J R Soc Med 2002;95:68-71
doi:10.1258/jrsm.95.2.68
© 2002 Royal Society of Medicine
Adolescent treatment compliance in asthma
R Dinwiddie FRCP FRCPCH
W G Müller MRCP MRCPCH
Respiratory Unit, Great Ormond Street Hospital for Children, London WC1N
3JH, UK
Correspondence to: Dr R Dinwiddie
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INTRODUCTION
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The term compliance is defined in the dictionary as ‘to
consent’
or ‘to do as asked’. With adolescent behaviour
these
two definitions are not the same thing: many adolescents will
consent to
treatment in the clinic but do not do as asked when
they return to normal
day-to-day life. The term adherence in
relation to treatment is also widely
used and is defined as
‘wilful intention’. Non-adherence would
therefore
be the wilful intention not to do something. Ordinarily, the
word
compliance refers to taking the correct dose of prescribed
medication at the
correct intervals. In real life doses are
often omitted and the intervals
between doses are commonly longer
than they should be; a rarer form of
non-compliance is over-consumption
of medication. Yet compliance affects many
other aspects of
the management of chronic conditions, such as avoidance of
aggravating
factors, monitoring, appointment-keeping, prevention or applying
an
emergency plan of action when needed.
The term concordance has also been introduced to reflect an alliance of
equals, professional and patient, rather than one-sided
obedience1. The
direct involvement of patients in decision-making is now central to policy in
the National Health Service. However, the concordance concept is not discussed
further in the current review because of the scarcity of evidence-based data
on its application to asthma treatment. Here we review the complex issues of
compliance with asthma treatment in adolescence and how they can be assessed,
understood and addressed.
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REASONS FOR NON-COMPLIANCE
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Non-compliance can be either unintentional or intentional. The
reason for
unintentional non-compliance may be inadequate instructions
or a regimen that
is too complex or time-consuming. Inadequate
training in inhalation technique
often causes non-compliance
despite the best intentions. Lack of understanding
about the
need for longterm preventive treatment is another important
cause of
non-compliance, especially when preventive medication
does not produce
immediate symptom relief. The commonest reason
for inconsistent use of inhaled
corticosteroids in one large
North American study, including 394 adults, was
the belief that
these agents were not needed during symptom-free
periods
2. Parental
or
patient anxiety regarding side-effects, dependence and overdosage
also
contributes substantially to
non-compliance
3,4,
especially
in relation to inhaled corticosteroids. Another difficulty for
teenagers
is the awkwardness of taking medication via a large volume spacer
when
at school or out with friends; treatment must take account of
the
changing circumstances of children and adolescents. Denial
of being asthmatic,
or of the severity of the illness, is a
common reason for non-compliance in
this age group. Additional
factors such as inconvenience of treatment,
forgetfulness, laziness,
or
carelessness
5 are
not unique to adolescent behaviour, and
any criticism should be expressed in a
way that does not worsen
the relationship between professional and patient.
Children
do become less compliant as they approach adolescence. In a
study of
163 children aged 7-16 years Jonasson
et al. found
that those aged
less than 9 had significantly better drug adherence
than those aged
10-16
6. Other risk
factors for non-compliance
are large family size and history of recreational
drug intake
7.
True intentional non-compliance is more complex in its origins and more
difficult to recognize and change in the individual. Although many adolescents
and young adults with chronic disease, including asthma, neglect their health,
very few are harming themselves deliberately. The longterm management of
intentional non-compliers presents special ethical dilemmas. Adolescent
factors that militate against compliance with treatment include struggles with
authority, cultural pressures to be normal and a chaotic home
environment8.
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CONSEQUENCES
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Troublesome consequences of non-compliance include uncontrolled
symptoms
day and night, limitation of lifestyle and the need
for emergency attendances
at the general practitioner's surgery
or hospital. The other side of
non-compliance, overuse (estimated
to occur in 2-7% of
patients
6,9,
means an excess of side-effects.
The economic implications of non-compliance
have increased with
the advent of expensive new treatment regimens. In England
in
1999 £587 million was spent in the community on drugs
listed under
the Respiratory System section of the
British National
Formulary10.
If
compliance is about 50% the direct waste of resources is substantial.
Moreover,
the economic impact of non-compliance will include less easily
measured
costs such as those of missed appointments, emergency visits
to
hospitals and days off school or work.
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ASSESSMENT
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The exact scale of non-compliance is hard to assess and for
asthma
medication the estimates range from 10% to 55%. What
is the best way to assess
compliance? As one might expect, diary
cards tend to
exaggerate
6,13.
History taking and examination
provide the first clues. An open ‘be
honest’ type
of questioning should be adopted with child and parents:
how
much of the medication is really being taken day to day? The
answer can
help with compliance since, if it is much lower than
expected and the disease
is well controlled, the prescription
can be cut. Put
et
al.
14 found a
higher incidence of self-reported
non-compliance with asthma treatment in
patients who were currently
in hospital or recently discharged from hospital
than in patients
of similar severity who contrived to avoid hospital
admission.
One way to identify the non-complier is to ask the primary care
physician
how often the patient attends for a repeat prescription. Sherman
et al.15
also found that the patient's pharmacy provided accurate
information in 92% of
cases.
At the clinic visit, weighing a metered dose inhaler, checking the date of
issue or counting remaining tablets could enable the physician to gain insight
into treatment adherence. However, in studies where tablets were counted or
medication was weighed the results were only 50% accurate in reflecting
compliance16. A
recent study of oral asthma medication in 57 patients obtained sufficient data
from 47. Compliance was 92% as estimated from the tablet count but only 71%
from recordings of electronic TracCaps, which recorded the dates and times
patients removed and replaced their medication bottle
caps17.
