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Facilitating Adherence to
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Treatment Regimens
Shirley P. Darnrosch
Self-Reports
Habit is habit, not to be flung out of the window but
rather coaxed downstairs, one step at a time.' Self-reports by patients are probably the most widely used
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operationalization of adherence. However, the drawbacks
of this approach are well documented. For example, the '
patient may give a "socially acceptable" but false version of
The unfortunate thing about the world is that good
adherence to avoid self-embarrassment or upsetting the
habits . are much . easier
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to give up than bad ones
. .
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provider. The tendency to respond in a socially desirable
SOMER5ET MAUGHA.Yi way is a basic weakness of self-reports; the tendency is es-
pecially problematic with sensitive .topics (e. g., extent of
alcohol or illicit drug consumption). Moreover, even con-
Problems of poor adherence permeate all elinical aspects scientious patients can make honest mistakes in recollec-
of health careo Adherence is problematic for both preven-
tion,
tive regimens and the self-management of treatment regi- A good provider or researcher realizes that self-reports
mens for patients with acute and chronic disease. are more likely to be honest if patients are queried under
Adherence can be defined as the extent to which patients conditions where mutual trust, nonjudgmental under-
follow their provider's health care recommendations. The standing, and absence of stress prevail. In any event, phy-
older ter m compliance is frequently used, essentially as a sicians should validate self-reports whenever this is feasi-
synonym for adherence. Currently, however, many a 11 thors ble.
prefer to use adherence, beca use this word is viewed as con-
noting a more mutual invo/vement between patient and pro-
vider. Compliance, on the other hand, is seen as implying a Collateral Reparts
relationship between authoritattve provider and a relative/y
passive patient. Collateral reports of adherence inelude feedback from the
patient's various health care providers, friends, or family
members. For example, the pharmacist may report faiJure
to renew a prescription. Accuracy of such feedback of
OPERATIONALLY DEFINING course depends on the reporter's familiarity with the pa-
ADHERENCE tient and willingness to act as a whistle blower if adherence
IS poor.
. If the physician observes no improvement despite ap- ]UST WHAT THE PATIENT ORDERED
propriate medication, this may indica te nonadherence. It
is important for physicians to realize that they may some-
times be the last to know about poor adherence. Research In 1997, the Food and Drug Administration (FDA) relaxed
has consistently shown that physicians tend to overestimate its rules to make it easier for pharmaceutical companies to
tneir OlVl1 patients' degree of adlzerence; physicians also tend advertise their prescription products directly to patients vía
to be poor at distinguishing their adhering from their nonad- television; magazines and other popular media are also
hering patients. outlets for these paid messages. The companies budgeted
almost $600 million for direct-to-patient ads in 1996; these
expenditures are projected to grow dramatically in the
rwenty-first century.
Objective Measures Such advertising is ubiquitous. For example, several re-
cent issues of People, a gossip magazine with a circulation
Objective measures of adherence inelude such factors as of over 3 mil!ion, carried two pages of side-by-side adver-
pill counts (i. e., amount of medicine left in the bottle), tising for Prozac. The left-hand page proelaimed "Depres
records of appointment keeping, physical testing to assay sion hurts" against a black background featuring a cloud
presence of prescribed drug or absence of forbidden drug, and raindrops. In contrast, the right-hand page superim-
and rneasures of cholesterol to check on diet adherence. posed the message "Prozac helps" on a bright blue back-
Ingenious devices are continually being added to the list of ground with a blazing yellow sun. The drug companies
objective ways to measure adherence. For example, a spe- are banking on advertising like this to cultivate brand
cial medication bottle cap fitted with an electronic monitor awareness, so patients will ask doctors for a prescription
is available to record date and time on a microprocessor by narne, presumably influencing their physicians to com-
chip each time the bottle is opened. ply.
Objective measures also have a number of limitations. There is a long history of doctors succumbing to patient
First, they may be costly and cumbersome. Second, they pressure or expectations in the case of antibiotics. In a typical
may in sorne cases foster an adversarial climate between the year, doctors prescribe sorne 12 mil!ion antibiotic prescrip-
patient and provider. For exarnple, sensitive patients may tions for treatment of colds, bronchitis, and other respira-
feel the provider regards their reports as untrustworthy; tory infections. Doctors may yield to requests for antibiot-
sorne patients may even feel challenged to deceive the eval- ics in such cases, even though these viral conditions almost
uator by, for example, emptying the pill container, knowing always fail to respond to this medication. This minor mal-
a pill count wil! be made. practice is worse than a waste of money: indiscriminate use
of antibiotics has contributed to the emergence of drug-re-
sistant strains, a growing problem in the U. S. and the rest
of the world.
