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The best asthma treatment plans fail when families don't cooperate. Learn how to tailor regimens most families will accept and what to do when lack of adherence threatens children's well-being.
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The best asthma treatment plans fail when families don't cooperate. Learnhow to tailor regimens most families will accept and what to do when lackof adherence threatens children's well-being.
Asthma is difficult to manage, and most pediatricians have seen patientswhose asthma seems resistant to all their efforts at control. A child withasthma might not respond to prescribed therapy for many reasons: an intercurrentviral infection, allergens in the environment, poor inhaler technique, ormedications not potent enough for the severity of the asthma. Less commonly,children fail to respond because of untreated sinusitis or gastroesophogealreflux. But before you embark on a potentially expensive and time consumingsearch to find the explanation, we have a simple suggestion: Find out whetheryour patient is actually following the treatment plan you have prescribed.You may be surprised at what you discover.
Poor adherence to asthma medication regimens has been reported in 30%to 70% of patients in various studies.1 The consequences includeincreases in emergency room use, hospitalization, and death rates. Sideeffects and toxicity increase, as patients with recalcitrant symptoms aretreated with higher doses and stronger medications. We often see patientsin consultation who are on high doses of multiple medications, none of whichare taken as prescribed, and we have helped them control their asthma withmuch smaller doses of fewer medications by improving their adherence. Thisarticle will report some of the ways we measure adherence and how we approachthe problem with our patients. While we are concerned here primarily withmedication regimens, bear in mind that asthma control also depends on followinginstructions about measuring peak flow, using inhalers properly, reducingallergen exposure, and seeking help promptly for acute exacerbations.
Some treatment regimens are more conducive to adherence than others.In general, adherence is less likely when therapy is prolonged, when medicationis used prophylactically, when the consequences of non-adherence are delayed,when medications are expensive or hard to use, and when families are concernedabout potential side effects.1 Unfortunately, most of these conditionsare characteristic of asthma therapy. Adherence is also related to severityof illness; among asthma patients, those with moderate asthma are more likelyto be adherent than those with mild or severe disease.
Adherence is also influenced by individual and family characteristics.Adherence is more difficult to achieve with children who have cognitivelimitations or emotional problems and in families that do not provide adequatesupervision. In some poorly functioning families, for example, even veryyoung children may have the responsibility for administering their own ortheir sibling's medication. Strong alternative health beliefs may also bea barrier to adherence; families may be reluctant to use medications atall, especially long-term control medications at times when the child isnot having symptoms. And families that distrust their physician, for whateverreason, are less likely to follow treatment plans.2
Adherence can be assessed in a number of ways. We will review the advantagesand limitations of various approaches.
Serum concentrations and tracer additives. Adherence to some medicationregimens can be measured directly through serum drug concentrations. Theophyllineis an example. Undetectable or very low theophylline concentrations arecommon in children who come into an emergency department for asthma care.3However, with the decline in the use of theophylline, this way of measuringadherence is not as useful as it once was. Currently, tracer agents arebeing developed that can be included in both inhaled and oral medicationsto help assess adherence, but these agents are not yet available for clinicaluse.
Counting pills and puffs. It is also possible to measure how much medicationa child has used by counting how many pills are left since the last visit,or weighing canisters to see how many puffs have been taken. Be aware thatsome patients "dump" medication just prior to a visit if theyknow they are going to be checked.
Electronic monitors that record the number of times an inhaler has beenactivated are commercially available. Also, there are medication bottlesthat will record the date and time whenever the bottle is opened. Thesedevices are generally used in drug studies where adherence has serious implicationsfor drug licensing and dosing. We sometimes use them with patients who havesigned behavioral contracts or for whom poor adherence has especially severeconsequences. Although they are infrequently used by community pediatricians,one electronic monitor, the Doser, is inexpensive and will be availableat many community pharmacies within the next year (Newmed Corp., Newton,MA, 617-243-0222).
