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  Vol. 164 No. 16, September 13, 2004 TABLE OF CONTENTS
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Cost-Related Medication Underuse

Do Patients With Chronic Illnesses Tell Their Doctors?

John D. Piette, PhD; Michele Heisler, MD, MPA; Todd H. Wagner, PhD

Arch Intern Med. 2004;164:1749-1755.

ABSTRACT

Background  Although many chronically ill patients underuse prescription medications because of cost concerns, we know little about their discussions with clinicians about this issue.

Methods  Nationwide survey of 660 older adults with chronic illnesses who reported underusing medication in the prior year because of cost. We assessed whether patients discussed cost-related medication underuse with clinicians, reasons that some patients did not talk with clinicians about this problem, how clinicians responded when this issue was raised, and how helpful patients perceived clinicians to be.

Results  Two thirds of respondents never told a clinician in advance that they planned to underuse medication because of the cost, and 35% never discussed the issue at all. Of those who did not tell a clinician, 66% reported that nobody asked them about their ability to pay for prescriptions and 58% reported that they did not think providers could help them. When patients talked with clinicians about medication costs, 72% found those conversations helpful. However, 31% reported that their medications were never changed to a generic or less expensive alternative, and few patients were given other forms of assistance such as information about programs that help pay drug costs (30%) or where to purchase less expensive medication (28%). Patients were most likely to find clinicians helpful if clinicians provided free samples, asked about problems paying for prescriptions, and offered advice about how to pay for patients' current regimens.

Conclusions  About one third of chronically ill adults who underuse prescription medication because of the cost never talk with clinicians in advance, and many never raise this issue at all. Clinicians should take a more proactive role in identifying and assisting patients who have problems paying for prescription drugs.



INTRODUCTION
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 •Introduction
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Patients who are concerned about out-of-pocket medication costs often restrict their use of prescription drugs.1 Since patients with chronic illnesses often take multiple medications, they are particularly susceptible to medication cost pressures.2 One recent survey found that 14% of heart failure patients with prescription drug coverage chose not to fill a medication prescription in the prior year because of the cost, and 25% of those with no medication coverage failed to fill 1 or more prescriptions.3 Similar rates were found among patients with diabetes and hypertension, and rates among individuals with low incomes are especially high.1

Chronically ill patients who restrict their medication use because of cost often restrict essential medications such as hypoglycemics, diuretics, bronchodilators, and antipsychotics.4-7 This underuse has been associated with serious health consequences including increased emergency department visits, nursing home admissions, acute psychiatric hospitalizations, and decrements in self-reported health status.4, 7-10

Epidemiologic studies of cost-related medication restriction have important implications for the development of policies to assist patients with their medication costs. The significance of these studies for patient care, however, is less clear. Physicians could use information about risk factors for cost-related underuse to identify patients who are at greatest risk and target intervention efforts accordingly. Unfortunately, patient-level predictions based on these population-based models will inevitably be inaccurate much of the time. A more effective strategy would be for physicians and nurses to be attuned to all patients' potential medication cost concerns and engage in conversations on an as-needed basis. Physicians can play an important role in determining patients' medication-related knowledge, beliefs, and adherence.11-13 More generally, patient-physician communication can be an important determinant of self-management behavior and health outcomes.14-16 It is therefore crucial that physicians enter into a dialogue with their patients who face problems paying for prescription drugs. Whether such discussions are currently taking place and whether patients find such conversations helpful is unknown.

Using a large sample of older adults with chronic illnesses, we examined whether patients who underuse prescription medications because of cost concerns discuss this problem with doctors and nurses. We identified the characteristics of patients who are least likely to inform their providers, the reasons patients do not tell their clinicians about medication cost problems, and patients' satisfaction with various clinician responses when this issue is raised.


METHODS
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 •Introduction
 •Methods
 •Results
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STUDY PARTICIPANTS

The study was based on surveys completed by a panel of adults living in the United States. Panel members were identified and recruited by Knowledge Networks (KN) (Menlo Park, Calif) using random digit dialing and a sampling frame consisting of the entire US population with an assigned telephone number. The purpose of the KN panel is to provide researchers from government, academia, and private industry with a large national sample of adults for whom detailed information about health, economic, and demographic information is known. Panel members complete surveys on a wide range of topics. A strength of the panel is that large numbers of surveys can be administered rapidly relative to more traditional recruitment methods, so that studies are available while important national policy issues (eg, the ongoing debate about prescription drug costs and coverage) are being considered.

After excluding nonresidential and disconnected numbers, individuals with a valid postal address were approached via mailings and telephone calls. Potential panel members were offered WebTV and free monthly Internet access in exchange for completing 2 to 4 brief web-based surveys each month. At the time of this study, the panel's acceptance rate was approximately 36%, and 40 000 individuals were participating.