Selj-Report vs. Objective Means Critics of direct-ro-patient advertising for prescription
drugs poin t to the 1997 [en-phen debacle as a wotst-case sce-
Research has consistently shown that adherence reparts are nario stemming from Madison Avenue tactics. Fen-phen (a
/ess accurate when measured by seit-reports rather than ob- combined appetite depressant/amphetamine diet drug)
jective means. For exarnple, researchers recently compared was approved by the FDA, and patients began calling their
adherence in 350 patients with rheumatoid arthritis by self- doctors to demand (and get) the drug. The craze ended
reports and by using electronically monitored bottle caps suddenly when the manufacturer withdrew fen-phen from
for each patient. The research team was careful to encour- the market at the request of the FDA, responding to reports
age candid reporting by patients, stressing the confidenti- of grave heart abnormalities in many users of the drug.
ality of the self-reports and promoting a cooperative staff- Supporters of directly advertising rnedications to pa-
patient relationship. Nevertheless, among the 350 patients, tients defend the practice as empowering clients with in-
only 7% met the criteria for poor adherence in terms of formation. Opponents attack these paid messages as (al
self-reports, whereas 53% did so by use of the electronic misleading (e. g., failing to list al! side effects, exaggerating
monitor. benefits); (b) entangling laypersons in information they
Self-reports may be especially vulnerable when rneasur- may be unable to understand in context (since many of rhe
ing alcohol and illicit drug usage. A drama tic exarnple was ads merely reprint the sarne information prepared for doc-
recently provided by samples of homeless men residing in tors); (e) creating demand where often there is no real
large New York City shelters. In self-reports, admitted cur- need; (d) intruding into examining-roorn decisions; and
rent drug or alcohol usage was less than 20%; however, (e) wasting doctors' and patients' time. (Sorne companies,
urinalysis was positive for drugs or alcohol in 80% of these to minimize practitioners' irritation, warn doctors before
meno direct-patient ads appear in their community.)
. 'o' t
illicit drug consumption, diet, exercise, smoking, unsafe ous or uncomfortable tests and other diagnostic proce-
sexual practices, and seat-belt usage could bring us closer dures, and of purchasing drugs and devices on the ad-
to the goals of Healthy People 2000. vice of the physician, then fail to follow the recommen-
Adherence to life-style changes such as improved nutri- dations?
tion, regular exercise, maintaining optimal weight, and ces- .
Researchers on adherence seek answers to this riddle in
sation of smoking presents enormous challenges to both
hopes of providing at least partial solutions to the noriad-
provider and patient. Research indica tes that adheience to
herence problem.
lifelong preventive behaviors may be even more difficult than
The major explanatory models used in adherence re-
adherence to treatment regimens.
search focus on patient beliefs and expectancies. The im-
Treatment Regimens. Findings on the widespread na-
portant conceptualizations inelude the health belief model
ture of poor adherence to medication regimens have al-
(HBM), self-efficacy theory, and the theory of reasoned
ready been summarized in this chapter. Such nonadher-
action. Despite the existence of these various models, there
ence can have dire consequences in terms of patient mor-
is theoretical convergence on the importance of five factors.
bidity and mortality, as well as adding to the cost of health
That is, research shows that patients are most likely to ad-
services.
here when (1) they perceive the severity of the disorder is
The most common therapeutic intervention in medi-
high (serious consequences), (2) they believe the probability
cine is the writing of a prescription. Retail prescription
of their getting the disorder is also high (personal suscepti-
drug sales in the United States approached $150 billion in
bility), (3) they have confidence in their ability to perform
2000 and will contínue to increase each year as our popu-
behavior or behaviors prescribed to reduce the threat (self-
lation ages. Thus, poor medication adherence wastes liter-
efficacy), (4) they are also confiden t the prescribed regimen
a1ly billions at a time when growing costs are heightening
will overcome the threat (response-efficacy), (5) and they
pressures to contain national health care expenditures.
have the intention to perform the behavior or behaviors
In addition to endangering the patient, nonadherence
(behavioral intention). Thus, these elements can be sum-
has the potential to lead to physical harm to others in the
marized as the "double high/double efficacy/behavioral
community. For example, someone with epilepsy who fails
intention" model.
to take necessary medication and experiences a seizure
whíle driving may jeopardize the lives of not only himself
or herselfbut of fellow passengers or travelers in other cars.