Clinical judgment. Most physicians rely on clinical judgment to gaugeadherence. Unfortunately, numerous studies have shown that physicians consistentlyoverestimate patients' adherence to the regimens they prescribe.3Patients' own reports, gathered from interviews, diaries, or questionnaires,also tend to overestimate adherence. Asthma diary cards are frequently usedin drug studies, but when the card data is compared with objective measuresthe cards generally overstate adherence.3
Interviews are often unrevealing. If you simply ask patients what medicationsthey take, they usually respond with a list of the medications you haveprescribed. Clinicians experienced in exploring adherence issues may beable to get a more accurate answer by asking a different question: "Inan average week, how many puffs of your inhaler do you actually get?"When children answer that question truthfully, parents are often surprisedto learn that the number of actual puffs is far lower than the number prescribed.This techique doesn't always work, however. Many children and parents arenot candid. When we compared physician assessment of adherence after a patientinterview to information on refills from the patient's pharmacy, we discoveredthat physicians could not reliably identify patients with poor adherence.In 54 patients, physicians were accurate in assessing adherence only about50% of the time.4
Calling pharmacists for a refill history is not difficult; we have hadgreat success with this approach.4 We usually write prescriptionsfor a month's supply of medication, with permission for refills. When wewant to check on a patient we haven't seen for several months, we call thepharmacy while the patient is in the office. The pharmacy can tell us howmany times the prescription has been refilled or whether it has been transferredto another pharmacy. If the refill history is inadequate, the patient islikely to be non-adherent. Of course, we can't be sure the patient actuallytakes the medication even if the record shows an appropriate number of refills.But it is more likely.
The pharmacists we call, with few exceptions, have been willing to lookfor the information in their computer while we are on the phone. In Florida,a Board of Pharmacy rule mandates "prospective drug review" byall pharmacists to identify both overutilization and underutilization. Whena pharmacist recognizes a problem, she or he is required to consult withthe prescriber.
Because we have an extensive clinical practice in asthma and a long-standinginterest in adherence, we have evolved a number of strategies for improvingadherence. Some of them--education, individualization, close monitoring--areapplicable to all our asthma patients. A few-- home nursing visits, asthmapartners--are reserved for particularly difficult situations.
Educating patients and parents. Education is critical to getting familiesto understand the inflammatory nature of asthma and accept the need forlong-term daily maintenance therapy. The National AsthmaEducation and PreventionProgram's second expert panel report, published in 1997, has many helpfuland timesaving suggestions to aid in your educational efforts.5
Tailoring regimens to families' needs. Families need to be involved inselecting a medication regime that fits everyone's daily schedule, and thatthe family can afford. Negotiating compliance directly with the child issometimes the best approach
Picking the most acceptable medications. Differences in ease of use,efficacy, and potential side effects should be considered. Other thingsbeing equal, children are more likely to take an oral medication than onethat is inhaled.4,6 The table below compares available pediatricasthma medications for characteristics likely to affect adherence. The sideeffect potential given in the table combines objective evidence with theauthors' experience of parental perceptions for the various medications.Thus, both theophylline and inhaled corticosteroids are ranked high in sideeffect potential, although both medications are considerably less likelyto produce adverse affects than many parents fear.
Having the right attitude. Adherence is likely to be better in patientswho perceive their physicians as caring, interested, and willing to workwith them.
Understanding families' health beliefs. Exploring families' beliefs abouthealth can be very enlightening. Accepting use of non-traditional approachesto health care, as long as they do not interfere with the medical regimenwe suggest, is a way of practicing culturally and family-sensitive medicine,and may improve adherence. Occasionally, families come to the physiciansimply to satisfy another family member, with no intention of followinga treatment plan. Some families do not understand allopathic medicine andexpect alternative therapies to be prescribed. Some have a distinct ideaof specific therapies they want, and simply need a physician to write theprescription. When this occurs, a more basic discussion of the goals forthe visit is in order.
Close follow-up. Frequent physician visits help reinforce the messagesthat asthma is a potentially serious disease, that medications are usefulin controlling it, that the patient's health is your primary concern, andthat close monitoring helps you adjust the child's medication to find thelowest effective doses. Primary care pediatricians can play a very significantrole in this aspect of care, even for children with severe asthma who arealso seeing a specialist; families will find checking in with their primarypediatrician between specialist visits convenient and less costly than multiplespecialist visits.
Home visits and counseling. When adherence is a problem, home visitsby an asthma nurse can also be helpful in monitoring the use of medicationsand discovering whether environmental allergens are contributing to theasthma severity. Patients with psychological issues may benefit from counseling.
Asthma partners. When parents cannot reliably monitor a child's adherence,it may be possible to identify another adult who is willing to act as achild's "asthma partner". The partner can be a relative, godparent,neighbor, family friend, church member, or school nurse who is willing totake responsibility for making sure the treatment plan is followed. Forthis strategy to work, the child and the parents must agree to give theasthma partner authority to intervene. Child, parent, and partner must agreeon the parameters of the relationship, embodied in a written plan. The asthmapartner must receive the same kind of asthma education you provide for parentsand should be encouraged to come with the child for office visits.
