Journal of Pediatric Psychology, Vol. 15, No. 4, 1990, pp. 437-458

Kathleen Lemanek1 University of Pennsylvania School of Medicine Received January 5, 1990; accepted January 31, 1990

Asthma is a common chronic illness of childhood that requires coordinated efforts by children, families, and health care professionals for proper medical management. The medical management of pediatric asthma involves pharmacological and behavioral recommendations to both prevent and control asthma attacks. However, management of these attacks is hindered by failure to adhere to the prescribed recommendations. While the literature on adherence in pediatric asthma has grown over the past 10 years, few definitive statements can be made about causes and treatment. Various issues related to adherence and pediatric asthma are reviewed in this paper, including assessment methods, factors influencing adherence, and treatment strategies. Recommendations for future research are provided, starting with more controlled randomized studies. KEY WORDS: adherence; asthma; pediatrics; medical management.

Failure to adhere to medical regimens has been called "the best documented but least understood health-related behavior" (Becker & Maiman, 1975, p. 11). Based on overall adherence rates reported by various researchers (Litt & Cuskey, 1980; Sackett & Snow, 1979), the nonadherence rates for longterm regimens and for pediatric populations can be estimated to be 54 and 50%, respectively. Looking specifically at the medical management of asthma, studies have reported nonadherence to be from 17 to 90% in children •All correspondence should be sent to Kathleen L. Lemanek, Division of Child Development and Rehabilitation, The Children's Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, Pennsylvania 19104. 437 0I46-8693/90/08OO-O437SO6.0O/0 © 1990 Plenum Publishing Corporation

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Adherence Issues in the Medical Management of Asthma

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OVERVIEW OF ASTHMA Asthma is a common childhood chronic illness, affecting approximately 5 to 15970 of children less than 15 years of age (American Lung Association, 1975). The age of onset is usually between 3 and 8 years and occurs most often in preadolescent boys (i.e., 14 years and younger) (American Lung Association, 1975). It is typically defined as recurrent episodes of wheezing or dyspnea (i.e., labored breathing), characterized by a significant increase in airflow resistance and followed by symptom-free periods (Reed & Townley, 1978). Chai (1975) considered three components of this definition to be critical and to signify the heterogeneous nature of asthma: (a) intermittent — attacks appear on an aperiodic basis, (b) variable—attacks vary in severity from mild episodes (e.g., slight wheeze) to status asthmaticus (asthmatic crisis that is intense and continuous and does not respond to usual forms of treatment), and (c) reversible—airways may revert to normal either spontaneously or after treatment. The signs or symptoms of asthma are equally varied and include, for example, trouble breathing, chest pain, neck-throat tightness, coughing, fatigue, and runny nose and eyes. These symptoms result from, in general, the hypersensitivity of air passages or the release of histamine and SRS-A (slow-reacting substance of anaphylaxis) as part of an allergic reaction. Whichever of these two mechanisms is operating, it has long been established that a genetic predisposition exists in the development of different forms of asthma (Pearlman, 1984; Sibbald, 1980). Results from epidemiologic and challenge studies indicate a higher prevalence of asthma (e.g., Sibbald, 1980) and airway hypersensitivity (Townley et al., 1979) in families of

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and adolescents (e.g., Baum & Creer, 1986; Chryssanthopoulos, Laufer, & Torphy, 1983; Miller, 1982). These varying nonadherence rates have prompted physicians, psychologists, and health educators to develop strategies to increase adherence in asthmatic children and their families (Weinstein, 1984). A review of the clinical characteristics and of the medical management of asthma is needed to better understand the obtained nonadherence rates. In addition to providing an overview of asthma, this paper reviews assessment methods and treatment stategies that have been either proposed or directly used to assess and to improve adherence in asthmatic children. Factors that have been implicated as influencing adherence in pediatric asthma, such as regimen and illness characteristics, are also delineated. Throughout this paper, methodological issues related to the adequacy of assessment methods and experimental designs are addressed as well as recommendations for future research.