An even greater threat to the community is posed by per- Utility of the Health Belief Model and 5elf-Efficacy
sons with active tuberculosis (TB) who fail to complete their Framework
medication regimen, which can last 6 or more months. Such
failure may a1low the bacteria to mutate into deadly, drug- The Health Belief Model (HBM) is perhaps the most in-
resistant strains. Nonadherent patients with TB are a threat fluential and intensively researched theory of what moti-
not only to themselves and their families, but also to health vates patients to adhere or not adhere to a wide spectrum .'1
care providers and other members of the cornmuniry. of regimens, ineluding breast self-examination, control of
There has been an alarming recent rise in deaths from hypertension, managing diabetes, use of well-infant clinics,
this airborne disease, such that Denver, for example, has and prevention of coronary heart disease. Research over 20
instituted "directly observed treatment," whereby patients years has documented that the HBM can predict whether
must be observed while they swallow their medication. patients adopt certain health behaviors, For example, it has
Even more drastic measures may be taken. In 1993, New be en a common finding that patients who are poor in ad-
York City adopted strict regulations that could require con- herence tend to see themselves as less threatened by and
finement of patients with active TB who faíl to complete less susceptible to illness that is diagnosed by a provider.
treatment on their own; such detention could be required Albert Bandura's (1986) research has identified pattent's
for 1 or more years. perceived self-efficacy as an importan; mediator of adherence-
Bandura defines perceived self-efficacy as "a judgment of
one's capability to accomplish a certain level of perfor-
mance." The patient's self-judgment, whether it is veridical
WHY 15 POOR ADHERENCE SO COMMON?
or faulty, is said to be based on four major informational
sources: (1) performance attainment (the most influential
George C. Stone, a researcher at the University of Califor-
source of self-efficacy information), which is based on the
nia-San Francisco, has asked a question that expresses the
patient's own authentic mastery experiences; (2) vicarious
puzzlement (and perhaps exasperation) experienced by
experience, which involves having the patient see or visual-
many providers and researchers:
ize similar others perform successfully; (3) verbal persua-
Why would someone who has gone to the trouble and sion, which stems from having the provider or other people
expense of seeking out a physician, of undertaking ardu- try to persuade the patient to adjust his or her self-efficacy
Chapter 22: Facilitating Adherence to Treatrnenr Regimens 309
judgments; and (4) physiological states, which concern in-
ternal cues such as somatic arousal in taxing or stressful
situations that the patient uses as evidence of physical ca-
pability or deficit.
Bandura's conceptualization has, for example, provided
insights that were use fuI in treating patien ts recovering
from myocardial infarction (MI). Because many MI pa-
tients remain fearful of exertion long after they have recov-
ered, the professional faces the chal!enge of restoring the
patients' confidence in their cardiac efficacy.
Bandura recommends using evidence from al! four
sources of information in programs designed to restore the
patient's sense of physical self-efficacy. Performance effica-
cy information can be cogently conveyed by treadrnill ex-
ercises; vicarious efficacy information can be obtained
from visits with former patients who now successfully lead
active lives; persuasive efficacy information results from in-
forming the patient about his or her physical capabilities;
and finally, the patient can be taught how to interpret phys-
ical efficacy information correctly so as not to misread nor-
mal signs of exertion as signs of another heart attack. Ban-
dura cites evidence that the patient's perceived physical cCl-
pabi/ity predicts tesumption of an active life better than does
cardiovascular capacity as measured by the treadmill.
Research has shown the self-efficacy framework to be
helpful in such health-related activities as improving respi-
ratory volumes and capacities in patients with lung disease,
Age and eyesight may be two factors affecting adherence Courtesy of
controlling tension headaches, and breaking the smoking
the National Insritute on Aging.
habit. Bandura advises the provider to conduct self-efficacy
probes throughout the course of treatment to facilita te ad-
herence. there is evidence that such adherence would yield enor-
mous rewards, such as slowing or even preventing the onset
of blindness, kidney failure, heart attack, or amputation in
diabetic patients. The latest research on diabetes manage-
FACTORS ASSOCIATED WITH ment yields strong evidence that a strict innovative regi-
ADHERENCE men (including use of home monitoring ofblood sugar up
to 10 times daily and multiple insulin shots each day) could
Literally hundreds of variables have been studied as poten- greatly reduce (or eliminate) dire complications of diabe-
tially relevant to adherence. An overview of sorne major tes. After publication of these findings in the media, diabe-
variables follows. tes centers across the nation geared up for an avalanche of
patients seeking the new treatrnent. However, experts were
disappointed at the low level of requests for the innovation;
Characteristics of Disorder and Regimen these experts speculated that the innovative daily regimen
as a lifelong practice is daunting to many persons with di-
Research has genera/ly [ound that: (a) Adherence is /ikely to abetes. One exception lies with diabetic women contem-
deteriora te over time, (b) adherence is more problematic for plating pregnancy; these women are generally highly rno-
asymptomatic conditions, especially if treatment entails aver- tivated to maintain even an extremely tight control during
sive side effects, and (c) complexity (e. g., number of and the 9 moriths of pregnancy if it improves their chances for
scheduling of medications, special tnstructlons) of the regi- ahealthy infant.
men is negatively related to good adherence.
