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Discussion Paper

Quality Information for People with Special Health Care Needs

Issues in Implementing the Research and Action Agenda

By Christina Bethell, Ph.D., FACCT—The Foundation for Accountability

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.


Who Are People with Special Health Care Needs?
Motivation for a Focus on People with Special Health Care Needs
Demand for Quality Information: Educating and Motivating Consumers
Supply of Quality Information: Developing Measures and Communicating Results
Market Characteristics

The tasks to meet consumer needs for health care quality information that were outlined in the 1998 Making Quality Count conference reports and the 2000 Consumer Information Workgroup Agenda1,2 can uniquely impact people with special health care needs. Because these people are also represented in the other focus areas of the New Directions conference (e.g., older Americans, the employed, those with communication challenges), this briefing paper focuses on overarching rather than sub-population issues that arise in meeting the needs for health care quality information of adults and children with special health care needs.

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Who Are People With Special Health Care Needs?

People with special health care needs are typically characterized along three distinct dimensions5-7:

  • Service Need: People who require health and related services of a type or amount beyond that required by people in general.
  • Functional Impact: People who experience current impairment of functioning and/or quality of life (e.g., mobility, sensory, intellectual limitations).
  • Presence and Duration of Condition: People who report an ongoing physical,mental or developmental condition lasting or expected to last at least 3-12 months. These conditions may or may not be currently active or have a formal diagnosis. To qualify as a special health care need, most definitions require that the condition have an ongoing functioning or service-use impact.

This conceptualization of people with special health care needs is broad enough to encompass:

  • Common and often mild chronic health conditions (e.g., allergies, arthritis, and hypertension).
  • Complex and manageable health issues (e.g., asthma, diabetes).
  • Complex and difficult-to-address health issues (e.g., lupus, cerebral palsy, major functional disabilities).

Using sources of data that incorporate all or most of the definitional components listed above, we estimate that in the general United States population about 17-22 percent of children7 (6-8 million children) and 35-50 percent of adults5-6 (69-95 million adults) have a special health care need (Table 1; Text Version). Variations in the estimated prevalence of such needs for adults is accounted for by alternative definitions. Most notably, non-condition-specific, consequences-based definitions show a rate of about 50 percent while diagnostic data-based definitions show rates of about 35 percent (65 percent for people over age 65).

Experts tend to prefer a consequences-based approach for estimating prevalence because so many health conditions that have a functional and service-need impact on individuals either go undiagnosed or are not properly recorded in health records. For example, upwards of 50 percent of people with depression and diabetes either go undiagnosed or their diagnosis is not recorded in medical records and/or administrative data bases.

Prevalence rates increase sharply for people over 45 years of age. Using a conservative definition (requiring that a person experience a functional impact), estimates range from 25 percent for people age 45-55 years to 71 percent for people over the age of 80 years.5 When we narrow the definition further to those individuals with a serious functional or activity limitation, the prevalence rates reduce to 2-4 percent for children and 10-14 percent for adults (33 percent for those over age 65 years). In addition, 5-10 percent higher rates of special health care needs in nonwhite and lower income populations are consistently observed in the National Health Interview Survey (NHIS) and Survey of Income and Program Participation (SIPP). It should be noted that none of these estimates include people at-risk for a special health care need.

Table 1. Alternative Estimates of the Proportion of the Noninstitutionalized Population with a Special Health Care Need

Definition and Source Children Adults
People who experience consequences for an ongoing health condition (based on national and statewide samples using FACCT screeners) 17-22% (under age 13), 6-8 million 49% (over 18), 95 million
People with a diagnosis appearing in administrative data (based on 3M Clinical Risk Groups System) Children: 7-11%, (under 18) Adults: Approximately 35%, (65% for Medicare only—24% of these are more serious conditions)
People with a Disability that Has any Functional Impact
Children, 1-18 years (NHIS) 5-7% NA
Children, 6-14 years (SIPP) 12.7% NA
Young adults, 15-21 years (SIPP) 12.1% NA
Adults, 18+ years (NHIS) NA 15.1%
Adults, 22+ years (SIPP) NA 25.6%
People with a Disability that Has a Serious Functional Impact
Children, 6-14 years (SIPP) 1.9% NA
Young adults, 15-21 years (SIPP) 3.2% NA
Adults, 18+ years (NHIS) NA 10.3%
Adults, 22+ years (SIPP) NA 13.8%

Sources: FACCT Screener Data: Bethell and Read, 2000; Bethell and Lansky, 2000, FACCT—The Foundation for Accountability; 3M CRG Data: John Muldoon, National Association of Children's Hospitals and Related Institutions (NACHRI), 2000; Estimates for people with functional impact: National Health Interview Survey (NHIS) results—1994, National Center for Health Statistics; Survey of Income and Program Participation (SIPP) results—1994-95, McNeil, J, 1997—US Department of Commerce, Bureau of the Census.

