compromised by physical, cognitive, or emotional impairments. For example, a woman described how her son assumed the role of primary decision maker: I thought I was going to a different nursing home. My son said, ‘Mom, I don’t think so’ . . . He really pushed me . . . because I wasn’t capable of doing it, you know, at the time. The demands of acute care caused a number of patients to forgo research on rehabilitation options. As a patient explained, I did research on my surgery on the Internet, but I didn’t—I never got in touch about what I was going to do as far as rehab . . . I knew of other facilities I could get information about, but I just didn’t pursue it. Therefore, even when surgery was scheduled in advance, consumers and their care providers placed little emphasis on planning for rehabilitation: My wife did most of the research on it [rehabilitation], because I believed the surgeon who thought I could be home in one day. Arch Phys Med Rehabil Vol 90, February 2009

Trust Trust was a consideration when seeking quality information. Information about subjective experiences, such as patient satisfaction, was deemed most trustworthy, as the following patient quotes indicate: I’ve seen things where the hospital says they are this or that. You know we’re good and things of that nature, but they can say anything they want. Now if the patients are saying that they’re good, that’s totally different. I’d listen. If the folks were happy, then I guess they received good care. If they weren’t happy then they received bad care. [It is] black or white. Perceived impartiality of information sources was deemed important. One care partner emphasized, “Some impartial review of facilities would be nice . . . I don’t know if they have that for rehab.” In contrast, provider motives for presenting quality information were suspect. For example, a participant described his mistrust of provider marketing: I got to check it out and see if it’s for real first. Because you can—well people don’t always tell the truth about it. They add a little bit. I don’t go for adding. I go for knowing for sure . . . Because all you’re going to do is be out there trying to make money and I am trying to get well and we ain’t helping each other. Participants also raised concerns about the impartiality of governmental agencies as illustrated by this patient statement: I don’t have faith in the figures of a lot of other government agencies, including Medicare. I don’t have much confidence in Medicare . . . Rather than take the word of Medicare, I would much rather depend upon my doctor’s wife, and people that I know, and people in the hospital, and people who are on staff with my surgeon. Processing and Understanding Health Information Even when presented with quality information, people had difficulty processing and understanding the information. Individuals must be able to read and understand key concepts associated with quality information in order to act on it. Respondents showed limited comprehension of many of the key

CONSUMERS’ UNDERSTANDING OF QUALITY INFORMATION, Magasi Table 2: Consumer Comprehension of Quality Indicator Key Terms % Correct Key Term

Total (N⫽29)

Patients (n⫽17)

Care Partners (n⫽12)

Cognitive functional status Delirium Discharge to home or community Pressure ulcers Motor functional status Moderate to severe pain Patient satisfaction Length of stay

43 55 57 62 70 73 80 81

25 54 37 62 49 57 80 72

75 57 86 62 100 73 80 100

terms related to rehabilitation quality. Table 2 summarizes participants’ comprehension of the 8 key terms. They had the greatest difficulty defining cognitive functional status and discharge to home or community. Participant comprehension was highest for patient satisfaction and length of stay. Even for the highest-ranked items, there is room to improve comprehension because roughly 1 in 5 respondents could not correctly define key terms. Barriers to processing and understanding the key concepts included (1) complexity, (2) the use of medical terms, and (3) partial comprehension. Complexity The low comprehension of the indicator discharge to home or community can be attributed to issues of complexity. Awkward or double-barreled phrasing led some participants to interpret community as an alternative to home, as seen in 2 patient quotes: Discharged home would be to the home that you live in and the care of your husband, mother, whatever. The community, I would think maybe a facility that’s run by the community. The people who are discharged home are the number of people who are well enough to go home, but I don’t understand the community part. Even though the participants understood the words, the phrasing obstructed the quality indicator’s meaning. Use of Medical Terms In contrast, the quality indicators about cognitive functional status, delirium, and pressure ulcers were misunderstood because of their use of medical terminology. Even better educated people were unfamiliar with cognition as shown by this care partner’s statement: Cognition, no, I could never tell you what that means . . . I’ve got 2 years of college, but I couldn’t tell you. Similarly, although many of the participants were familiar with the term delirium, the precise meaning was not clear. Participants confused delirium with dementia or with being “funny, you know bunkers . . . someone who is always doing something crazy.” Similarly, although over half of the participants could define pressure ulcer, comprehension increased when more familiar terms, like bed sore, were used. The use of colloquial terms also increased ability to relate the quality indicator to quality of care with statements such as:

