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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
.. ,', ','::'.;
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
.'
to give up than bad ones
. .
..
,',',.
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.

The simple definition of adherence just given will not suf-


fice for providers or researchers who wish to rneasure de-
gree of adherence. For such purposes, an operational def-
inition is necessary; that is, the definition must specify the Keep watch also on the faults ofpatients, which make
method or methods (or operations) used to measure ad- them líe about the taking of things prescribed,
herence. Major types of operational definitions used by
providers or researchers inelude (1) self-reports, (2) collat- HJpPOCRATES (circa 400 Be)
eral reports, and (3) objective measures.
306 Part 5: Making Decisions About Patients

. 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

Chapter 22: Facilitating Adherence to Treatment Regimens 307

RESEARCH ON ADHERENCE administering medication to their children who suffer


from conditions such as streptococcal throat or otitis.
Nonadherence has been found even in patients who have
Although nonadherence has plagued physicians through- undergone renal, liver, or heart transplants. This is the case
out the ages, formal research on this issue did not appear even though many such patients are still alive only because
until the 1940s. Adherence research has focused on (1) per- a scarce organ was found in time, and even though trans-
centages of nonadherence in various patient populations; plant centers screen candidates in terms of good adherence
(2) identifying characteristics of patient, provider, and set- to pretransplant regimen. AlI patients are counseled that
ting that predict nonadherence; and (3) testing interven- posttransplant nonadherence can result in loss of graft or
tions designed to improve adherence rates. Adherence is an death. Nevertheless, researchers have found posttransplan-
interdisciplinary research area, and the nurnbers of repor ts tation nonadherence of up to 34% for adult renal patients
are burgeoning. The [ournal of Compliance in Health Ca re, and up to 43% for pediatric renal patients. Research has also
founded in 1986, is a periodical devoted to the study of shown that nonadherence is implicated in about 20% of
adherence. deaths or graft rejections in heart recipients.
Adherence and clinical outcomes. Dunbar-Iacob and
SchIenk (1996) reviewed studies which compared adhering
and nonadhering groups of patients in terms of clinical
outcome. These authors reported that there is a surprising- IMPORTANCEOFADHERENCEIN
ly srnall body of research on the role of adherence in treat-
PREVENTIVE AND TREATlvJENT
rnent effects. (Note that it was only about 20 years ago that
the FDA began requiring the monitoring of adherence in REGIMENS
drug-efficacy trials.) The reviewers concluded that the
Preventive Regimens
available data generally provided evidence of an adher-
ence-outcome relationship and suggested that efforts to In 1996, the Public Health Service (PHS) issued Healthy
enhance adherence would lead to improved outcomes. People 2000: Midcourse Review and 1995 Revistons. This re-
port documents how well the nation is progressing toward
goals in 22 Healthy People 2000 priority areas. In 1990, the
PHS promulgated these goals as being high in priority and
EXTENT OF THE POOR ADHERENCE attainable by the year 2000. (The goals represent a censen-
sus of ideas from health professionals and others in health-
PROBLEM related industries throughout the nation. More than 10,000
people provided input for selection of objectives.) The ma-
Poor adherence is almost epidemic. For exarnple, reviews of jor Healthy People 2000 goals are:
adherence research have shown that rate of patients' failure
to follow instructions for treatment ranges from 20% to Increase the span of healthy life for Americans
more than 80%, with the actual rate varying in terms of Reduce health disparities among Americans
patient population and operational definition used. One Achieve access to preventive services for all Americans
example of such a review was done in 1991 by Dunbar-Ia-
cob and her colleagues, who included al! adherence re- This midcourse review concluded: "Overall progress has
search studies that were published in the 1980s with hyper- been made on the Nation's year 20g0 targets, with 50%
tensive patient populations. For medication taking, the proceeding in the right direction, 18% moving away from
studies reported nonadherence rates ranging from 38% to the targets, and 3% showing no change from the baseline.
95%. According to these authors, the overall picture emerg- Tracking data are not yet available for 29%."
ing [rom this body of research indicates nonadherence in ap- The review stresses prevention as the foundation for
proximately two thirds of the patients who were studied. This health: "As our knowledge about health and the potential
figure for the past decade is disheartening, especially be- to prevent unnecessary disease and disability has increased,
cause it represents little or no improvement over the levels the nationál perspective on health and disease has changed
of adherence found in 1970 to 1979 research studies. dramatically. A 1994 assessment by the Centers for Disease
Research has shown that patients with chronic condi- Control and Prevention estimated that nearly 47% of pre-
tions (e. g., those with hypertension) are more vulnerable mature deaths among Americans could have been avoided by
to poor adherence than are those with short-terrn prob- changes in individual behavtors."
lems. Nevertheless, adherence is problematic even with Seven of the 10 leading causes of death in America have
acute conditions. Patients are notorious for prematurely behavioral components. Effective interventions by health
discontinuing antibiotics, even if the regimen involves only care providers to improve patients' adherence in terms of
a limited number of days. This is also the case for parents life-style improvements in such activities as alcohol and
308 Part 5: Making Decisions About Patients