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patients with asthma compared to families of nonasthmatic controls. Data also support the concept that allergy acts to increase the severity of asthma and airway hypersensitivity (Sibbald, 1980; Zimmerman et al., 1988). Research continues, however, on delineating the specific pattern of inheritance in the different forms of asthma. Age of onset is one of the few prognostic factors that appears consistently in the literature. In general, an earlier age of onset is associated with a better prognosis except when asthma begins under age 2 (cf. Creer, Renne, & Chai, 1982; National Institutes of Health, 1983). Other factors identified as negatively affecting the prognosis of asthma include artificial feeding, history of allergic disease in first-degree relatives, and severe symptom presentation (Kuzemko, 1980). Although the exact percentage of children who are symptom-free by late adolescence is unknown (National Institutes of Health, 1983), findings from longitudinal surveys (e.g., Peckham & Butler, 1978: Rackemann & Edwards, 1952) indicate that an approximately equal percentage of children (i.e., 50%) are symptom-free or continue to experience symptoms to varying degrees. However, the remission rates for children with mild asthma compared to severe asthma seem to be different (cf. Creer et al., 1982). One study (Aas, 1963) reported that 73% of children classified with mild asthma were later regarded as "cured" in comparison to 30% of children with severe asthma. Whether asthma is classified as either mild or severe, proper medical management is necessary to ensure that children do not suffer needlessly while they wait to "outgrow it." The medical management of asthma has been divided into three phases: (a) maintenance, (b) control of acute attacks, and (c) status asthmaticus (Chai, 1975). The maintenance phase involves daily administration of such drugs as theophylline or cromolyn sodium to prevent occurrence of asthma attacks. Other medications (e.g., beta-adrenergic inhalers, antihistamines) are taken as needed to control acute asthma attacks or specific allergic symptoms (e.g., stuffy nose, watering eyes). Injections of epinephrine (adrenalin) and oral ingestion of corticosteroids are usually given in emergencies (e.g., during an asthmatic crisis) or in severe cases of asthma. An additional treatment strategy for allergic asthma is to reduce allergic reactions to common allergens through immunizations. Finally, behavioral recommendations include the avoidance of allergens (e.g., dog hairs, dust) and irritants (e.g., cigarette smoke, perfumes), and the use of moderate exercise (cf. Deaton, 1985). In general, the goal of management is to control asthma symptoms and to maximize pulmonary function, although not necessarily normalize it (Pearlman, 1984). The importance of adhering to medical regimens is highlighted by the negative consequences resulting from nonadherence. These negative consequences consist of, for example, increased expenses from unused medications and unnecessary laboratory tests, exacerbation of symptoms, and,

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ASSESSMENT METHODS

A variety of methods have been utilized to assess medical adherence in pediatric asthma. These methods can be categorized as either direct of indirect depending on the accuracy with which they determine the amount of medication ingested (Epstein & Cluss, 1982). Individual assessment methods are reviewed according to this categorization. Direct Methods The most common direct method of assessment has been biochemical assay of blood/serum samples either alone (e.g., Sublett, Pollard, Kadlec, & Karibo, 1979) or in combination with saliva samples (e.g., Eney & Goldstein, 1976). Samples are drawn to determine the presence and level of

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possibly, death (Epstein & Cluss, 1982). Although asthma-related deaths are low compared to the number of deaths from other illnesses (e.g., cancer), the mortality rate may be as high as 1 to 2% (Rubinstein, Hindi, Moss, Blessing-Moore, &Lewiston, 1984; Strunk, Mrazek, Fuhrmann, & LaBrecque, 1985). Various physiologic variables (e.g., seizures associated with asthma attacks, respiratory failure) and psychologic variables (e.g., depressive symptoms, denial of illness, or severity of symptoms) have been identified as risk factors for dying in children and adolescents with severe asthma (Fritz, Rubinstein, & Lewiston, 1987; Strunk et al., 1985). Nonadherence to medical regimens also has been linked to asthma-related deaths through such mechanisms as abuse or overuse of inhalants which may impair adherence to other aspects of the medical regimen, family difficulties which could delay seeking medical care when necessary, and failure to maintain a therapeutic level of medication or to increase the dose during emergencies (Birkhead, Attaway, Strunk, Townsend, & Teutsch, in press; Strunk, 1987). The importance of adherence is related to the morbidity of pediatric asthma as well as to mortality rates. The two areas most clearly impacted by asthma are school functioning and family income (Creer et al., 1982). Specifically, asthma is a leading contributor to school absenteeism and can severely restrict a child's participation in school-related activities (Creer, 1979). In addition, asthma management may account for anywhere from 2 to 30% of a family's income, excluding costs related to lost work time and home alterations required as part of the treatment program (Creer et al., 1982; Vance & Taylor, 1971). Diverse assessment methods and treatment strategies related to adherence have been employed to ultimately reduce the morbidity and mortality of pediatric asthma.

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Indirect Methods A number of indirect methods for assessing adherence have been reported in the literature. The two indirect methods most related to medication adherence have been self- or parent-monitoring of medication-taking behavior (e.g., frequency, dose) and asthma attacks (e.g., frequency of wheezing, precipitants) (Baum & Creer, 1986; Cluss et al., 1984; Weinstein & Cuskey, 1985), and pill counts recorded by parents or physician (Baum & Creer, 1986; Tinkelman, Vanderpool, Carroll, Page, & Spangler, 1980). Self-monitoring and pill counts are, however, subject to falsification and may, therefore, overestimate adherence (Epstein & Cluss, 1982). For example, children may complete monitoring forms just before appointments or may throw away or hide unused medication. In addition, the pill count method does not provide information about other medication-taking behavior (e.g., timing of medication, proper dose). The accuracy of both methods appears to be enhanced if validity checks of the behaviors being monitored are conducted by a caregiver (e.g., Baum & Creer, 1986) or if children/parents are unaware that pill counts are being taken (Voyles & Menendez, 1983). Aside from these methods, pulmonary function tests of central airway obstruction (i.e., Peak Expiratory Flow Rate; PEFR) have been increasingly performed using peak flow meters. Peak flow measurements have been

