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Discussion Paper


Informing Older Consumers About Health Care Quality

Issues in Implementing a Research and Action Agenda

By Shoshanna Sofaer, Dr.P.H., School of Public Affairs, Baruch College


Held December 11-12, 2000, New Directions for Research and Action was a conference designed to be a collaborative forum for discussing the challenges and opportunities of improving communication of information about health care quality to consumers. Discussions were to be based on the Research and Action Agenda, developed by the Work Group on Consumer Health Information.

Because that agenda does not address the problems of specific segments of the population, the Work Group commissioned a set of papers that focus on how issues relate to the information and health care needs of certain groups.

This discussion paper was distributed with the agenda in preparation for the conference in December 2000.


Contents

Summary
Distinctive Characteristics of Older Consumers

Demographic Characteristics
Cognitive Capacity
Health Status Characteristics
Choice Environment
Cohort Characteristics
Information Sources
Key Issues in Educating and Motivating Consumers To Use Quality Information
Identifying Key Messages and Framing Strategies
Developing "Broadband" Multi-Media Educational Campaigns
Reaching, Motivating and Educating Family Members and Friends
Key Issues in Improving the Supply and Delivery of Consumer-Oriented Quality Measures
Dissemination Channels
Presentation Strategies
Decision Support in Using Quality Information
Key Issues in Developing Consumer-Relevant Quality Measures
Key Issues in Identifying the Market Characteristics and Purchasing Strategies that Support Consumer Use of Quality Information
Key Issues in Evaluating the Utility and Impact of Consumer Information Efforts
Appendix A. Continuum of Intermediary Relationships with People on Medicare
References

Summary

Older Americans are an important and challenging audience for information about health care quality. They are both different from younger Americans and very diverse as a group, and becoming more diverse, especially culturally, over time. Their health and functional status makes them both more interested in getting health care information and more challenged because of sensory, cognitive, and mobility impairments, in accessing, comprehending, and using it to make decisions. Many face serious literacy and health literacy challenges in understanding text, numbers, and documents.

A substantial subset get assistance from family members, friends, and trusted professionals in making health-related decisions; this group is another important audience for health care quality information directed to older persons. The choice content facing older Americans is complex, and their knowledge about the "underpinning" of their health care coverage, the Medicare program, is limited, as is their knowledge of other traditional and newly emerging insurance options.

The most significant information challenges we face in serving the needs of older Americans include:

  • Motivating older consumers to integrate considerations of health care quality into their decisionmaking about health care coverage, which has traditionally been dominated by concerns about costs and covered services, in particular:
    • Building consensus on key messages needed to reach and activate this audience, and creating a multi-media, ongoing campaign to get those messages across.
    • Recognizing the diversity of the audience, and segmenting our motivational messages, data presentations, and decision support in terms of both presentation and dissemination strategies.
  • Providing quality information about health care providers and facilities as well as treatments.
  • Finding ways to further simplify, shorten, and disaggregate presentations of data so they do not create an overwhelming cognitive burden.
  • Finding ways (and resources) to increase the use of non-print media such as TV, radio, audiotapes, and slide presentations to address limitations faced by older people.
  • Learning more about those who currently help older people make health care decisions, and developing materials and dissemination strategies aimed directly at them.
  • Most important of all, developing a sustainable and well-trained infrastructure of information intermediaries who can provide older people and those who help them make decisions with help in engaging with, understanding, and applying comparative health care quality information.

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Distinctive Characteristics of Older Consumers

To be effective at informing older consumers about health care quality, it is essential to keep in mind how this audience differs from an audience of younger consumers, and how they vary as a group. This section summarizes these characteristics.