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

operation. For example, research shows that physicians'


sensitivijv to such nonverbal expression of patients' feel-
irígs as tone of voice predicts adherence.
A large-scale study by DiMatteo and her colleagues
(1993) longitudinally followed more than 1,800 patients .
suffering chronic diseases (diabetes, heart disease, or hy-
pertension) and their 186 physicians. The research showed
. that physicians' own job satisfaction, their willingness to all-
swer questions, and the practice of scheduling a [ollow-up
appointment were powerful predictors of adherence.
Other research has shown that longer waiting time is
related to poorer adherence and that clinic staffs that pro-
vide warrn, personalized approaches are likely to obtain
better adherence.

Patient Characteristics

The 1993 study by DiMatteo and her colleagues followed


participants for 2 years. Baseline adherence rates predicted
adherence 2 years later. Thus, patients who tended to start
off right tended to end up right.
As discussed earlier, patients' cognitions and attitudes are
important conelates of adherence: perceptioris of personal
vulnerability, severity of disorder, self-efficacy, response ef-
ficacy, and intentions are all good predictors of adherence.
Patient coping style is also relevant. For example, recent
research with a large sample of patients with chronic con-
ditions found that patients using strategies to tune out the
problem (such as making themselves feel better by eating,
smoking, or drinking; or sleeping more than usual) were
less likely to adhere. As one might expect, patients satisfied The Bath Mary Cassatt (1891-1892). Oil on canvas, 100 x 66 cm.
with the interpersonal quality and financial aspects of their Robert A. Waller Fund. Even well-intentioned paren 15 often fail lo [oliow
treatment recommendations for their children.
ca re were more likely to adhere.

tion. However, living conditions make adherence extrernely


Social Support difficult even for the highly motivated homeJess persono
Shelters for the homeless are likely to Jack even such hum-
Family, friends, coworkers, or support groups can play an
ble amenities as calendars or clocks, so keeping rrack of
important role in encouraging the patient (through infor-
medications or arriving on time for a physician appoint-
mation, tangible aid or emotional help) to achieve health
ment may be extremely challengíng if not impossible. Med-
goals.
ications are likely to be stolen, and poor nutritional content
of much of the available food makes clietary adherence for
diabetes or hypertension problematic. Even trying to keep
Homelessness
a clean bandage on a wound represents a formidable un-
Homeless persons in America probably represen: medicine's dertaking for a homeless persono
greatest challenge. It is difficult to fathom the extent of ad-
versity which confronts most homeless persons, many of
whom suffer multiple problems such as physical disorders, Ethnicity
mental illness, and drug addiction, Even homeless persons
in good health can find the task of finding food, access to The U. S. population continues to grow and diversify. The
toilet facilities, a way to keep clean, and a place to sleep to Census Bureau projects a combined mino rity population
be an all-consuming daily struggle. of 33% by the year 2015. AlI available statistics show that
Little research has focused on adherence in this popula- there are robust ethnic differences in American health out-
Chapter 22: Facilitating Adherence to Treatment Regimens 311

Expectations help determine outcome


in any clínica] setting. Courtesy of the
National Kidney Foundation, Inc. Learn:
ing how lo shape patient expectations will
help you become "a healing sort 01person."

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.

Knowledge and Information


Use of Alternative Medicine
The physician's job ineludes adequately informing the pa-
Sorne persons may seek treatment in the standard system tient, but many physicians are overworked and pressed for
ofhealth care, while simultaneously using alternative med- time. Research shows that many patients, however eager to
ical treatments. Provided the alternative interventions are get more information, are reluctant to take Llp a physician's
not deemed to be harmful or to interfere with the modern time with questicns. Moreover, physicians often overesti-
scientific regimen, American providers can presumably mate the time they spend providing information for pa-
learn to live in peaceful co-existence with these alternative tients. (One study showed that a sample of physicians esti-
practices. (A physician who seeks to dissuade a patient mated they spent between 10 to 15 minutes informing eaeh
from practices deemed maladaptive must, of course, do so patient, but the actual average was 1 minute!) Obviously,
with tact, even compassion remembering that these prac- soliciting patient's questions and taking sufficient time to
tices may be part of the patient's cherished beliefs or cul- answer these questions are part of good practice.
312 Part 5: Making Decisions About Patients