Extensive analyses by independent researchers have compared the panel's characteristics to the US Census Bureau's Current Population Survey, the National Health Interview Survey, and an independent random-digit dialing sample. On most sociodemographic parameters, key health behaviors (eg, smoking), and the prevalence of chronic illnesses, the KN panel has consistently been found to be within a few percentage points of other national estimates.17-18 Neither panel refusal rates nor dropout rates have been found to result in significant distortions in the distribution of race or sex. Compared with Census Bureau data, the KN panel has more married individuals (64% vs 60%), fewer individuals with at least some college education (29% vs 32%), and fewer households with incomes greater than $75 000 (18% vs 25%). Data based on surveys of KN panel members have been used as the basis for prior population-based health studies published in peer-reviewed medical and public health journals.19-23

Institutional review boards at our respective institutions approved the present study. We used sociodemographic and health status information about panel members to identify all 5644 individuals 50 years and older who reported taking prescription medication for diabetes, depression, heart problems, hypertension, or high cholesterol. After 3 personalized e-mail requests, 4264 people completed the on-line informed consent and the questionnaire, 185 of whom were excluded because they reported in the survey that they were no longer taking medication for any of the 5 index conditions. Thus, the CASRO (Council of American Survey Research Organization) response rate24-25 for the survey among panel members was 76%, that is,
(4264–185)/{[4264–185] + [1380 x (4079/4264)]}.
Compared with nonrespondents, respondents were more likely to be white (88% vs 81%; P<.001), older (mean age, 65 vs 63 years; P<.001), and to have some college education (66% vs 60%; P<.001). Respondents and nonrespondents were similar with regard to sex (P = .29), home ownership (P = .44), marital status (P = .16), and income (P = . 41). In all analyses, we used poststratification weights to adjust the distribution of respondents to match the distribution of the US population on age, sex, race/ethnicity, education, region, and metropolitan residence, thereby correcting for oversampling and survey nonresponse.26-27 The Bureau of Labor Statistics Current Population Survey for October 2002 provided data on the distribution of the US population.28

In the survey, respondents were asked whether they took prescription medication for each of 16 chronic health conditions: arthritis; asthma; chronic back pain or sciatica; high cholesterol; chronic obstructive pulmonary disease (chronic bronchitis, emphysema, or "COPD"); depression; diabetes; heartburn, acid reflux, or irritable bowel syndrome; atherosclerosis (blocked arteries in the heart, angina, or chest pain from heart disease); heart failure; high blood pressure or hypertension; myocardial infarction (heart attack); migraine headache; osteoporosis; stomach or duodenal ulcers; and stroke. On a condition-by-condition basis, participants reported whether they took less of their medication in the prior 12 months because of the cost. In the present study, we limited analyses to participants reporting 1 or more instance of cost-related medication underuse. Twelve of these patients were excluded from the final analysis because they reported no outpatient medical visits in the prior year, and therefore had no opportunity to talk with a clinician about medication costs.

SURVEY DESCRIPTION AND VARIABLE CREATION

Respondents who reported 1 or more episodes of cost-related medication underuse were asked: "In the prior 12 months, how often did you do any of the following? (1) . . . tell a doctor or nurse in advance [emphasis in the survey] that you were going to have to take less medication or not fill a prescription because of the cost? (2) . . . tell a doctor or nurse after you had taken less medication or not filled a prescription because of the cost? And (3) . . . ask a doctor or nurse for help in reducing your prescription medication costs?" In the present study, we examined whether patients reported ever telling a clinician in advance that they planned to take less medication because of the cost (yes/no) and whether they reported any conversation with clinicians (yes/no). Patients who reported never talking with clinicians were asked several close-ended questions regarding their reasons for not discussing their medication cost problem. Patients who did report talking with a clinician were asked whether they received various forms of assistance. These patients also were asked "In general, how helpful were your doctors and nurses when you talked with them about problems paying for your medication?" and responded using a 5-point Likert scale, where 5 indicates "They were always helpful" and 1 indicates "They were never helpful."

The variables we examined as possible predictors of talking with clinicians about medication cost problems were participants' self-reported race (white vs nonwhite), sex, age, educational level (≤high school diploma vs ≥some college), and annual household income (<$20 000, $20 000-$39 999, $40 000-$59 999, or ≥$60 000). We also examined indices of patients' frequency of outpatient visits in the prior year (1-2, 3-6, or ≥7), and total number of current prescription medications (1-2, 3-6, and ≥7).