Demographic Characteristics

In mid-2000, there were 34.8 million Americans 65 years of age and older. This represents 12.6 percent of the population.1 That number is expected to double by 2030 to 69.4 million,2 at which point older people will represent about 20 percent of the population. Slightly over half of the current over 65 population (18.2 million) are 65 and 74 years of age; an additional 12.3 million (or 35.4 percent) are 75 and 84; and 4.3 million (or 12.4 percent) are 85 or older.1

Women predominate in this age group, and given the higher life expectancy of women, their predominance increases with age.1 Older men, however, are more likely to be married (75 percent compared to 43 percent) while older women are more likely to be widowed (45 percent compared to 15 percent).3 Not surprisingly, therefore, noninstitutionalized men 65 and over are most likely (80 percent) to live in family settings, 73 percent with a spouse, while only 41 percent of older women live with a spouse and another 17 percent with other family members.4 Women are more likely than men to live alone.4

Older Americans are wealthier than younger Americans. In 1993, the median net worth of older households was $86,300, above the U.S. average of $37,600.5 Nevertheless, the vast majority of individuals 65 and over have moderate or low incomes. Thus, only 22 percent of individual older persons reporting income in 1998 reported an annual income of $25,000 or more; the median annual income for those 65 and older was $13,7686.

When we look at household income, we find that the median income for families headed by a person 65 or older was $31,568 in 1998; 37 percent of these families had household incomes less than $25,000 per year.6 This means that the disposable income available to many older Americans, to pay for health insurance premiums and out of pocket health care costs, is quite low. The proportion of older persons living below the Federal poverty level (FPL) in 1998 was the same as those 18 to 64, 10.5 percent, or 3.4 million older people. However, an additional 2.1 million older people (6.3 percent) are considered "near poor," i.e., living between 101 and 125 percent of the FPL. Altogether, therefore, nearly one in six older Americans are poor or near-poor.7

Older Americans are less likely to have completed high school than are adults over 25 as a whole (67 percent compared to 82.8 percent), and also are less likely to have at least a college degree (15 percent compared to 24.4 percent).8 Educational levels overall are increasing over time; in 1970 only 28 percent of older Americans had completed high school.8 However, serious problems of literacy and health literacy, discussed below, remain.

While in the American population as a whole, 17.5 percent were non-white as of July 1998, 15.7 percent of Americans 65 and older were non-white. Similarly, while 11.2 percent of the American population were of Hispanic origin in 1998, only 5.1 percent of older Americans were of Hispanic origin.9 The ethnic profile of the older population is expected to grow more diverse over time. For example, the middle series estimates of the U.S. Census for 2025 project that the proportion of the population 65 and over that is of Hispanic origin will have nearly doubled to 9.7 percent.10 The incomes of non-white older Americans, and their educational attainment, are lower than that of white older Americans. Thus, median household income is $22,102 for older African Americans and $21,935 for Hispanics.6 Nearly half of older African American women who live alone also live in poverty.7 Similarly, only 43 percent of African Americans 65 and older, and 30 percent of Hispanics, had completed high school.8

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Cognitive Capacity

The 1992 National Adult Literacy Survey (NALS) tested the prose, document, and quantitative literacy of Americans. Overall, they found that 44 percent of adults age 60 and over were "functionally illiterate." More specifically, NALS found that:

  • 71 percent of this group demonstrated limited prose literacy, compared to 41 percent of adults under 60.
  • 68 percent of the older group had difficulty in finding and processing quantitative information in printed materials, compared to 42 percent of adults under 60.
  • 80 percent of those age 60 and over had difficulty with document literacy, which is associated with activities such as filling out forms, reading and following directions, and using schedules.11

Literacy levels are lower for the older old than for the younger old.11 NALS found that older individuals overestimate their literacy skills, thinking they perform as well as younger people.11 While many respondents to NALS reported getting help from family or friends with literacy tasks, fewer do so than the data indicate could use the help.11

Levels of "health literacy" are lower among older Americans.12 Williams, Parker, and Baker found that 80 percent of those 60 or older seen in two public hospitals had inadequate health literacy.13 Jackson and colleagues found, in a study of patients at public clinics, that three out of four patients 60 years or older read at a level below grade four, i.e., less than needed to understand prescription labels or most written health informational materials.14 Davis et al. found that 39 percent of women who read below the third grade level could not explain why women are given mammograms.15