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theophylline-based compounds in that theophylline is the only bronchodilator that can be measured directly from blood levels (Rylance & Moreland, 1980). A less frequently used direct method has been the addition of a tracer (i.e., Vitamin B2) to theophylline-based compounds, which then fluoresces under ultraviolet light when examined in urine (e.g., Cluss, Epstein, Galvis, Fireman, & Friday, 1984). While blood/serum assays may be the most direct method of detecting adherence, they still provide only a yes or no answer and do not measure erratic usage or reduction in adherence with time (Spector, 1985). Furthermore, assays are limited by individual differences in the absorption rate of theophylline, especially with sustained-release preparations, and by food interactions (Epstein & Cluss, 1982; Spector, 1985). For example, a study by Pedersen and Moller-Petersen (1984) found delayed absorption and reduced bioavailability of Theo-dur Sprinkles when taken with food compared to when taken on an empty stomach. This finding is particularly relevant since it is not uncommon for Theo-dur Sprinkles to be mixed with food (e.g., cereal) when given to children who have difficulty swallowing tablets or capsules. Finally, assays are typically expensive to perform, are invasive (especially if done on a regular basis), and not all assay procedures control for the ingestion of foods also containing xanthines (e.g., cocoa, chocolate).

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Correspondence Among Methods Most studies on nonadherence in pediatric asthma have used multiple methods because of low correlations between measures and of problems inherent in each measure (Creer et al., 1982). For example, inconsistencies found between serum theophylline levels and PEFRs may be due to a number of problems, including long time interval between intake of theophylline and determination of its level, effort-dependent nature of peak flow meters, or concurrent treatment with antibiotics. Additional studies reported by Creer et al. (1982) also have shown little or no correlation between patients' reports

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obtained both by health care professionals during office visits (Weinstein & Cuskey, 1985) and by children at home (Baum & Creer, 1986; Cluss et al., 1984). These measurements have been demonstrated to be objective indices of pulmonary functioning, if repeated measurements are taken over time due to their variability within and across days (cf. Creer et al., 1982). However, the meters are extremely effort-dependent and require proper use for reliable measurements to be obtained. The most indirect assessment method has been parent/child interviews or questionnaires focusing on adherence and knowledge of illness- and treatment-related issues (Smith, Seale, & Shaw, 1984; Voyles & Menendez, 1983). Interview or questionnaire data obtained from children and/or parents seems to be a simple method for detecting nonadherence since those who admit to being nonadherent are typically found to be so through other more direct methods (Gordis, Markowitz, & Lilienfeld, 1969). For example, Smith et al. (1984) found a close association (i.e., better than 90%) between stated adherence to theophylline therapy and actual plasma theophylline levels. However, this method is considered insufficient if there is a risk that some individuals misrepresent themselves as adherers (Epstein & Cluss, 1982). Various other studies (e.g., Lewis, Rachelefsky, Lewis, de la Sota, & Kaplan, 1984; Weiss & Hermalin, 1986) have used such measures as parent/child knowledge questionnaires and utilization rates (e.g., emergency room visits, number of hospitalizations) to evaluate the effectiveness of selfmanagement programs for asthma. However, different knowledge questionnaires have been utilized by individual management programs and the psychometric properties of these questionnaires have not been consistently documented. The Parcel Knowledge of Asthma Questionnaire is at least one questionnaire where estimates of internal consistency have been obtained for children and adults (Kuder-Richardson r = .56 and r — .88, respectively) (Parcel, Nader, & Tiernan, 1980). The relationship between questionnaires, utilization rates, and more direct methods of assessing adherence also have not been explored.

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Therapeutic Outcome Unfortunately, there also is a lack of data associating adherence with therapeutic outcome. Clinically, attempts are made to maintain theophylline levels between 10 and 20 pg/ml, but, again, it is not uncommon for children to be adherent and symptomatic, especially when pollen counts or pollution levels are high. The results of one study (Chryssanthopoulos et al., 1983) suggested that the failure of epinephrine to reverse the effects of an acute asthma attack may be due to inadequate plasma theophylline levels. That is, the poorest responding group to epinephrine (i.e., those who needed 3 injections) had the lowest percentage of adherent subjects compared to a fair group (i.e., 2 injections) and good group (i.e., 1 injection). However, in a study by Deaton (1985) data were collected on actual and predicted task performance (e.g., selected WISC-R subtests), rated adaptiveness of adherence decisions, and medical and quality of life outcomes from 30 asthmatic children and their parents. Results showed that parental adaptiveness and accuracy of predictions were correlated with better outcome, but degree of adherence was not. Determining the relationship between adherence and therapeutic outcome is even more problematic when focusing on medications that are taken on an "as-needed" basis (i.e., PRN) because of the ease in falsifying reports of when and how much medication was taken. Kinsman, Dirks, and Dahlem (1980) have reported on four separate medication usage patterns for PRN