STATISTICAL ANALYSIS

We used standard tabulation techniques to identify the proportion of patients who talked with providers about medication cost problems, the reasons some patients did not have these conversations, and the frequency of various clinician responses. We used multivariate logistic regression to identify independent predictors of whether patients talked with a doctor or nurse about medication costs. We also fit a logistic model to identify the adjusted association between patients' reports of clinician assistance and patients' perception of whether their clinicians were helpful "most of the time" or "always" when discussing medication cost problems. This multivariate model controlled for patients' sociodemographic characteristics, number of medications, and number of outpatient visits.

In preliminary analyses, we examined indicators of specific chronic diseases and patients' total number of diseases as potential covariates. Individual diseases had no independent impact on any of the outcomes of interest. Patients' total disease burden was highly collinear with their total number of medications and outpatient visits. Given the focus of the study, these latter variables were retained in the final models because of their potential direct relationship to patients' likelihood of discussing medication cost problems and because they also serve as proxies for disease burden.


RESULTS
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PATIENT CHARACTERISTICS

Of the 4079 survey respondents taking prescription medication, 672 (17%) reported 1 or more instances of cost-related underuse in the prior year. After excluding 12 patients reporting no outpatient encounters, the final sample size was 660. These respondents were sociodemographically diverse (Table 1): 16% were nonwhite, 64% had at most a high school education, and 30% had annual household incomes of $20 000 or less. The mean ± SD age for the sample was 62.6 ± 9.4 years; 86% had 3 or more prescriptions at the time they completed their survey, and 33% had 7 or more prescriptions. Nearly 80% of respondents reported a history of 4 or more chronic health conditions, including hypertension (67%), hyperlipidemia (66%), depression (47%), cardiovascular disease (ie, a prior myocardial infarction, prior stroke, atherosclerosis, or heart failure) (40%), and diabetes (30%).


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Table 1. Characteristics of Chronically Ill Patients 50 Years or Older Who Report Underusing Prescription Medication Because of the Cost*


CONVERSATIONS ABOUT MEDICATION COST

Only 33% of respondents reported that in the prior 12 months they told a doctor or nurse in advance that they planned to use less medication because of a cost problem (Table 2). In bivariate analyses, respondents with a high school education or less were substantially less likely to tell a clinician in advance than were those with at least some college training (27% vs 41%; P = .003). Less than 50% of respondents in every subgroup shown in Table 2 reported telling a clinician in advance that they planned to use less medication because of a cost problem.


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Table 2. Prevalence and Correlates of Patients' Conversations With Clinicians About Problems Paying for Their Prescription Medications


Controlling for the number of outpatient visits, the number of prescription medications, and sociodemographic covariates, nonwhite respondents were only half as likely to report telling a doctor or nurse in advance of cost-related medication underuse compared with their white counterparts (adjusted odds ratio, 0.5; 95% confidence interval, 0.3-0.9). Respondents with at most a high school education also were only half as likely to tell a clinician in advance (adjusted odds ratio, 0.5; 95% confidence interval, 0.3-0.8). Respondents' age, sex, and income were not independently associated with telling a clinician in advance of cost-related self-restriction.

Even when taking all conversations with clinicians into account, more than one third of respondents (35%) reported that they never talked to a clinician in the prior 12 months about their medication cost problems. In the multivariate model, a greater number of prescribed medications was the only independent predictor of ever discussing the issue of medication costs with clinicians. Respondent' sociodemographic characteristics and specific illnesses such as diabetes, heart failure, or depression had no independent influence on respondents' likelihood of ever talking with their clinicians about cost-related medication adherence problems.

REASONS FOR NOT TALKING

The most common reason patients reported for not talking with a clinician about their medication cost problems was that no one had asked them (reported by 66% ± 5% SE of all those without such conversations). Most patients (58% ± 5% SE) reported that they did not think their doctors and nurses could help them with this problem. A large proportion of respondents reported that they were too embarrassed to have these conversations (46% ± 5% SE), did not think the issue was important enough to raise (45% ± 5% SE), or thought that there was not enough time during their visits (31% ± 5% SE). Also, 11% ± 3% SE reported that a lack of trust was a barrier to having conversations about medication costs. We examined potential sociodemographic correlates of these perceptions and found few consistent patterns.

CLINICIANS' RESPONSES

Clinicians responded in a number of different ways to patients' concerns about medication costs (Table 3). Most patients reported that their clinicians gave them free samples of medication (91%) or expressed sympathy about their high medication costs (73%). However, only 69% reported that a clinician ever changed one of their medications to a less expensive or generic alternative, and only 59% reported that someone had talked with them about which medications not to skip. Less than 1 in 3 respondents reported that their clinicians gave them information about potential drug payment programs (30%) or places to obtain less costly medication (28%). Only 28% of respondents reported that a doctor or nurse had ever asked whether they could afford their medication when giving a prescription, and few patients either had the number of their prescription medications reduced (11%) or were referred to a social worker or someone else with expertise in strategies for paying medication costs (10%).