In addition, presenting information in a clear, persuasive Skills Training


manner is important. Decades of research have yielded
principles that can be translated into practical advice on Patients may lack the necessary skills required to adhere to
how to get people to adhere. The list in Box 22.1 may be their regimen. For example, they may need to learn how to
helpful in this connection. inject a daily insulin dosage, how to select low- fat foods, or
how to become more assertive in resisting social pressure
to overeat, use drugs, smoke, or engage in unsafe sexo
BOX 22.1 Communicating information Sorne disadvantaged patients may need guidance and
Start Strong. People remember fírst and last points best; save assistance in applying for financial entitlements to pay for
your best ammunition for the beginning and end. treatment. In such cases, the provider should arrange for
Use a short, clear, direct style. Otherwise the patient will tune heIp from a social worker or social service agency.
you out. In many localities workshops addressing specific areas
Use the active voiee. "This medication will control your sei- that require training are periodicaUy available. For exam-
zures" is better than "Your seizures will be controlled by ... "
pie, a workshop may focus on teaching sexualIy active ad-
Accentuate the positive. "This drug has a 75% success rate" is
better than "This technique has a 25% failure rate." olescents how to negotiate safe sex practices, including
Substitute a vivid message for jargon. A videotape of a former what to sayand do when a partner balks at use of a condom.
patient who has recovered from a disease now diagnosed in a The provider will want to get on mailing lists to receive
current patient is worth a thousand words. announcements of such workshops to share appropriate
The source of the message should be prestigious and trustwor- information with their patients.
thy.Physicians and nurses generally have high credibility. Citing
the surgeon general wiil be more credible than citing someone
with less status. .
Tailor your strategy to what you know about the patient. People Motivation
who favor a health message need to hear only supportive argu-
ments; the provider need not rebut arguments that the patient
NaturalIy physicians must play an irnportant role in moti-
does not accept anyway.Bu! if a woman thinks she is too busy to
exercise,for example, the provider may want to indicate ways vating good adherence. Communicating diagnoses and
exercise can be incorporated into her daily routine by use of the prescribing regimens can inelude important elements that
stairs instead of the elevator. . are related to adherence (e. g., helping the pa tien t to realize
Explicitly make your point. For exarnple, advise the patient to severity of conditicn, personal vulnerability, self-efficacy,
use the stairs and to walk every time he or she can. . and response-efficacy).
End strong. Written instructions, preferably custom made to the
A physician's request can be a powerful motivator, as dem-
patient's condition, are also advisable, especiallywhen patients
need reminding of instructions they may have forgotten. onstrated by an experirnent involving mothers of children
with otitis media. Half these rnothers were asked by their
physician: "Will you promise me that you'll give al! the
doses?"; all mothers said yes to this request. These mothers
adhered significantly better than did those who were not
Upsetting Inforrnation asked to make a prornise.

A diagnosis of disease can be viewed as an opportunity for


providers to act as change agents. On the other hand, when
Fear
a negative diagnosis is first disclosed, the news may make
the patient so anxio us that he or she is unable to attend to
The role of fear in motivating health behaviors is controver-
the rest of the provider's message. In such cases, the pro-
sial. First, sorne providers shun fear tactics as coercive and,
vider should schedule a foUow-up appointment when the
consequently, unethicaI. Secorid, decades of research on rhe
patient is better able to listen, understand, and ask ques-
effectiveness of fear in motivation shows conflicting results
tions.
on whether high levels of fear may be counterproductive.
Although unresolved theoretical issues remain, there is
consensus that fear can playa part in persuading people. for
exarnple, to exercise more and eat less. However, the provid-
Reducing Complexity o] Regimen er is advised to induce a relatively low level of fear, because
high threat may invoke inappropriate behaviors such as tun-
,
<

Complexity of regimen is negatively related to adherence, so


providers should make the regimen as unobtrusive and
ing out the message or denial. Instead of focusing on long-
range consequences, stress the more irnmediate physical
j
t
simple as possible. Advice from a pharmacist can help in drawbacks (e. g., lack of energy or puffing when climbing -
.
ways to simplify medication regimens. stairs) of overeating and underexercising.
,
,:~.
,
Chapter 22: Facilitating Adherence to Treatment Regimens 313