Consider, for example, the triple whammy delivered to
a hypertensive patient put on a lifelong medication regí- Physician and Setting
men, yet who experiences no overt symptoms except for
reduced or absent sexuality as a side effect of medicine. It is no surprise that a physician's ability to empathize and
Cornplexity of regimen can lower adherence even when communicate with patients is essential for good patient co-
310 Part 5: Making Decisions About Patients
Patient Characteristics
comes. Health researchers are aware of these differences, tural heritage.) Detailed information on alternative medi-
but are uncertain as to why they exist. cine is provided in Chapter 5.
Sorne experts cite structural factors (such as differential
access to health care) to explain these ethnic differences.
Other possible explanations cited inelude cultural, biologi-
cal, genetic, social class, or religious differences. In any event, INTERVENTIONS TO IMPROVE
Pamela Kato at the Stanford University School of Medicine ADHERENCE
has reviewed the data on the ethnic-health relationship and
coneluded that "general health interventions can be more While a doctor's recommendation is an important predictor
effective if they are targeted toward ethnic groups." of successful behavior change, the adherence literature co-
Practitioners may want to consuIt Smith and Lin's 1996 gently demonstrates that physicians or other providers can-
review on how biological, environmental, and cultural fac- not merely assume their job is done after diagnosis and pre-
tors can produce ethnic differences in responses to rnedi- scription of correet treatment. Good practitioners do not
cations. The latest research has found significant variations automaticaUy conelude that the rest is up to the patient. If a
in how ethnic groups respond to several elasses of medica- patient is nonadherent, it may be that.he or she does not (1)
tions, ineluding psychotropies, analgesics, and cardiovas- know what to do (knowledge deficit), (2) know how to do
cular agents. In summary, ethnic variation in drug response it (skills deficit), or (3) want to do it (motivation deficit).
is an issue of growing importance as the U. S. population The physician plays an important rolein all three areas.
becomes increasingly heterogeneous.
Personally experiencing an illness often provides a patierit Marlatt and Gordon (1985) have proposed an RP ap-
with the unique perspective of an "insider" who possesses proach that emphasizes teaching skills and changing atti-
special knowledge and insight that cannot be obtained in . tudes to enable the patient to cope with the inevitable lapse.
any other way. These insiders often form self-help groups An additional strategy teaches patients how to identify their
to accommodate persons who share a common problem. own "high risk for lapse" situations to make appropriate
Sorne 7 mil/ion persons attend various self-help groups, life-style changes to elimina te or reduce such risks. For ex-
amollg which Alcoholics Anonymous is probably the oldest ample, a young man with such training is able to recognize
and most successjut. Self-help groups can assist in a wide that he is more likely to engage in unsafe sex after drinkíng.
variety of circumstances, including coping with cancer, He is now in a position to limit (or eliminate) alcohol in-
rearing children with Down syndrome, and dealing with take whenever a sex partner is Iikely to be available.
meno pause. Marlatt and Gordon stress that RP skills must be taught
Persons sharing the same challenge regularly meet to as par t of the treatment regimen right from the beginning.
assist each other; a counselor may or may not be present. If initial commitment to the change is low, RP training
The empathy, understanding, and social support in these must start with strategies to increase motivation so that the
groups can help mernbers adhere to their regimens. A re- patient is truly committed. (Whether persons who fail to
cent review concluded that these groups are well on their achieve initial commitment should be screened from be-
way to becoming a legitimate source of aid that will chal- havior change programs is controversial.)
lenge professional counselors as providers of help.
BOX 22.3 Guidelines to adherence-friendly practice
More recent research has shown that a multifaceted book's autho r, concluded that Lia's life was ruined not so
maintenance program, including posttreatment contact much by nonadherence as by a cultural misunderstanding.
with the therapist designed to solve the patient's specific Fadiman views the animist beliefs of the Hmongs not so
problerns, has improved long-term results for the mainte- much as ignorance as another kind of knowledge.
nance of weight loss. It is noted that adherence is usually lower when a com-
plicated, long-term regimen is involved, as is the case here.