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Table 3. Patients' Reports of Clinician Assistance With Medication Cost Problems and Their Association With Patients' Perceptions of Clinician's Helpfulness


Overall, respondents who did talk with a doctor or nurse about their medication cost problems found those conversations helpful: 72% reported that their clinicians were helpful always (45%) or most of the time (27%) when talking with them about problems paying for their medications. Patients who received free medication samples were more likely to report that their clinicians were helpful most or all of the time compared with respondents who did not receive samples (76% vs 29%; P<.001). Patients also were more likely to report that their clinicians were helpful if they reported that their clinicians expressed sympathy for their medication cost problems (77% vs 23%; P = .02), talked with them about which medications not to skip (79% vs 61%; P = .004), gave them information about programs that pay medication costs (90% vs 64%; P<.001), asked whether they could afford their prescriptions (89% vs 65%; P<.001), and gave them information about where to get less expensive medication (90% vs 65%; P<.001). Controlling for other clinician responses as well as patients' sociodemographic characteristics, giving free samples was the assistance patients found most helpful (Table 3). Information about programs that help patients pay medication costs and being asked whether they could afford a new prescription also were independently associated with patients' reports of clinician helpfulness.


COMMENT
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In this nationwide survey of older chronically ill adults, two thirds of patients who reported restricting their medication use because of the cost did not tell a doctor or nurse in advance and one third never informed clinicians. Because of the serious consequences of medication underuse among patients with chronic diseases such as heart failure, diabetes, and depression, instances in which clinicians are not aware of patients' medication cost problems represent missed opportunities to prevent adverse events. Patients' race and educational level were independently associated with their likelihood of talking with someone in advance of restricting their medication use; future studies should explore the reasons behind these disparities.

This study suggests that most patients who fail to alert clinicians about their medication cost problems are not asked about their ability to pay for their medication, and many perceive that clinicians are unwilling or unable to help them with this problem. Patients not asked by clinicians about their medication payment problems may be less likely to raise the issue in an outpatient visit, particularly if they believe that the problem is "not important enough to raise." In addition, patients who are not asked by providers about this problem receive a more global, negative message regarding clinicians' interest and potential ability to assist them.

Most patients who discussed their medication payment problems with a provider reported that they were given free medication samples. Other studies have found that many patients in a variety of health system types receive free samples.29-30 Although patients reported that they found samples helpful, it is unclear whether they would have found other "free" services equally useful (eg, daily pill organizers or tools to help them remember when to take each dose). Free medication samples can increase patients' out-of-pocket costs in the long term by adding treatments to their regimen that are of limited value or for which effective generic equivalents are available. Free samples represent more than $6.6 billion of the $12.7 billion cost of drug promotion in the United States; they can inflate retail costs for prescription drugs and lead providers to prescribe more expensive regimens.31-34 For all of these reasons, samples may exacerbate, rather than ameliorate, the problem of cost-related medication underuse. Physicians must remain vigilant when using free samples to balance patients' short-term appreciation and financial benefits against the long-term consequences both for those individuals and for society as whole.

Forty-one percent of patients reported getting no guidance about which medications not to skip, 31% reported that their medications were not changed to generics or less expensive alternatives, and fewer than one third reported other concrete attempts to address their medication cost problems. It is important to emphasize that these numbers represent only the percentages of patients who reported discussing medication costs with their clinicians. It is likely that the clinician responses given in Table 3 were even less common (or nonexistent) among patients who did not raise this issue. Thus, very few chronically ill patients who restrict their medication use because of the cost appear to be receiving assistance from their health care providers.

Clinicians face serious constraints on their ability to identify concrete solutions to patients' medication cost problems in the absence of significant insurance reform. Many physicians may also believe that their limited time is best spent addressing patients' medical, rather than financial, concerns; or that they lack knowledge about available programs and ways to discuss this issue appropriately. More generally, patients' financial constraints present ethical challenges for physicians striving to deliver high-quality care in concert with practice guidelines while adjusting treatment plans so that they are realistic given a patient's ability to pay.35 Nevertheless, this study suggests that many chronically ill patients with medication cost problems would value simple, concrete actions on the part of their clinicians. Although some clinicians may be reluctant to embarrass patients by raising the issue of medication costs, we found that patients who reported being asked about cost problems had significantly higher ratings of clinicians' helpfulness compared with those who were not asked. Moreover, our findings reinforce the importance of increasing clinician awareness of differences in medication costs and attention to considering cost when prescribing.36