QTHER vVAYS TO IlvlPROVE


BOX 22.2 Example of a contingency contract
ADHERENCE
Behavior Change Contract for Ms. [ane Doe

- Dates to be reviewed: Monthly for the next 12 months. 1, Iane


Behavior Programs
Doe, agree to lose 1 lb each week. 1 will achieve this goal by:
exercising at least 30 minutes on 6 out of 7 days each week
Behavior management programs are particularly use fuI in and willlimit my consurnption each day to 1,200 calories,
efforts aimed at Iifelong improvements in health-related with daily fat grams not to exceed 60. Of the 1,200 calones,
behaviors, such as attaining and maintaining weight reduc- only 150 calories may be consumed in the form of sweets or
other junk food. 1 will also attend Weight Watchers for at
tion. These programs use techniques derived from research
least 3 meetings during every 4-week periodo
on learning and habit formation. Discussion of sorne im- - Record keeping. Each day 1 will accurately monitor each of the
portant elements typically included in such programs fol- following: minutes of exercise; total calories consumed;
lows. number of fat grams; number of calories from sweets or junk
Self-monitoring. Understanding the dimensions of a be- food. I will also monitor attendance at Weight Watchers. 1
havior targeted for change can facilitate the process of will accurately record this information on the chart provid-
~d.
change. Wirh self-monitoring, the patient engages in sys-
- Meeting gaals. Each week that I meet my weight goal, my
tematic self-observation, which ineludes learning to antic- spouse will take me for a special noncaloric treat, such as a
ipate and recognize the target behavior, chart its occurrenc- rnovie.
es, and document the surrounding circumstances. Thus, an If at the end 00 months, 1have lost atleast l2lb, the cosign-
obese person can learn to identify the timing and pattern- er of this contract will furnish me with $50 from lile $100
ing of urges to eat, including internal sensations, social deposit that 1 make in signing this agreement, with the mon-
ey to be spent on a facial and hair-style. If at the end of 6
stimuli (e. g., stress resulting from arguing with a spouse),
months, I have kept off at least 12 lb, the balance of my de-
and the circumstances in which eating is likely to occur. posit will be made to me for another visit to the hair dresser.·
Self-monitoring is a useful first step in starting any - Failing to meet goals. If 1faíl to lose the stipulated weight for
change, because a more complete self-understanding better any 2 weeks, 1 will not Jet rnyself watch my favorite sitcorn,
prepares the patient to recognize exactly what behaviors "The Ierry Seirifeld Show," for the next 2 weeks, At the end of
need to be modified. 6 months, in fail to keepoff at least 12 lb, the bala~~e of any
remaining deposit wiIl be donated to the National Rifle As-
Stimulus control. Stimulus control involves such prac-
sociation, an organization whose goals I despise.
tices as altering the patient's environrnent to make behavior
change as convenient and comfortable as possible and add- . [ane Doe
ing reminders to promote behavioral change.
For exarnple, a person is more likely to use an exercise Provider's name
machine when it is set up in the family room near the tele-
Date
vision set than when it is sto red in a doset. Also, it is easier
to abstain from fattening foods if such foods are removed
and never again brought into the home.
Reminders are also helpful. The Stanford Heart Disease
Prevention Program developed tip sheets to summarize
risk reduction strategies, briefly and elearly, on color fui Utility of Behavior Management Techniques
pie ces of paper. Tip sheets on the refrigerator might en-
The reader may wish to consult M otivating H ealth Behavior
courage consumption of low-fat foods.
for a more detailed diseussion of how behavioral teeh-
Contingency contracto A contingency contract is a writ-
niques can further health eare goals. Brownell and Kramer
ten agreement in which the patient agrees to specific be-
(1989) give a detailed explanation of how to apply the tech-
havior changes and outeomes by stipulated deadlines; re-
niques to the treatment of obesity.
wards or penalties for eompletion or noneompletion of the
agreement are also speeified. The rewards and penalties in
the contraet pro vide ineentives for the patient to aeeom-
plish speeifie goals by given dates. Relaxation Training
An example of a eontingeney contraet is given in Box
22.2. The eontraet should be customized to meet the spe- Relaxation training is a prornising, widely used nonphar-
cific, unique needs of the patient and in elude a time frarne, maeologieal intervention found to be useful with ehronic
spell out specifie goals, as well as sehedules of rewards or illnesses. For exarnple, it has helped in the alleviation of
penalties, specify methods of reeord keeping, and make anxiety and nausea from chemotherapy, thus making it
provisión for renegotiation. easier for patients to eontinue with their regimen.
314 Pan 5: Makíng Decisions About Patients