Compounding the difficulty of achieving adherence is the
parents' disbelief in the rnedicine's effectiveness and their
SUMMARY perceived lack of self-efficacy in adhering to the medical
regrmen.
Nonadherence, which is often unrecognized by the physi-
cian, is both common and potentially dangerous. Physi-
cians must play an active role in facilitating adherence in
their patients. Such facilitation first requires that the phy- SUGGESTED READINGS
sician be aware of the adherence problems in his or her
patients. See Box 22.3 for a list of sorne practices that Bandura, A. (1986). Socia/ [oundations for though: and action. Engle-
should be routinely used by physicians to ensure high ad- wood, NJ: Prentice-Hall.
herence efficacy in their patients. Good practice requires Chapter 9 on self-efficacy presents information useful to the prac-
that responsibility foroadherence must be shared between titioner,
provider and patient. Brownell, K., & Krarner, F.(1989).Behavioral management of obesiry,
Medical Clinics ofNorth America, 73,185-201.
An excellent review of how behavior management can help obese
people; it details elernents of the treatment as well as of interven-
tíons to prevent relapse.
CASESTUDY DiMatteo, M.R.. et al. (1993). Physicians' characteristics infIuence pa-
tients' adherence to medical treatment: Results from the medical
Anne Fadiman (1997) has written about a real-life tragedy -outcomes study. Healtn Psychology, 12,93-102.
stemming from the c1ash of two cultures: Western medicine The article idcntifies physician variables that correlate with pa-
vs. the animist culture of the Lee farnily, Hmong refugees tient adherence,
who fled from the mountains of Laos and settled in central Dunbar-Iacob, J.. Dwyer, K., & Dunning, E. (1991). Compliance with
California. antihypertensive regimen: A review of the research in the 1980s.
Annals of Behovioral Medicine, 13, 31-39.
Lía, baby daughter of the Lees, is severely epileptic. The
This review of 1980-89 studies details the patient variables related
desperately sick baby was taken to the hospital, but the Lees to adherence in patients with hypertension and the extent of non-
balked at the complicated regimen of drugs prescribed to adherence.
stop the devastating attacks. The Lees believed that the sei- Dunbar-Iaccb, J.. & Schlenk, E. (1996). Treatrnent adherence and
zures were causedby fugitive spirits (called dabs) who had clinical outcome: Can we make a difference? In R. Resnick and R.
caught Lia's soul and made her fal! down. They preferred . Rozensky (Eds.), Health psychology through the life span (pp. 323-
to treat her by means of animal sacrifices, which they be- 343). Washington, OC: American Psychological Association.
lieved would persuade the spirits to give Lia her soul back. This reviews the research on the adherence-health relationship.
Then the seizures worsened, and Lia suffered irreversible Elder, J., Geller, E., Hovell, M., & Mayer, J. (1994). Motivating' healtl:
behavior.1\TY: Delrnar Publishers.
brain damage. The California doctors blamed the parents
Chapters 8,9, and 12 are most relevant t:o~practitioners interested
for failing to adhere to the medical regimen. The Lees
in behavior management techniques deii'gned to train, motiva te,
blamed the doctors, attributing Lia's worsened condition and change health-related behaviors. :J:.
to overmedication. Fadirnan, A. (1997). The spirit catches you and yOIl faU dO\VlI: AH mong
The common ground shared by the two sides was a corn- child, her American doctors and the collision of t\Vo ClIlt 11res. New
mitment to do their utmost to make Lía a healthier baby. York, NY: Farrar, Strauss, & Giroux.
The baby was admitted to the hospital 17 times (despite the The title sumrnarizes the elernents in a tragic misunderstanding
Lees' total inability to pay), so the parents must, at least that ruined a child's life.
initially, have had sorne shred of faith in Western medicine. Kato, P. (1996). On nothing and everything: The relationship between
ethnicity and health. In P. Kato & T. Mann (Eds.), Handbook of
But their Hmong worldview prevented them from recog-
di~mity iS511e5in health psychology (pp. 287-300). New York, NY:
nizing the good faith and expertise of the doctors, nurses,
Plenum Press.
social workers, and foster parents who became involved in .An overview of what is known about the irnportance of ethniciry
Lia's careo in health careo
The Western professionals blamed the parents' supersti- Marlatt, G., & Gordon, J. (1985). Relapse preventton. New York; NY:
tious worldview and self-defeating ignoran ce for Lia's The Guilford Press.
heartbreaking outcome. On the other hand, Fadiman, the This text presents an overview of Marlatt's relapse prevention
316 Part 5: Making Decisions About Patients