Motivation for a Focus on People with Special Health Care Needs

"Living with an illness is a full-time job. Even if you don't have the illness but someone close to you does—which is true for most of us, I bet—you live with it."

Focus Group Participant, FACCT, 1998
Federal Employee Health Benefits (FEHB) Quality Information Project

There are five reasons to focus uniquely on consumers with special health care needs for purposes of quality measurement and reporting:

  1. The health care needs of this population often differ from the general population in the type, scope, frequency, coordination and duration of care needed and make quality information especially relevant for this population.
  2. These consumers have increased exposure to all aspects—both the good and bad—of health systems or providers, making quality measures based on the experience and outcomes for this population more sensitive indicators of quality.
  3. These consumers account for the majority of health care costs. Quality improvements that may be stimulated by measuring and communicating about quality for this population are expected to be eliminated or more fruitfully redirected through improvements in quality.
  4. Care for people with ongoing health conditions is often inadequate (about 40-60 percent of optimal) and is uneven across condition groups (e.g., diabetes versus depression) and population subgroups (low versus higher income).8-10
  5. People with special health care needs may be more educated about quality and more motivated to seek out information about it. Some qualitative findings suggest that consumer quality reports help elicit the cooperation of people with special needs to examine and work to improve health care quality10-11,40. In this way, quality measurement and reporting may even play some role in improving quality for this population.

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Demand for Quality Information: Educating and Motivating Consumers

Despite variation in the impact, severity, and type of health care needs represented within any broad definition of people with special health care needs, adults and caregivers of children with a wide range of special needs consistently express high interest in information on common aspects of health care quality. This observation is based on a wealth of qualitative data from over 85 focus groups conducted by the Foundation for Accountability (FACCT), 49 of which were with people with special health care needs, as well as groups conducted by others.10-11,41 Overall, the people with special health care needs or their caregivers may already be more educated about health care quality and more motivated to obtain comparative quality information as compared to the general public.

After addressing access to care—which is the most immediate aspects of good quality care that they want to know about—people with special health care needs and their caregivers report an interest in quality information that falls into three broad categories.12-20

  1. Communication and Partnership: Getting needed information about health and health care, shared decisionmaking, good communication and relationship with providers who know them, and continuity and coordination of care.
  2. Appropriate Care: Getting needed tests, medicines, procedures, and self-care education and support.
  3. Results of Care: Successful control of symptoms (e.g., respiratory and pain symptoms), control of risk factors (e.g., cholesterol, blood pressure) and restoration and/or maintenance of functioning.

Consumers with special health care needs often make explicit that they view partnerships with their providers—good communication, shared decisionmaking, self-care education, and care coordination—as precursors to getting the right diagnosis and treatment, to understanding and adhering to medical recommendations, and to achieving good outcomes. They also explain that good quality requires that providers consider a patient's psychological, emotional, and social context as relevant factors with real and often immediate implications for their health, results of care and quality of life.

Consumers with special health care needs commonly report:

  • Difficulty accessing the specialized services they need.
  • Dealing with providers who are hurried and/or unavailable.
  • Being spoken to using terminology and language—jargon—that creates a basic and unacknowledged barrier to communication.
  • Feeling discouraged from sharing information they view as important to good diagnosis and treatment decisions and the understanding of and adherence to medical advice.
  • Not understanding their condition, goals for treatment, why medical recommendations are made, or how to follow these recommendations.
  • Not having options presented or discussed.
  • Little consideration of their day-to-day lives or cultural context, and how this affects the ability to stay healthy and follow medical advice.
  • Avoidance of hard, but important, issues—especially if they are personal, emotional, or spiritual.
  • Experiencing physical environments for the carrying out of medical inquiries or procedures that are unnecessarily uncomfortable, cold, or lacking in privacy.