In general, it is not clear whether lower levels of literacy in general, and health literacy in particular, are a result of age-related declines in cognitive functioning (for example cognitive process speed)16 or cohort-related differences in educational attainment and in the life-long use (and thus maintenance or development) of literacy skills. It may well be a combination of the two factors. In any case, these literacy levels are the reality faced today by older Americans and those who are trying to provide them with comprehensible and usable information on health care quality.

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Health Status Characteristics

The health status of older Americans is, of course, not as good as that of Americans in other age groups. Thus, the most recently available information from the National Health Interview Survey (NHIS) indicates that within the noninstitutionalized population of people 65 and over, 28 percent rated their overall health status as fair or poor, compared to 9.2% for all persons.17 However, those 65 and over also vary widely in their health status and utilization of health care services. The proportion reporting fair or poor health increases with age and minority status. Thus over half of African American men 85 or older report fair or poor health.16

Chronic conditions are highly prevalent among older Americans. According to the NHIS, in 1995:

  • Most persons 70 years of age or older had arthritis.
  • About one-third had hypertension.
  • More than a quarter had heart disease.
  • 11 percent had diabetes.
  • 11 percent had respiratory conditions such as asthma, chronic bronchitis, or emphysema.
  • 9 percent had ever had a stroke.
  • 4 percent currently had some form of cancer.16

Among older Americans, having poor health status and in particular a diagnosed chronic or other condition has been found, in focus group research, to lead to greater interest in health care quality information.18,19,20 On the other hand, however, conditions that relate to impairments in functioning can also limit the ability of older Americans to access health information in various forms. Specifically, the NHIS found that 18 percent of noninstitutionalized Americans 70 and over were visually impaired, while one-third of were hearing impaired. Both visual and hearing impairments increase with age. Thus, over 31 percent of those 85 and over report a visual impairment and half report a hearing impairment.21 These sensory impairments, of course, have an effect on the types of media that can be used to convey information.

Older people are also more likely to have functional limitations that can interfere with their ability to access and use information. In general, most recent detailed data indicate that overall about 20 percent of noninstitutionalized persons 70 and over will have some degree of functional limitation.22 Disability levels vary with gender, age, and race. In particular, the NHIS reports that in 1995, 2.4 million persons in the civilian, noninstitutionalized population 65 and over reported a mobility limitation.23 About 5 percent of those 65 to 74 had a mobility limitation, compared to 11.1 percent of those 75 to 84 and 21.9 percent of those 85 and over.22 Mobility limitations, in addition to their more general relationship to social isolation, can make it difficult for older people to participate in events and take advantages of services that require leaving home.

Finally, in addition to literacy problems, problems with memory and cognitive impairment create a subgroup of older Americans who will have significant difficulty in taking advantage of virtually any form of information. When the nature and extent of such problems are acknowledged, and support from family, close friends, or trusted professional advisors is available, the latter may become the "audience" for health care quality information. In 1998, the percentage of older adults with moderate or severe memory impairment ranged from about 4 percent among those 65 to 69 to about 36 percent of those 85 or older. Sixteen percent of men and 12 percent of women 75 to 79 have a moderate or severe memory impairment.24

Consistent information on the prevalence of general cognitive impairment is more difficult to find, in part because it is sometimes measured as dementia and sometimes as cognitive impairment with or without dementia. In addition, there are differences in measurement methods, and an absence of samples based on a general population of Americans. One high estimate of a sample in a population of older community residents found 33 percent with mild impairment and 8 percent with severe impairment.25 A considerably lower estimate among a multiethnic cohort of municipal retirees age 60 and over found an age-adjusted prevalence of 1.85 percent.26 Another article indicated that as many as 45 percent of persons age 85 and older have significant cognitive impairment and dementia.27 Whatever figure is accurate, it is clear that cognitive functioning must be taken into account for this population, especially among the older old.