Support Groups be less powerful than the immediate reward of delicious


food.
¡

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

- Be a patient-friendly resource: Take sufficient time, show a


Modeling caring attitude, be understanding.
- Make the treatment as user friendly (e. g., simple, brief) as
possible.
Patients can learn by observing another person enact a be-
- An ounce of preventíng.nonadherence is worth a pound of
havior. A patient recovering from a mastectomy can learn trying to cure it. Ensure that the patient is ready, willing, and
appropriate exercises from someone fully recovered from able to adhere from the beginning.
the operation. (This is an example of self-efficacy derived - Do not overload the patient with information; it may be bet-
from vicarious experience.) Self-help programs such as Al- ter to share information across two visits, Do not try to in-
coholics Anonymous and weight-Ioss support groups in- form unless the patient is calm and can attend to the mes-
sage. Have patients surnmarize their understanding of their
corporate the principIes of modeling.
condition and treatment at the end of the visit
- Do not be naive. Alrnost all patients slip at least occasionally,
and so will yours. Even a simple question such as "Are you
having any trouble taking your medications as prescribed!"
can uncover adherence problems. Express sympathy ("It
RELAPSE PREVENTION must be hard to keep track of your medications") rather than
anger at any disclosure of nonadherence.
- Increase patient involvernent in treatrnent, For exarnple,
Because recidivisrn is both dangerous and common, re- make sure the patient understands why a folJow-up visit is
lapse prevention (RP) is becoming an increasingly irnpor- needed: you may want to negotiate with the patient about
tant aspect of health careo Re/apse is especia/ly problematic the appropriate interval between foUow-ups. At the very
with SllCJ¡ addictive disorders as overeating and smoking, [ot least, have patients monitor and record their adherence be-
which re/apse rates range [ro m 50% to 90%. haviors, and go oyer this material with the patient.
- Use foUow-up appointments, telephone/postcard reminders,
A lapse is likely to happen to anyone. However, the re-
calendars, and other written material to improve adherence.
sults of even one failure may lead to negative feelings and - Be a gold mine of information for the patient. A Rolodex of
statements about the self, a decreased sense of self-efficacy, community resources for patient referral (e. g., social service
and perhaps even abandonment of further attempts to ad- agencies) is a must.
here. - Be sure the patient has the support of significant others; join-
Relapse has been linked with such factors as aversive ing a relevant support group may help the patient.
emotional sta tes (e. g., depression, stress), lack of social - Contract with patients to achieve goals by reasonable dead-
lines, especiaUy when treatrnents are lengthy.
support, waning of motivation, and being exposed to
- Be creatíve in applying one or more of the interventions dis-
temptation (e. g., a friend asks a recovering alcoholic in for cussed in this chapter, as needed by the patient.
a drink). Also, lifelong behavior change often involves wait- - Realize that facilitating adherence and preventing nonadher-r-
ing a long time for rewards. For an obese person, long- ence are part of your job description. .
range reward (e. g., a healthier, more attractive body) can
Chapter 22: Facilitating Adherence ro Treatrnent Regimens 315

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

. model; it contains chapters on application of the model with ad-


dictive lifestyles (alcoholism, smoking, overeating).
I
Smith, M., & Lin, K. (1996). A biological, environmental and cultural
basis for ethnic differences in treatment. In P. Kato & T. Mann
(Eds.), Handbook of diversity issues in health psychology (pp. 389-
406). New York, NY: Plenum Press.
This chapter reviews the available evidence on ethnic differences
in reactions to drugs.
Taylor, S., & Aspi.nwall, L. (1990). Psychosocial aspects of chronic
illness. In P.Costa, Ir. & G. VandenBos (Eds.), Psychological aspects
o[ serious illness. Washington, DC: American Psychological Asso-
ciation.
This is a briefbut comprehensive review of psvchosocial variables
(e. g., health attitudes and behaviors) as well as cognitive and
behavioral interventions, as related to chronically iUpeople.
U. S. Department of Health and Human Services, Public Health Ser-
vice. (1996). Healthy people 2000 midcourse ret'iew and 1995 revi-
sions. Sudbury, MA: Iones & Bartlett Publishers,
This review summarizes what has been achieved during the first
5 years of the decade-Iong campaign involving health care goals
to be attained by the end of the century.

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