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of respiratory distress and pulmonary function tests (Rubinfeld & Pain, 1976), and between frequency and duration of hospitalizations for asthma and medication requirements or pulmonary tests (Creer, Weinberg, & Molk, 1974). Although these studies did not focus on adherence per se, they further highlighted the need for multiple assessment methods when investigating adherence in pediatric asthma. The heterogeneous nature of asthma, including the variety and severity of symptoms across attacks and children, increases the difficulty of reliably assessing adherence. Currently, there is no "gold standard" for assessing adherence or therapeutic outcome in asthma. Although most investigators use theophylline levels of less than 5 /tg/ml as criteria for nonadherence, the range between 5 and 9 /tg/ml is still considered subtherapeutic. As such, many children classified as adherent may evidence poor clinical outcome because of subtherapeutic theophylline levels. A few studies (Chryssanthopoulos et al., 1983; Sublett et al., 1979) have added a category for those children whose theophylline levels fall between 5 and 9 fig/ml (i.e., partial adherence), but they have not thoroughly delineated the distinction between nonadherence, partial adherence, and total adherence.

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medications which may foster research in this area: (a) appropriate usage, (b) overusage, (c) underusage, and (d) arbitrary usage. Future research is clearly needed to evaluate the relationship between adherence and therapeutic outcomes as well as the use of different criteria of adherence for daily and PRN medication. FACTORS INFLUENCING ADHERENCE

Regimen and Illness Characteristics The complexity of the therapeutic regimen (e.g., multiple medications taken at different and odd times) has been frequently associated with lowered adherence rates (Spector, 1985; Voyles & Menendez, 1983). However, equivocal results have been found when examining the relationship between adherence and individual aspects of the regimen (e.g., number of medications, frequency of dose, disruption to activities) (Becker et al., 1978; Christiaanse, Lavigne, & Lerner, 1989; Smith et al., 1984; Smith, Seale, Ley, Shaw, & Braes, 1986; Tinkelman et al., 1980). Complicated delivery systems of medication also have been associated with nonadherence (Smith et al., 1984; Voyles & Menendez, 1983). For example, Smith and colleagues (1984) found lower levels of adherence when medication was prescribed as a metered-dose aerosol rather than as a nebulized solution. A final regimen characteristic that has been considered to negatively affect adherence is annoying or intolerable side effects (e.g., vomiting, excitability in theophylline-based compounds; weight gain with corticosteroids) (Spector, 1985; Voyles & Menendez, 1983). Certain illness characteristics, such as the variable presentation of symptoms and the variable effectiveness of treatment, have been hypothesized or shown to be nonconducive to adequate adherence, especially in regard to prophylactic regimens (Becker et al., 1978; Voyles & Menendez, 1983). For instance, Becker et al. (1978) found inconsistent effects of theophylline on symptom reduction along with poor adherence in their pediatric sample. In a related study (Smith et al., 1986) doubts about the safety and necessity

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Several factors have been identified from clinical experience and research that influence adherence in pediatric asthma. These factors can be grouped into one of four categories: (a) regimen and illness characteristics, (b) health care issues, (c) demographic characteristics, and (d) psychological correlates. Factors within each category are presented separately. In addition, Table I provides information about articles that have either discussed or examined these factors.

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Health Care Issues Issues concerned with the quality of health care and the communication between doctor/patient (parent) have been linked to adherence. Increased adherence has been associated with satisfaction with the care provided, perception of physicians as being interested and approachable, and close supervisison during outpatient visits (Smith et al., 1986; Spector, 1985). However, Becker et al. (1978) found that adherent mothers of children with asthma were more skeptical regarding physicians and medical care, yet more dependent on physicians than nonadherent mothers. The convenience of followup appointments (e.g., traveling short distances, accessible location) also may be more related to adherence (Spector, 1985) than to the number of office visits (Weinstein & Cuskey, 1985) or to the time period between follow-up appointments (Smith et al., 1986). Specific aspects of doctor/patient (parent) communication that have been cited as reasons for nonadherence consist of insufficient and incorrect information regarding the nature of asthma and treatment management, unclear instructions presented in technical terms, and failure to repeat and rephrase instructions (Schraa & Dirks, 1982; cf. Sublett et al., 1979). These aspects are probably indirectly linked to adher-

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of daily medication, and a belief that symptoms were unlikely if prescribed medications were not taken, were factors related to nonadherence. As such, it seems that the actual effectiveness of medications as well as beliefs about their usage play a role in adherence. Knowledge about asthma and management behaviors also appears to contribute to whether or not children and families are adherent. To illustrate, a study by Rubin, Bauman, and Lauby (1989) found that reported selfmanagement behavior was significantly related to knowledge about asthma, but the relationship was nonlinear. That is, as knowledge increased above a threshold level, there was little change in reported management behavior. With few exceptions (Becker et al., 1978), such illness characteristics as duration and severity of asthma have not been associated with differences in adherence in pediatric asthma (Smith et al., 1986; Weinstein & Cuskey, 1985). In general, firm conclusions cannot be drawn from the available literature on the influence of regimen and illness characteristics on adherence in pediatric asthma. Most factors considered to decrease adherence have been identified through clinical descriptions (e.g., negative side effects). Where empirical data exist, findings have been inconsistent, showing either no relationship to adherence or a negative influence. In addition, the majority of studies have lacked sufficient experimental control to eliminate questions regarding the internal and external validity of the findings.