Treatment can also be monitored directly by measurement of drugs in the
blood, but in practical terms this applies only to theophylline and
cyclosporin, which are seldom used in current practice. Moreover, low blood
levels must be interpreted with
caution18. Sputum
eosinophil count has been investigated in a small number of patients as a
marker for non-compliance but more work is needed to show whether it provides
a reliable and practical
method19.
Electronic devices have been used for both metered dose inhalers and oral
medication. Devices that record the time and frequency of use are available
for research purposes, and the ethics of ‘bugged inhalers’ have
been discussed by
Levine20. In his
view, this kind of covert monitoring is ethically justifiable if the risk to
the patient is negligible and the research would be invalid if the patient was
informed he or she was being monitored in this way. In non-compliers, further
therapeutic support could be offered on completion of the study.
Investigations of non-compliance in chronic disease have been reported by
Sackett et
al.21 and
Cochrane22. These
indicate that about one-third of patients are compliant with treatment,
one-third partly compliant and one-third non-compliant.
Coutts et
al.9 studied 14
asthmatic children aged 9-14 years with a Chronolog electronic
timer9. These
children were aware they were being monitored; nevertheless, underuse of
medication was found in 55% of study days, mainly due to omission of a dosage
time rather than not taking enough puffs of medication. With a twice-daily
regimen compliance was 71% whereas with a four-times-daily regimen it was only
18%. One patient activated the inhaler 77 times in the 30 minutes before
arriving in clinic.
A covert electronic monitoring study was conducted by Redline et
al.23 in
Chicago. 65 children aged 5-9 years were included, of whom 40% were below the
poverty level for that city. The patients were asked to undertake electronic
peak flow measurements twice daily for three weeks and enter the results on a
diary card. At three weeks diary cards indicated missing reports in 15% but
the true figure was 52%.
Chowienczyk et
al.24 likewise
found that patients who were asked to keep a record of their peak expiratory
flow frequently invented the results. Electronic devices that alert patients
to the exact time of recording may improve data-keeping.
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WHAT DO PATIENTS WANT?
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Improvement of compliance demands an understanding of the patient's
likes
and dislikes. Patients understandably do not favour a
medication regimen that
requires regular blood
testing
25.
Regarding
the route of administration,
some
26 but not
all
25 studies
indicate
a preference for oral over inhaled medication. The question
of route
assumes greater importance when one remembers that
many patients take their
inhaled drugs incorrectly. Infrequent
administration is also preferred to
frequent
9. As
regards choice
of device for inhaled medications in adolescents, no broad
conclusions
can be
drawn
27,28,29.
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DEALING WITH NON-COMPLIANCE
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A Cochrane Review of interventions to improve non-compliance
and outcome
concluded that most methods are complex and few
are
effective
30. The
care of children with chronic illness demands
a combined effort from
paediatricians, general practitioners,
nurse specialists, psychologists and
parents; the input of teachers,
peers and support groups can also be
invaluable. The most fundamental
step in improving compliance is to identify
the underlying reason
for non-compliance in each case. Certain difficulties
can be
anticipated and avoided by careful management. Often, in asthma,
the
treatment regimen can be simplified—for example, by
switching to once
daily
31 dosage of
inhaled corticosteroids;
this regimen is effective in mild to moderate
asthma
32,33.
A
fixed combination of inhaled medications can be at least as
effective as use
of separate
inhalers
34,35,36;
patients prefer
fixed
combinations
35
though no clear benefit in terms of compliance
has yet been
demonstrated
34,35,37.
The time of a once-daily
dose may be relevant. Jonasson
et
al.38 measured
compliance
over twenty-seven months in 122 children aged 7-16. In the 89
who
completed the study, compliance with a twice daily regimen
was slightly higher
for evening doses (47%) than for morning
doses (41%).
Other strategies include discussions to reduce the fear of side-effects and
a written and talked-through personal instruction plan for day-to-day therapy.
We know that only 50% of a consultation tends to be remembered, so written
instructions are helpful. The clinician should talk directly to the adolescent
in the presence of the parents. Leaflets and videos, especially on inhalation
techniques, are available. An asthma nurse specialist can be of great help in
this setting. The patient needs to gain an understanding of the inflammatory
processes in asthma and the different functions of ‘preventer’ and
‘reliever’
inhalers2. A
consistent relationship, one to one, with a healthcare professional is
desirable and a practice nurse will often be that person. Adolescents require
privacy, respect and confidentiality in clinical consultations. In addition,
well-designed peer-led education programmes can improve asthma control in
adolescents39.
Attendance at follow-up appointments is important, and in several large
studies only about 50% of adolescents kept their
appointments40,41,42.
Those who understand the potential hazards of non-adherence seem to have
better attendance records than those who do
not41. Reminders
and other incentives can make a difference. Direct telephone call reminders
before clinical appointments increased clinic attendance by 26% in a
randomized controlled
trial42. In an
Australian study, a group of 15 and 16-year-olds were provided with
educational material, including videos, games and songs. Preceded by
individual teaching, this intervention resulted in clinically relevant
improvement in asthma
control43.
| Box 1 Factors improving compliance
Once or twice daily regimen
Open and honest reporting of compliance
Discussion of agreed treatment plan
Written treatment plan
One-to-one professional relationship with doctor or nurse
Patient education, leaflets, videos
|
The role of special adolescent clinics is under much discussion. So far
there is no convincing evidence that they offer specific advantages over the
current approach, provided it is targeted at the patient with relevant support
to the parents. Recommendations for improving compliance are summarized in Box
1.
|
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INTRODUCTION
REASONS FOR NON-COMPLIANCE