Overall, consumers indicate that their strongest interest in quality information is to select individual providers. Because such information is often unavailable, consumers report trial-and-error experiences with providers and treatment regimens as the costs of eventually finding good quality care. It is this trial-and-error process, however regrettable, that people often say makes them better advocates for quality care.

This population of experienced consumers also has a strong interest in health-plan quality measurement, suggesting that they have a higher expectation of the health plan's role in health care than does the general population. This may be attributable to the greater needs for coordination of care and specialized services for people with special needs—aspects of care that the health plan can more readily influence.

A recent study of health care in America, funded by the Robert Wood Johnson Foundation, showed that people with special health care needs or their caregivers are more likely than the general population to indicate a desire for quality information when making provider and plan selection decisions. They also seek information about their health care independently, through external sources (approximately 60 percent versus 80 percent reported likelihood).9 Interestingly, the highest scores on interest in and motivation to seek out quality information were observed for health agents, such as caregivers of people at the end of life and parents of children with asthma.

Regarding specific messages that may further this motivation, a recent FACCT study to test messages that may motivate consumers to demand, seek out and use quality information, we observed that negative messages such as "if you don't care, no one will" and sense of control messages such as "knowledge is power" are more convincing and motivating to these consumers than the generic "quality matters" and "quality varies" messages.11 To illustrate, positive messages would point out the benefits of using quality information ("People who pick higher quality plans are more likely to get better care") whereas negative messages emphasize the risks of ignoring this information (e.g., "Millions of Americans have died unnecessarily due to medical mistakes. Pay attention to quality because what you don't know about the quality of your health plan/provider can kill you.").

"The amount and nature of risk perceived by the customer during purchase has been recognized as important in defining the customer's information needs and in predicting the acquisition, transmission and processing of information during the decision-making process."

Dholakia, 199721

Though people and caregivers of people with special health care needs may be more educated about quality and more motivated to seek out quality information, they may or may not be more likely to use this information to scrutinize and change their current health care plan or provider. This may depend largely on the importance and strength of their existing health care plan/provider relationships.

Research results are mixed on the relationship between an individual's current level of knowledge and his or her involvement with a product (in this case health care) and willingness to use new information about that product to evaluate and alter existing purchasing decisions. Some research suggests that the level of prior involvement is inversely related to the propensity to change products based on new information about quality or performance.22-23 Other research suggests that such people will be more likely to seek and use such information to make decisions.24

"The less previous experience consumers have in purchasing a particular class of items, the more effective will be consumer education efforts aimed at setting norms about decisionmaking criteria."

Zaltman and Wallendorf, 197923

Several issue-specific questions arise as we proceed to educate and motivate people with special health care needs:

  1. Targeting: Should consumer education efforts be narrowly directed at people with special health care needs or should efforts for these consumers be subsumed within broader consumer education efforts? Similarly, given that there are common issues across people with many different kinds of special health needs, should/can we create general "special needs" educational and motivational strategies or do we need to proceed along a condition-by-condition track?
  2. Timing: Many observers assert that we should not bother educating and motivating consumers unless there is information to provide or actions they can take. How soon will we have meaningful information for these consumers and what can/should be done to educate and motivate people with special health care needs in the mean time?
  3. Messages: What messages about health care quality are purchaser-and consumer-organization sponsors of quality information willing to send to consumers? If we learn that quality is, in fact, much lower than desired and that negative messages are most effective in motivating consumers, can we expect sponsors to send these messages? If positive messages such as "knowledge is power" are preferred, is there any risk of falling into a "blaming the victim" mentality (i.e., if you don't get good care, it's your fault)?
  4. Existing Intermediaries: Which existing sponsors or agents should assume the role of "educator" with respect to quality information? Is it important and realistic to expect these sponsors and agents to coordinate and send common messages? Given the provider linkages and focus on access to care that can predominate in disease-specific patient groups, is it a viable strategy to link with these groups for purposes of educating and motivating people with special health care needs?
  5. New Efforts: Have we explored all the options for educating and motivating consumers? Given the constraints that existing sponsors may have, is there a need/role for a non-government-, nonpurchaser-, nonprovider-based grassroots effort to educate consumers about quality (e.g., a Patient Power type of entity)?

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