38

39

91

Children Parents

Children Parents

Children Parents Children

Becker et al. (1978)

Christiaanse et al. (1989)

Kapotes (1977)

Rubin et al. (1989)

Parents

111

Sample

Author

No. of subjects

R/I DEMO PSYCH

PSYCH

DEMO PSYCH

3-12

7-14

R/I HCI DEMO

Factors studied"

7-17

range (years) 0.9-17

Age

Corr./ multiple regres.; ANOVA

Descrip./ chi-sq.

Corr./linear regres.

Corr.

Design/ stats*

Table I. Articles Related to Factors Influencing Adherence

Asthma managementbehavior related to knowledge, especially in less adjusted subjects: no relationship between management behaviors and other adjustment measures

Inhibited behavior and indifferent parent related to nonadherence

adherence

els; some demo, variables related to

and family climate predictive of adherent mean theophylline lev-

line levels; adjustment

Psychological adjustment predictive of % nonadherent theophyl-

for most demo. variables

related to adherence/ nonadherence except

Many factors

Findings

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Children Parents

39

1-18

R/I DEMO

Clin. descrip.

Crossover nonblind/ r/sign tests

Clin. descrip.

Pre-post control group/ Mann-Whitney U test

De5crip./ chi-sq.

Clin. descrip.

Complexity of regimen and complicated delivery systems related to problems unique to each age group

Increased adherence for twice daily adminministration; age effect

close supervision and social support related to adherence

Complexity of regimen related to nonadherence;

Mixed results

Increased comprehension and decreased complexity related to adherence

Poor dr./pt. communication related to adherence

R/I All factors unrelated to One-gp.preHCI post/z/f tests adherence DEMO °R/I = regimen and illness characteristics, HCI = health care issues, DEMO = demographic characteristics, PSYCH = psychological correlates. *Corr. = correlational study/correlations, Descrip. = descriptive study, Clin, descrip. = clinical description.

Weinstein and Cuskey (1985)

Voyles and Menendez (1983)

11-18 R/I DEMO

20

Tinkelman et al. (1980)

Children

R/I HCI DEMO PSYCH

R/I HCI DEMO

Spector (1985)

0.5-16

Children Parents

Smith et al. (1986) 196

R/I DEMO

1-17

Children Parents

Smith et al. (1984) 200

HCI

Schraa & Dirks (1982)

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Demographic Characteristics Inconsistent results have been found in terms of the relationship between adherence and demographic characteristics. Most studies (e.g., Becker et al., 1978; Smith et al. 1986; Weinstein & Cuskey, 1985), but not all (Christiaanse et al., 1989), have found no relationship between adherence and age, sex, race, and family status. Findings from the study by Christiaanse et al. (1989) revealed that adherence was greater in the following groups: blacks compared to whites, younger children compared to older children, and children from intact families; this latter finding was similar to one reported by Becker et al. (1978). Although data have been mixed on the significance of age, it has been the one demographic characteristic cited most often in the literature as influencing adherence. Although older children may be more nonadherent, the presence of unique problems at each developmental level has been suggested. Reasons for nonadherence in adolescents have centered on denial of illness, rebellion against parents or physicians, concerns with being different from peers, and the frustration and inconvenience of taking medication outside of the home (Tinkelman et al., 1980; Voyles & Menendez, 1983). The difficulty of carrying and taking medication at school (e.g., rules requiring only school nurses to dispense medication) also have been suggested as negative factors of adherence in school-age children (Voyles & Menendez, 1983). In terms of toddlers and preschoolers, factors related to medication delivery systems have been considered to affect adherence (Spector, 1985; Voyles & Menedez, 1983). Some of these factors have included refusal or difficulty swallowing tablets or capsules, lack of coordination need-

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ence by limiting patients* or parents' ability to recall regimen requirements; the latter being directly associated with adherence (Dunbar, 1983; cf. Sublett et al., 1979). Few clinical descriptions or studies have focused on the relationship between health care issues and adherence in pediatric asthma compared to regimen and illness characteristics. The studies that have investigated this relationship have used different adherence measures and criteria to separate subjects into adherent and nonadherent groups. For instance, Weinstein and Cuskey (1985) utilized a cutoff theophylline level of 5 /ig/ml to divide their sample into adherers and nonadherers, whereas Smith et al. (1986) split their sample into four groups based on the percentage of prescribed medication taken (i.e., 0-50%, 51-70%, 71-90%, 91-100%). Without investigation of these impressions and replication of findings, little can be said regarding the influence of health care issues.