In our practice, we've found that although these strategies work withmost families, there are times when none of them is effective. These aresituations in which we have provided parent education, negotiated the medicationswith the family, and been as caring and open as we can be. We have exploredthe option of an asthma partner, but it hasn't worked out. The parents maysay they will follow the treatment plan but repeatedly fail to do so. Implementingand maintaining a complex therapy for a chronic disease is more than somefamilies can achieve. Parents who have poor parenting skills, little controlover their social and economic circumstances, or multiple stressors in theirlives may not have the energy to maintain any kind of schedule.
If the asthma is mild or the patient is old enough to take responsibilityfor treatment decisions, we may decide not to continue the doctor/patientrelationship. We discuss the decision with the family, making it clear that--despiteour best efforts to help manage the child's disease--we aren't getting anywhere.We ask them to call for another visit if they decide they want to participatemore fully in the kind of medicine we practice. We warn them that whiledeaths from asthma are infrequent, they do occur even in patients whoseasthma has been mild, and we caution them to pay attention if the child'sasthma seems to be worsening.
It is important to emphasize that we get to this stage only after repeatedattempts to develop a partnership with the family have failed. Discharginga patient for chronic poor adherence is controversial and should not bedone lightly.For an example of the kind of situation in which we may terminatea relationship with a patient, see "Vivian's case" below.
Adolescent patients may be able to take responsibility for their owntreatment, although this is not always the case. We believe that patientswho are old enough to make their own day-to-day life decisions should decideon whether they will accept asthma therapy. Some patients refuse.
Termination does not seem to us to be an option for some families withpoor adherence, however. When the child is very young, the condition islife threatening, or emergency room visits are frequent, we feel obligatedto take further steps. Here are some of the interventions we use.
Daily nurse's visits. The first option is to arrange for a visiting nurseto make daily visits.These visits can be arranged through home health careagencies. In our state, Medicaid has paid for these visits without objection.Many HMOs have chronic disease management programs involving home visits,although not usually on a daily basis. Most families have been willing toaccept these visits, although their cooperation in terms of being at homeand making sure the child and medications are there at the time of the scheduledvisit is sometimes a problem. We try to adjust the medications to a once-a-dayschedule, to mesh with the nurse's visit. The more potent inhaled corticosteroids(budesonide or fluticasone) have fair efficacy given once a day. Addingmontelukast or a reliably absorbed once-a-day theophylline product (Unidur,for example) may provide additional benefit. If inhaled corticosteroidsare given only once a day, the best time appears to be between 3 and 5 p.m.Studies of the chronobiology of asthma have shown the most significant inflammationoccurs in the early morning hours, and steroid pharmacotherapy dictatesuse about 12 hours before effects are seen.7 This schedule workswell when after-school home nursing visits are convenient for the family.Under-utilization of inhaled bronchodilators is not usually a problem, soif the nurse gives the controller medications, patients usually do well.
After a period of time, however, many families begin to object to thenurse's visits. If the child's asthma has improved, the family may recognizethe benefits of continued adherence. In some families, the child may beold enough to take on this responsibility, once he or she sees the benefits.Being able to participate in sports, sleeping through the night, and being"normal" is a unique experience for some children with asthma,and they are willing to work to maintain this new status.
Signing a contract. The contract incorporates the child's treatment plan,detailing the steps the family is to take. We specify how we will monitortheir adherence and what we will accept as adequate adherence. We agreeto be available at any time for questions and medical problems, and thefamily agrees to adhere to the plan. We explain that adherence to the treatmentplan is vital because the patient has a life-threatening condition, andtherefore, poor adherence constitutes medical neglect. If that occurs, weare required by law to inform the state child protection agency. Our continuedinvolvement in the care of the patient is contingent on signing this contract.For an example of a case in which this approach was used, see "A fatheralone" below.
A contract of this sort is a final measure to help the child. It is neverinitiated lightly. Before we confront a family with this option, we discussthe case with an interdisciplinary team that includes physicians, nurses,social workers, clinical pharmacists, and sometimes a psychologist. In ourminds, this admittedly coercive treatment is justified only when continuedpoor adherence poses a significant risk to a child's health and safety.