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Choice Environment

Almost all persons 65 and over are covered by the Medicare program, which is the only major social insurance program in the country that provides virtually universal health coverage to any group of Americans. Because of Medicare, older Americans almost always have health insurance. Unless they choose to join a network-based health insurance plan, they typically have as much choice of provider as is generally available where they live. Thus, information on the quality of health care coverage and provider options can actually be used by older people since they often have real choices to make. Because of changes in the program over the last 15 to 20 years, they also have more health insurance choices of than most other Americans, and in particular have a legislatively protected access to a "fee-for-service" (ffs) insurance plan, i.e., "original Medicare."

However, older Americans also face a more confusing choice environment than others in the population:

  • Because of the inherent (legislated) complexity of Medicare itself.
  • Because limitations in the basic Medicare benefit package lead the vast majority of eligibles to acquire additional coverage.
  • Because of additional (also legislated) choices that have become available.
  • More recently because some choices are not emerging or are disappearing.

The Medicare benefit package is inherently very complex because of historical artifacts such as distinctions between Part A and Part B, the concept of a "benefit period" for hospital coverage, and the introduction of opaque "medical necessity" criteria into decisions about coverage for long-term care services. In addition, as Medicare makes changes in payment policies, providers, in their conversations with consumers, sometimes attribute decisions they make (such as the timing of a hospital discharge or accepting a home health patient with complex needs) to the Medicare program's rules rather than to their own strategic considerations in response to shifting financial incentives. This further confuses people covered by the program.

Medicare's current benefit package leaves older people vulnerable to considerable out-of-pocket expenditures for deductibles, co-insurance, costs of services not covered by Medicare (in particular outpatient prescription drugs and custodial care in nursing homes), and costs of services beyond Medicare limits. Overall, Medicare covers slightly more than half the total health care expenditures of people 65 and over. As a consequence, about 90 percent of people on Medicare have some additional form of insurance to supplement their Medicare coverage. Most recent figures indicate that:

  • About 30 percent have supplementary insurance from their own or a spouse's former employer (retiree health benefits).
  • A similar percent purchase individual supplements, known as Medigap policies.
  • 16 percent belong to a Medicare managed care plan.
  • About 12 percent are dually eligible for coverage from Medicaid in some form or another.

Given this situation, it is not surprising that many older people are not terribly clear about what the Medicare program is, and what kind of insurance they do and do not have. For example, those with retiree benefits (which often mimic benefits available to active workers) might sometimes view their employer as the primary source of their insurance, or not recognize that "Medicare" is only part of their coverage.

Congress first made the choice of a "risk-contract" Medicare health maintenance organization (HMO) available to older Americans in the mid-1980s. Then, in passing the Balanced Budget Act of 1997 (BBA), Congress made the Medicare program potentially still more complicated by adding to existing HMO and Point of Service (POS) options new "Medicare + Choice" options, including both existing plan types such as preferred provider organizations (PPOs) and medical savings accounts (MSAs), as well as plan types that had never been offered to the general population, such as "private fee-for-service plans."

The legislated choice environment, however, does not necessarily match the de facto environment. Few of the new types of products are being offered. The first private FFS plan is now being marketed in part or all of 25 States for the year 2001. The only provider sponsored organization (a type of HMO) has withdrawn from the program. Perhaps most important, in response to changes in payment policies, difficulties in putting together provider networks, and what the industry perceives as substantial new regulatory and data collection burdens (including requirements around quality information), many HMOs have either withdrawn from the program entirely, withdrawn from markets with relatively low payment structures, or revamped their benefit structures and premium prices. This has added considerable volatility to the choice environment. Given the relative risk-aversion of most older people, withdrawals and plan changes have contributed to significant unwillingness to join Medicare HMOs, especially in parts of the country with lower levels of managed care penetration overall. It may also lead to a reduced sense of self-efficacy with respect to making a choice at all, and a consequent desire to avoid information about choices as well.