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ed to properly use metered-dose inhalers, and fear of masks or mouthpieces that can be attached to inhalers for correct administration of medication. Although age appears to be an important influencing factor, chronological age is probably not the best index to use as a measure of developmental status (see La Greca, 1988). In addition, the inconsistency in findings reported is not surprising given the wide age range of subjects utilized and the different demographic characteristics measured across studies.

The role of the family on adherence in pediatric asthma is unclear since little research has been done in this area. Research with other chronic diseases (e.g., renal disease), however, suggests that various family factors relate to adherence (cf. La Greca, 1988). With regard to pediatric asthma, receiving social support from family and friends has been considered an important factor in increasing adherence (Spector, 1985). On the other hand, a study by Christiaanse et al. (1989) obtained nonsignificant correlations between family environment (e.g., rules and organization) and adherence as measured by either mean theophylline levels or percentage of nonadherent theophylline levels. Family environment also was not predictive of the percentage of nonadherent theophylline levels. Research investigating the relationship between psychosocial adjustment and adherence has produced mixed results. Earlier research (Kapotes, 1977) has noted an association between emotional/behavioral problems, parental attitudes, and poor disease control. More recently, a direct relationship has not been found between specific measures of adjustment, such as selfcompetence or anxiety, and adherence in terms of therapeutic theophylline levels (Christiaanse et al., 1989) or reported self-management behaviors (Rubin et al., 1989). However, when using a measure of overall adjustment (i.e., Child Behavior Checklist), Christiaanse et al. (1989) showed adjustment was predictive of percentage of nonadherent theophylline levels as well as interacting with family environment (i.e., cohesion vs. conflict) to predict mean theophylline levels. That is, nonadherent children were rated as evidencing greater adjustment problems, and children with high levels of behavior problems coupled with high levels of conflict in the family were especially likely to be more nonadherent. Rubin et al. (1989) also found that increased knowledge of asthma was related to more appropriate self-management behaviors in less behaviorally adjusted children compared to better adjusted children in whom knowledge had a limited effect. Future research is needed to clarify the role of the family and psychosocial adjustment on adherence as well as the interaction between these variables.

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Psychological Correlates

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TREATMENT STRATEGIES

Treatment strategies to improve adherence in pediatric asthma have emerged from both clinical experience and clinical research. These strategies have been grouped into one of three categories: (a) educational, (b) organizational, or (c) behavioral (Weinstein, 1984). Specific treatment strategies within each category are described next. Educational Strategies Educational strategies have focused on providing verbal or written instructions to inform children and their parents about the nature of asthma and its management. Instructions have centered on giving families factual information about asthma and specific medications, explaining the importance of following recommendations as directed, advising families in advance about the negative side effects of medication, and reviewing all medications currently taking at each visit (Spector, 1985; Sublett et al., 1979). Unfortunately, educational strategies have been developed from clinical experience and have not been subjected to empirical investigation when used as a sole treatment approach. The effectiveness of these strategies has been evaluated, however, when combined with behavioral strategies in asthma selfmanagement programs. These data are reported on in a later section on asthma care programs. A related treatment strategy frequently advocated has been to increase family understanding and recall of verbal or written instructions through improved doctor/patient (parent) communication (e.g., Sublett et al., 1979). Specific methods recommended to improve this communication have included presenting the most important information first, repeating information with-

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In general, research attempting to identify specific factors that influence adherence has been fraught with several problems. For instance, identification of these factors has been based mainly on clinical descriptions, descriptive studies, or quasi-experiments. Although frequently appropriate, less powerful descriptive statistics have been chosen to analyze the association between specific factors and adherence. Selected independent and dependent variables have varied greatly across studies as well as the demographic characteristics of the sample. Finally, little, if any, attention has been directed toward assessment of change in adherence over time. One study (Smith et al., 1986) found no difference in reported adherence between the initial interview and 3- and 4-month follow-up sessions. However, this finding pertains more to the reliability of the measure and not directly to the stability of adherence.

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in and across appointments, requesting that families repeat what has been stated, and associating concrete tasks with general instructions (e.g., "take 3 puffs from inhaler right before gym class" instead of "use inhaler before exercise") (Schraa & Dirks, 1982; Spector, 1985). As with educational strategies utilized alone, the effectiveness of these recommendations in increasing adherence in pediatric asthma have not been evaluated within either uncontrolled or controlled studies.