We have used this approach in a number of families. In one case, simplysigning the contract was enough to change the family's behavior. In others,investigation by child protective services has led to intensive supervisionor temporary foster placement. In each of these children, asthma controlimproved dramatically as a result of improved adherence, either by the fosterfamily or because the contract approach induced the family to place a higherpriority on asthma care.
Depot medication. For older patients with life-threatening asthma whorefuse to take daily controller medication, we have also used a repositoryinjection of triamcinolone acetate.8 In these cases, the patienthas signed an informed consent. The drug is active for approximately threemonths, during which time patients develop steroid side effects such asacne, hirsutism, and weight gain. During the next three months, these changesregress, and the asthma usually remains in remission. We have given as manyas three such injections over 18 months to one patient for whom we believethey were life-saving.
Medical neglect. Where evidence of medical neglect is clear and childrenare at immediate risk, referral to child protection agencies must be immediate.We do not use behavior contracts in these situations. Our experience suggeststhat it is very important for the physician to educate the agency's investigatorabout medical neglect and the possibility of a fatal outcome. Otherwise,in the absence of physical abuse, the investigator may not appreciate theseriousness of the situation. Previous studies support the concept thatpoor adherence in children with asthma may constitute medical neglect.7,9,10
Residential treatment. In the past, severely affected asthma patientswere sometimes treated in residential facilities. We believe that the interventionsdescribed here are just as effective, and certainly less costly. However,there probably are patients for whom residential care--if it is available--wouldbe the best option, as it has been shown to be for some adolescents whohave diabetes.11 The decision-making process we go through whenadherence problems persist is shown in the flow chart below.
Adherence is central to effective asthmamanagement and to the provisionof medical care. Focusing on the reasons some patients do not follow treatmentregimens can help us understand their struggles and lead us to change ourapproach to them and their problems. Paying attention to adherence cannothelp but change the way we practice, make us better physicians, and improvethe outcomes for our patients.
1. Bender B, Milgrom IL, Rand C: Nonadherence in asthmatic patients:Is there a solution to the problem? Ann Allergy Asthma Immunol 1997;79:177
2. Spilker B: Methods of assessing and improving patient compliance inclinicaltrials, in Crame JA, Spilker B (eds): Patient Compliance in Medical Practiceand Clinical Trials. New York, Raven Press, 1991
3. Rand C, Wise R: Measuring adherence to asthma medication regimens.Am J Respir Crit Care Med 1994; 149:S69
4. Sherman J, Flewelling PJ, Lynn W, Hendeles L: Calling the patient'spharmacist to identify poor adherence to asthma medications. Am J RespirCrit Care Med 1997;155:A973
5. National Asthma Education and Prevention Program. Expert Panel Report2: Guidelines for the Diagnosis and Management of Asthma. Bethesda, MD,National Institutes of Health Pub No. 97-405 1, 1997
6. Kelloway J, Wyatt R, Adlis S: Comparison of patients' compliance withprescribed oral and inhaled asthma medications. Arch Intern Med 1994;154:1349
7. Beam WR, Weiner DE, Martin RJ: Timing of prednisone and alterationsof airway inflammation in nocturnal asthma. Am Rev Respir Dis 1992;146:1524
8.Ogirala RG, Aldrich TK, Prezant DJ, et al: High-dose intramusculartriamcinolone in severe, chronic, life-threatening asthma. N Engl J Med1991;324:585
9. Boxer GH, Carson J, Miller BD: Neglect contributing to tertiary hospitalizationin childhood asthma. Child Abuse Negl 1988;12:491
10. Godding V, Kruth M:Compliance with treatment in asthma and Münchausensyndrome by proxy. Arch Dis Child 1991;66:956
11. Gettken G, Lewis C, Johnson S, et al: Residential treatment for youngsterswith difficult-to-manage insulin-dependent diabetes mellitus: An evaluationof 52 patients. J Pediatr Endocrinol Metab 1997;10:517
DR. SHERMAN is Professor, Department of Pediatrics, and Chief, Pediatric PulmonaryDivision, University of Florida College of Medicine, Gainesville. He serveson Merck and Company's speakers' bureau.
DR. HENDELES is Professor, Department of Pharmacy Practice, College of Pharmacy, and Department of Pediatrics,University of Florida College of Medicine, Gainesville. He has researchgrants from Merck and Company and serves on their speakers' bureau, andis also a consultant to Glaxo.