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Bed sore . . . I’d know if they were moving people over and moving them around . . . I wouldn’t want to go somewhere where someone is being ignored. Partial Understanding Participants made assumptions about quality indicators based on partial understanding of key concepts. For example, definitions of motor functional status were frequently limited to mobility and ambulation, as the following care partner statement shows: How her body can move. Because motor to me is being able to, you know get up, sit down, you know get out of bed, do those types of things, walk. Most participants did not include self-care skills in their definition of motor function. Similarly, many participants did not differentiate moderate to severe pain from the pain or discomfort that might reasonably be expected after an acute injury. For example a patient said, “I assume that they all have severe pain or they wouldn’t be here.” Making Appropriate Decisions These barriers to comprehension limit participants’ abilities to process the information quality indicators are meant to convey. Even when participants were able to understand key terms, many had difficulty using the information to evaluate a facility’s quality of care. We identified 5 barriers: (1) expectations of full recovery, (2) utility of individual indicators, (3) need for case-mix adjustment, (4) individualization of outcomes, and (5) misinterpretation of causal links. Expectation of Full Recovery Participants often viewed functional outcomes, especially motor functional status, as a return to a level of function needed for independent living or full functional independence. Participants described the expectation that at discharge people would: get back mobility that is near, if not all, as to what he had in the beginning” such that “the person when they are discharged has to be independently on their own . . . there is a point where you should be when you are discharged. Several participants interpreted the quality indicator as attainment of a desired outcome rather than about the actual outcomes that people attained. Misinterpretation may indicate poor comprehension of the rehabilitation process and create unrealistic expectations for functional recovery. Utility of Individual Indicators Participants questioned the ability of a quality indicator to capture the nuances of rehabilitation outcomes. For example, a patient discussed the need to consider multiple factors as components of a larger process: It sounds crazy but all these are interrelated . . . One by itself doesn’t mean much . . . . But a group of figures of all of these things would paint a picture. Another patient described how he would use multiple indicators such as motor functional status, length of stay, and pain to paint that picture. You may know that they walk out but what was their condition when they came in? And how long ago did they come in? . . . If a guy said, ‘Gee I came in here on crutches all bent over. I can barely stand and now I’m walking out Arch Phys Med Rehabil Vol 90, February 2009

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with a walker, but I’m walking straight and feeling pretty much pain-free and doing this and doing that. Need for Case-Mix Adjustment Some participants recognized challenges in comparing quality information from different facilities without information about the persons served. The following quotes from care partners show an appreciation that patient characteristics can affect facility-level outcomes. I think it would depend on the person and how severe their damage was and you know as far as strokes or whatever and age . . . and the person in general. I would look at myself . . . a person 55 years old, overweight, have bad knees, have high blood pressure—what facility handles a person better with those problems? Although no one used the term case mix, some participants recognized that comparisons required an understanding of facilities’ case-mix characteristics. In the word of 1 patient, “That would be important [information] because you’re comparing discharge status with the entry status.” Individualization of Outcomes Many of the participants viewed outcomes as personal and highly individualized. For example, the quality indicator percentage of patients with moderate to severe pain was seen as An individual patient problem. I wouldn’t necessarily look at that as an institutional problem. I would look at that maybe as a personal problem, they might have some personal injury. Similarly, the link between delirium and health care quality was not evident to many of the participants. For example, a care partner explained I don’t think I would hold that [percentage of people with delirium] against the institution . . . I think it’s an individual thing. I don’t know how the institution could really drive that one way or another. A number of participants who expressed an individualized view of rehabilitation outcomes questioned the utility of quality indicators to inform rehabilitation decisions. “I don’t have time to worry about anyone else. I have enough to worry about with just me.” Misinterpretation of Causal Links Several participants misunderstood the causal relationship between quality indicators and a facility’s quality of care. This misunderstanding was most common with complication-related quality indicators such as pain, delirium, and bed sores; a higher incidence of complications was seen as reflective of the facility’s ability to identify and treat the complications. For example, 1 patient stated that she assumed that a higher incidence of moderate to severe pain reflected staff doing a better job of assessing pain. Similarly, several participants assumed that a higher incidence of delirium indicated a facility’s specialization in delirium treatment. These findings show that rehabilitation patients and their care partners face impediments to all 3 components of health literacy, and these impediments constrain their use of quality information when selecting a rehabilitation facility. If participants are not using quality information, how did they choose their rehabilitation providers? Arch Phys Med Rehabil Vol 90, February 2009