Organizational strategies have emphasized clinic and regimen convenience as a method for promoting adherence. For instance, extended supervision by health care professionals may promote adherence through frequent follow-up appointments with the same clinician, short waiting times for appointments, and regular telephone contacts (Voyles-& Menendez, 1983). Minimizing the complexity of treatment by prescribing as few medications as possible, as few times per day as possible, and by dropping ineffective medications has been considered an extremely important treatment strategy (Spector, 1985; Voyles & Menendez, 1983). Results from two studies (Tabachnik et al., 1982; Tinkelman et al., 1980) support the use of twice-daily theophylline preparations (i.e., every 12 hr) versus short-acting preparations (i.e., every 4-6 hr) for effectiveness and ease/acceptance of administration. In addition, treatment complexity may be reduced by introducing medications one at a time from simplest to administer to most complex (Voyles & Menendez, 1983). With the exception of minimizing treatment complexity, the efficacy of organizational strategies as a single treatment approach has not been studied within randomized clinical trials. Behavioral Strategies A variety of behavioral strategies have shown positive effects on adherence in uncontrolled and controlled studies. Identification of visual reminders (e.g., medication calendars, charts, daily dispensers) along with convenient times (e.g., before and after school) have been proposed as a means of providing direct feedback on whether or not medications were taken correctly (Spector, 1985; Voyles & Menendez, 1983). Positive results have been obtained for experimental groups compared to control or comparison groups when combining behavioral strategies with either organizational strategies (Eney & Goldstein, 1976) or educational strategies (Smith et al., 1986). In their study, Eney and Goldstein (1976) incorporated physician monitoring of theophylline levels with directive and supervised drug administration.

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Organizational Strategies

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Asthma Care Programs A final treatment strategy has focused on teaching general and specific management skills to children and their parents within asthma care programs. Numerous programs have been developed that typically combine educational and behavioral strategies to teach management skills and to promote adherence. Currently, there are no less than eight different asthma care programs sponsored by such associations as the American Lung Association and the

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These strategies were evaluated in a group of 22 asthmatic children and adolescents in comparison to an initial group of 43 (ages 3 to 16 years) who had received no treatment. They reported an increase in adherence (i.e., percentage obtaining therapeutic theophylline levels) from 11% in the initial group to 42% in the treatment group. Smith et al. (1986) used a combination of written drug information, discussion and supervision of adherence, and tailoring drug regimens to fit families' daily routines. Even though the intervention took place during only one clinic appointment, significant differences between experimental and control subjects were found in terms of greater adherence to prescribed medication, better knowledge of asthma and medication, and increased satisfaction with the physician and with the regimen. A study by Weinstein and Cuskey (1985) illustrated the application of a series of behavioral strategies requiring greater physician and parent involvement; continuation in the series depended on detection of subtherapeutic levels of theophylline at each stage. The behavioral strategies consisted of telephone feedback and reminders of theophylline levels obtained, parental encouragement and support regarding asthma and its treatment, and tailoring drug regimens for younger children or increased supervision of medication through a written contract between older children/adolescents and parents with specified rewards and sanctions; exercise challenges, and, finally, stopping daily medication and prescribing PRN medication. Their results suggested that parental encouragement and increasing parental supervision of medication were the most effective behavioral strategies in achieving adherence. Although these strategies were effective in 50 and 46% of the families who received them, respectively, findings are limited by the absence of a control group. Finally, Baum and Creer (1986) contrasted the effects of self-monitoring with a combined treatment package (i.e., self-monitoring, education, and a token system for symptom monitoring) in two groups of eight children each and their parents. No group differences were obtained in medication adherence, but children in the combined treatment group performed skills taught in the education session to a greater extent.

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Table II. Facets of Selected Asthma Care Programs Program A.C.T. Open Airways Air Wise Group/children Group/children Individual/ Format and parents and parents children Length of 1 1 V*-V/i sessions (hr) 5 7 No. of sessions 4-6 2 + physician/ 2-3 1 + physician Leaders pharmacist 6-12 4-7/8-12 8-13 Age range (years)

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Asthma and Allergy Foundation of America. Examples of these programs include Asthma Care Training (A.C.T.) (Lewis et al., 1984), Open Airways (Clark et al., 1980), and Air Wise (McNabb, Wilson-Pessano, Hughes, & Scamagas, 1985). Topics generally covered by asthma care programs consist of physiological mechanisms underlying asthma, identification of symptoms and triggers, management of symptoms and attacks, and adjustment to living with asthma. Although the content of these programs are fairly similar, they differ in regard to a number of other facets. For instance, teaching sessions are held with either individual children, with groups of children, or with separate groups of children and their parents. The length of each teaching session varies (between Vi to 2 hr) as well as the total number of sessions (4 to 8 for nonresidential programs). In addition, diverse professionals serve as leaders of the sessions, such as health educators, pediatric nurse practitioners, physicians, psychologists, social workers, and elementary school teachers. Finally, the age requirements of individual programs differ, although most programs are designed for school-age children. Table II describes facets of the three asthma care programs mentioned above. Asthma care programs have been conducted in the classroom (Parcel et al., 1980), in residential treatment centers (Clark, Feldman, Evans, Wasilewski, & Levison, 1984; Richards, Church, Roberts, Newman, & Garon, 1981), in pediatric outpatient clinics (Lewis et al., 1984; Rubin et al., 1986), and in community settings (Hindi-Alexander & Cropp, 1984). Evaluations of the effectiveness of these programs have produced equivocal results using diverse dependent measures (e.g., utilization rates, medication adherence, psychosocial adjustment, school performance). For example, in a randomized control study of the A.C.T. program, Lewis et al. (1984) found significant changes in reported adherent behaviors and reductions in emergency room visits and days of hospitalization at 3, 6, and 12 months following the completion of the program, but equivalent increases in knowledge in the experimental and control groups. Parcel et a/.'s (1980) school-based