It is important to note that some patients in the present study had moderate to high incomes and therefore may have been financially capable of paying for their prescription drugs. For example, 36% of respondents reporting cost-related medication underuse had annual household incomes of at least $40 000, and 16% had incomes of $60 000 or higher. Such patients may have chosen to cut back on medication use owing to cost pressures because they placed little value on their medications relative to other potential purchases. With greater understanding of the importance of medications for their current and future health status, such patients might be persuaded to make different budgetary choices. Toward this end, physicians play a critical role in educating patients about the purpose for each prescribed drug and the potential consequences of medication underuse.

This study suggests that patients do not necessarily find clinician responses helpful that do not address their ability to pay for their medications (eg, sympathy). Rather, patients want suggestions for how to pay for the medications that their providers believe they need. In particular, patients would appreciate information from clinicians about financial assistance programs (eg, publicly funded drug assistance programs) and lower-cost vendors (eg, AARP [American Association of Retired Persons] pharmacy services or other mail-order pharmacies). The view of many patients that changing to a less expensive or generic alternative was not always helpful requires further exploration. It is not clear whether this reflects insufficient cost savings or a perception among patients that generic medications are of lower quality. One study has shown that patients perceive greater risks associated with generic alternatives, and this may represent another important teaching point for clinicians when counseling patients about medication costs and adherence.37

Because the present study was based on patient survey data, respondents may have underestimated the extent to which providers attempted to assist them with their medication cost problems. However, as with other preventive counseling measures, patients' perceptions may in fact be the most important measure of clinicians' effectiveness. A strength of this study is that it included a significant number of respondents who were nonwhite, had limited educational attainment, and had low incomes. Nevertheless, because the survey was Internet based, it is possible that within each of these subgroups (and the sample overall), individuals who were less comfortable using technologies such as the Web could be underrepresented. Such individuals may also have lower functional health literacy—a characteristic that has been linked to poorer treatment adherence, patient-provider communication, and outcomes.38 Some respondents may have indicated that they told providers about medication cost problems because they believed this response to be more socially desirable. However, research suggests that individuals are less subject to social desirability bias when responding to a computer-based than an in-person interview.39-41 Any social desirability bias reflected in these data would suggest that the number of patients who do not discuss medication cost problems with providers is even greater than that reported here.

Among individuals solicited for participation in this study, nonrespondents were somewhat less likely to be white or to have some college education. Since these factors were related to telling a provider in advance of cost-related medication restriction, we expect that nonresponse may also have contributed to an underestimation of the number of patients who fail to tell a clinician about their medication cost problems. Moreover, each of these factors, as well as income, sex, and age, have been identified as risk factors for taking less medication than prescribed owing to cost concerns.1 Thus, the present study does not fully capture the effect of these characteristics on patients' likelihood of having cost-related adherence problems about which their clinicians are unaware.

In conclusion, two thirds of chronically ill older adults who restricted their use of prescription medication because of a cost problem did not tell a clinician in advance, and only one third ever raised the issue at all. When patients did discuss their medication cost problems with doctors and nurses, most reported that these conversations were helpful. Patients found concrete assistance in reducing prescription costs most helpful; however, many patients appreciated a simple inquiry from their clinician about whether they could afford a specific prescription. As drug costs continue to escalate and the number of adults with chronic illnesses grows, it will be increasingly important for health care providers to take an active role in discussing patients' medication cost problems and appropriate strategies for addressing them.


AUTHOR INFORMATION
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Correspondence: John D. Piette, PhD, Center for Practice Management and Outcomes Research, VA Ann Arbor Health Care System, PO Box 130170, Ann Arbor, MI 48113-0170 (jpiette{at}umich.edu).

Accepted for publication September 22, 2003.

This study was supported by grants from the Department of Veterans Affairs, Washington, DC, and the Agency for Healthcare Research and Quality, Rockville, Md.

We acknowledge Elizabeth Eby, MPH, who provided assistance with programming and table preparation, and Joanne A. Kimata, ScM, who provided editorial assistance.

The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.

From the Department of Veterans Affairs Center for Practice Management and Outcomes Research, and Department of Internal Medicine, University of Michigan, Ann Arbor (Drs Piette and Heisler); and the Department of Veterans Affairs Health Economics Resource Center, and Department of Health Research and Policy, Stanford University, Palo Alto, Calif (Dr Wagner). The authors have no relevant financial interest in this article.


REFERENCES
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 •Author information
 •References

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