Informal Information The participants described a selection process based on informal information sharing that included: (1) word of mouth, (2) physician practice patterns, (3) familiarity, and (4) proximity. Word of Mouth Recommendations from friends and family were cited as a major influence. I would still say that a group of recommendations by physicians, nurses, friends and people who have experienced it would be the best. Several participants reported family members working in a health care facility. This insider perspective was valued, as shown by the following patient quote: I got one daughter that works here. So she knows all the brass and she knows all the good doctors that are here because she’s been working around them for a while. Physician Referral Patterns Physician referrals were important in determining the location of rehabilitation. Patients’ respect for their physicians and their desire to maintain continuity of care were a frequent consideration. You find a doctor you trust, you ask them advice. You pretty much trust your doctor. You say ‘Is this a good facility? Should I go there? A small proportion of participants reported that they felt that their options were limited, and the physician’s preferences outweighed their own. Dr. X wanted me to go through the more extensive care [from the nursing home]. But I really wanted to go here [to a hospital-based IRF] but then he kept saying, ‘No.’ He wanted me to go there. So I gave up. I thought well I’m going to have to go there. Familiarity Familiarity with the health care facility and the facility’s reputation also contributed to decisions. Facility reputation was used when the rehabilitation setting was well known for providing care to people with similar conditions. Familiarity and previous experience with a facility were cited by participants who chose to receive rehabilitation in their local community. I would go to where I had experience . . . I wouldn’t have to make a choice. I’ve got that one hospital and I had it all of the time. Another patient stated, We’ve had the same doctor for the last, what, about 12 years. He recommended the [IRF] when I came a couple of years ago for my hip replacement and it was good. I liked it here and that the staff were very nice and I got better pretty fast so coming here was a no brainer for us. Proximity For some participants, proximity to home, with access to local support networks, was a key criterion. Being close by and having confidence in the facility that you’re using makes all the difference in the world. On a day-to-day basis working with people, location is a big deal . . . if someone is in a rehab unit for 2 to 4 weeks;

CONSUMERS’ UNDERSTANDING OF QUALITY INFORMATION, Magasi

that’s a long period of time if you come to visit every day and had to be traveling far. For some participants, practical concerns superseded considerations of quality. One patient explained her choice to remain in her neighborhood despite another facility’s superior quality: The one downtown stands out in my mind, but it costs $10 –15 to park. But that’s the world’s best therapy place to go . . . But parking is $10, $15 and my kids come all the time and none of them are rich . . . [So] I went to the one in the neighborhood. DISCUSSION This study identified health literacy barriers that limited consumers’ ability to understand and use rehabilitation quality information. Figure 1 provides a conceptual model of the specific barriers that were identified to interfere with 3 requisite functions of health literacy: the ability to obtain, understand, and use health information. Selecting a rehabilitation setting is determined by multiple factors. Although the process could be informed by publicly reported quality information, people often base their decisions on informal information sharing and factors that may be unrelated to quality. This finding is consistent with research on the role of quality information in acute and surgical care.5,13 The reliance on informal sources of information is a concern given that people do not have equal access to knowledgeable people. As a result, health disparities may be exacerbated as limited access to reliable information may restrict access to quality rehabilitation care.14,15 The intersection between health literacy and quality information is important because rehabilitation providers experience pressure from regulatory agencies for greater transparency through public reporting of quality information. A rationale for greater public reporting is that it improves consumers’ abilities to make informed health care decisions. However, if consumers do not understand the information, they are unlikely to value or use it. We found that both patients’ and care partners’ ability to understand quality information was compromised. Patients tended to be older and less educated than the care partners; however, even participants with college degrees had difficulty understanding key terms. As one care partner reported, I have two years of college . . . I couldn’t tell you what that means.” Education is not a proxy for health literacy. Age, impairment, medication effects, and the cognitive demands of making health decisions under conditions of acute stress limit the ability to process complex and unfamiliar health information.16 The Institute of Medicine’s report, Health Literacy: A Prescription to End Confusion, attributes part of the health literacy problem to the mismatch between individual skills and the manner in which health care information is presented.6 People do not value what they do not understand. The unfamiliarity and complexity of rehabilitation requires that rehabilitation providers present quality information in a way that is understandable to all consumers, even those with low health literacy skills.6 Health literacy experts advocate a universal approach to the presentation of health information whereby providers assume responsibility for conveying information that can be understood by all consumers, even those with reduced health literacy.17 Because public reporting of rehabilitation quality information is nascent, providers have the opportunity to integrate health literacy principles from the onset. Our conceptual model of consumers’ understanding and use of quality information (see fig 1) identifies barriers to understanding and opportunities for improvement.