There is one other distinctive characteristic of the choice environment of older people. Currently, and for the next couple of years, people on Medicare can make significant changes in their coverage at any time. Thus, they can leave one Medicare HMO and join another, or return to "original" Medicare. The BBA provisions call for a move toward an annual open enrollment period like those experienced by the employed population, with only limited ability to change plans (e.g., during the first 90 days of the new calendar year). This would create a major change in the choice environment that could actually facilitate the dissemination of comparative information by providing a focal point in time for such efforts. Nevertheless, this approach would still leave people on Medicare free to change Medigap policies at any point in time.

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Cohort Characteristics

People over 65 not only represent part of the age distribution, they represent a "cohort" of people (actually a few cohorts) who grew up during particular periods of history that were dominated by particular events and social norms and values. Market researchers in particular have considered cohort as well as age to be an important way to distinguish different groups in the population, including the elderly. For example, Rentz found that in forecasts of product consumption, those based on cohort rather than cross-sectional analysis performed more effectively; Rentz notes that this approach can be extended far beyond other kinds of forecasting.28

Metz and Stephens also note that older adults have needs and behavior that not only vary from those of younger adults, and but from adults within their age group too, as a result of cohort influences:29

  • The "old old," those 85 and over today, were born during or before World War I and came of age during the depression or World War II.
  • The "old," those between 75 and 84, were born during the "Roaring Twenties," but came of age during the depression.

Both these groups were likely to have fought in World War II. Today's "young old," in contrast, were born during the depression and grew up during World War II, but came of age in the post-war 1940's and were marrying and starting families in the 1950's, periods characterized by such historic events as the Korean War and anti-Communist fervor, as well as by a fairly prosperous life (for the mainstream) based on what we now consider "traditional family values."

Those who experienced the Depression (and thus widespread poverty and high unemployment) are aware of the potential for financial losses and of the need to get value for what you spend. Those who experienced World War II and to a certain extent even the Korean War (and thus patriotic fervor, violence, and loss of loved ones) are aware of the potential for personal losses, and of the need at times to sacrifice.

Some consider that these cohorts are more compliant with respect to authority in general (at least in comparison to the 1960's and 1970's generations), and the authority of physicians and other health professionals in particular. Medicine as practiced in this cohort was far more paternalistic than it is today, but also somewhat more personal. Gender roles were far more distinguished, and women were not as experienced in making certain kinds of financial decisions (such as what health plan to choose). The overt quest for financial gain in the health sector (both insurance companies and to some extent providers) may well be perplexing and distressing to this group.

Order and discipline is considered important to many older Americans, who are used to taking responsibility for things themselves rather than attributing it to others. Good manners are also highly valued. This cohort has been taught to be polite and considerate to others, and to receive, as older people, respect and dignity. Conflictual situations and negative statements do not feel comfortable. Many were taught that if you couldn't say something nice, you shouldn't say anything at all. Bernhardt, for example, finds that the "complaining" behavior of older persons differs from the population as a whole, and in particular that many older consumers believe complaining will not accomplish anything, is not worth the effort, or will take too much time.30 Fairness is also valued, and data presentations that seem biased are discounted.

Perhaps as important, incoming cohorts of older Americans, beginning with, but probably not ending with, the "baby boom" generation, may well be drastically different with respect to their orientation toward authority and technology, their willingness and ability to be proactive with respect to their own health, as well as their ethnic mix, income, and educational levels. Schiffman and Sherman, for example, see the emergence of what they call "new-age" elderly, who are more confident when it comes to making consumer decisions and more willing to accept new products and services if the anticipated consumption is perceived to provide an opportunity to have more control over their lives.31 Some "new age" older Americans are almost certainly already among us!

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