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Practice Implications In 2006, the Medicare Payment Advisory Commission made recommendations to Congress on the need to increase the relevance of quality data to postacute care, including rehabilitation.18 This study provides evidence that can guide the development and presentation of quality information in ways that address health literacy barriers. Obtaining Health Information Data should be consistently and readily available to consumers. Reporting standards, similar to CMS’ Nursing Home Compare, could be developed through regulatory or accrediting agencies. Clear statements about how data are collected and reported can increase transparency and decrease consumer mistrust of reporters’ motives.10 Health care providers should take responsibility for educating patients about the availability of quality information and encourage consumers to use that information to make informed decisions. Processing and Understanding Health Information Text and graphs should be simplified by reducing extraneous details and wordiness.19,20 Providers should limit their use of medical terminology and jargon. Some health concepts are complex; therefore, brief definitions of key terms should be provided. As much as possible, the words that consumers use to define key concepts should be used. Making Appropriate Health Decisions Hibbard and Pawlson9 stress the need to facilitate consumers’ ability to process quality information by providing a framework for understanding quality. Our findings affirm the need to make explicit the link between quality information and quality of care at a facility level. Quality indicator presentation should include a brief statement about the indicator’s relevance to the quality of care. Statements of why this information is important should be included for each indicator. Grouping similar information together can decrease the cognitive demands.20,21 Clear statements about the direction of relationships can enhance interpretations of causality. For example, Gerteis et al22 found that consumers preferred an evaluative table with words (ie, better, average, worse) because it facilitated the comparison of quality information across facilities. Future Directions Future research could include the development and testing of simplified print and electronic materials. These materials could be tested with low health literacy consumers and potential consumers of rehabilitation services to see if they improve comprehension. The quality indicators included in this study may not represent those issues of highest importance to consumers; therefore, we should seek to understand what information consumers want, value, and use to inform their decisions. Future projects could develop decision aids that provide consumers with a framework for using quality information to promote shared decision making. Study Limitations Several limitations affect this study’s generalizability. First, we relied on a small convenience sample of rehabilitation inpatients and their care partners in a major Midwestern city, which may not be representative of the population of rehabilitation consumers. The community is home to several rehabilitation facilities with national reputations for excellence. The participants may have different information-seeking patterns Arch Phys Med Rehabil Vol 90, February 2009

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than people living in areas with few rehabilitation providers. Because the participants were rehabilitation inpatients and their care partners, they are likely to be more familiar with and better informed about the rehabilitation experience than the general population. Additionally, a number of respondents had family members employed in the health care field, meaning they may have had better access to medical expertise. However, given the exploratory nature of this study, we did not aim to generalize our results to a larger population. The small sample did not allow group comparisons related to demographic and other characteristics variables such as diagnosis, education, and insurance type. Future research should address the relationship between health literacy, comprehension of quality information, and utilization of rehabilitation services. The research team did not have access to the patients’ medical records and therefore had limited knowledge of the patients’ treatments, including medications and their effects and subtle cognitive limitations. Understanding these potentially confounding variables would provide insight into the circumstances under which people process information and make rehabilitation decisions. Because there is no core set of quality measures reported across rehabilitation settings, the quality indicators used in this study may not be the best indicators of quality. CONCLUSIONS The study findings suggest that consumers’ abilities to assess the quality of rehabilitation care are limited. Low health literacy limited participants’ abilities to obtain, process, and understand individual quality indicators and their relationship to rehabilitation quality. Many consumers based their decisions on subjective information and informal sources, including word of mouth recommendations from friends and family, physician practice patterns, familiarity, and proximity. Although consumers may trust these sources, they may not provide the best assessment of quality nor are they equally available to all people. Quality information should be presented in a way that consumers can use and understand. Acknowledgments: The authors wish to acknowledge the contributions of Holly Demark, BA, and all of the participants and facilities who contributed to this research. References 1. Institute of Medicine (U.S.). Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st century. Washington (DC): National Academy Pr; 2001. 2. Beatty PW, Neri MT, Bell K, DeJong G. Use of outcomes information in acute inpatient rehabilitation. Am J Phys Med Rehabil 2004;83:468-78. 3. Silverstein B, Findley PA, Bode RK. Usefulness of the nursing home quality measures and quality indicators for assessing skilled nursing facility rehabilitation outcomes. Arch Phys Med Rehabil 2006;87:1021-5. 4. Report to the Congress: Medicare Payment Policy. Washington, DC (601 New Jersey Avenue, NW, Suite 9000, Washington, DC 20001): Medicare Payment Advisory Commission; 2006. 5. Kaiser. National survey on consumer experiences with patient safety and quality information. November 2004. Available at: http://www.ahrq.gov/qual/consattitud.htm. Accessed November 9, 2008.

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