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SUMMARY AND CONCLUSIONS The number of studies on adherence in children with asthma has been growing. However, poor adherence to medical regimens remains a significant problem in this population. Difficulty in obtaining conclusive results has been due to several factors, including the variability of symptomatology and treatment effectiveness, problems inherent in individual assessment methods, and nonstandarized interventions. When considering these factors, it is not surprising that a range of adherence estimates have been reported. The need for continued research on various issues related to adherence and pediatric asthma is apparent. In general, much of the literature in this area has been based on clinical experience rather than randomized controlled studies. Well-controlled research evaluating the relationship between different methods of assessing

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education program resulted in improved knowledge related to asthma, increased perception of control over health, and decreased anxiety associated with illness in a group of 53 children versus a comparison group of 51; results were replicated for the comparison group following their participation in the program. Unfortunately, methodological problems have been inherent in most of the other outcome studies, including lack of true experimental design (e.g., Hindi-Alexander & Cropp, 1984) and absence of objective outcome measures (e.g., Richards et al., 1981). A related study by McNabb, Wilson-Pessano, and Jacobs (1986) suggested that self-management entails more than simple adherence to a treatment regimen. In this study 66 behaviors involved in the self-management of asthma in children were identified using the critical incidence technique. These behaviors were then classified into 21 categories, which fell into four general competency areas: (a) prevention, (b) intervention, (c) compensatory behaviors, and (d) external controlling factors. Behaviors in the area of prevention centered on ways to avoid asthma attacks (e.g., avoid allergens, take preventive medication), whereas behaviors in the intervention area focused on what to do after symptoms appear (e.g., use medication correctly, remain calm during attack). Compensatory behaviors emphasized adjustment to asthma, such as accepting primary responsibility for managing asthma and dealing with peers. Finally, external factors typically included family problems that hindered the child's ability to self-manage (e.g., denial of symptoms or disease). The concept that management consists of multiple components needs to be addressed in the future development and evaluation of asthma care programs. Additional controlled evaluation studies also are necessary to determine current programs' outcome on management skills and adherence.

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REFERENCES Aas, K. (1963). Prognosis for asthmatic children. Ada Paediatrica, 140, 87-88. American Lung Association. (1975). Introduction to lung diseases (6th ed.). New York: Author. Baum, D., & Creer, T. L. (1986). Medication compliance in children with asthma. Journal of Asthma, 23, 49-59. Becker, M. H., & Maiman, L. A. (1975). Sociobehavioral determinants of compliance with health and medical care recommendations. Medical Care, 13, 10-24. Becker, M. H., Radius, S. M., Rosenstock, I. M., Drachman, R. H., Schuberth, K. C, & Teets, K. (1978). Compliance with a medical regimen for asthma: A test of the Health Belief Model. Public Health Reports, 93, 268-277. Birkhead, G., Attaway, N. J., Strunk, R. C , Townsend, M. C , & Teutsch, S. (in press). Investigation of a cluster of deaths of adolescents from asthma: Evidence implicating inadequate treatment and poor patient adherence with medications. Journal of Allergy and Clinical Immunology. Chai, H. (1975). Management of severe chronic perennial asthma in children. Advances in Asthma and Allergy, 2, 1-12. Christiaanse, M. E., Lavigne, J. V., & Lerner, C. V. (1989). Psychosocial aspects of compliance in children and adolescents with asthma. Developmental and Behavioral Pediatrics, 10. 75-80. Chryssanthopoulos, C., Laufer, P., & Torphy, D. E. (1983). Assessment of acute asthma in the emergency room: Evaluation of compliance and combined drug therapy. Journal of Asthma, 20, 35-38. Clark, N. M., Feldman, C. H., Evans, D., Wasilewski, Y., & Levison, M. J. (1984). Changes in children's school performance as a result of education for family management of asthma. Journal of School Health, 54, 143-145. Clark, N. M., Feldman, C. H., Freudenberg, N., Millman, E. J., Wasilewski, Y., & Valle, I. (1980). Developing education for children with asthma through study of selfmanagement behavior. Health Education Quarterly, 7, 278-297.

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adherence should be a first step in determining the most accurate method for detecting nonadherence. In addition, the association between adherence and therapeutic outcome should be investigated for both daily medications and PRN medications once specific and agreed upon treatment goals have been defined. Efforts at delineating factors influencing adherence should be continued but, again, within controlled studies. Narrower age range of subjects, similar criteria of adherence, and multivariate statistics should be employed in future research. Areas of specific inquiry should focus on developmental, family, and individual difference variables. A final area of research that should receive priority is evaluation of effective treatment strategies to increase adherence. Studies using longer follow-up periods to document changes in adherence over time as well as treatment maintenance should be conducted. Assessment of the feasibility of implementing different treatment strategies in various clinics by diverse health care professionals also should be undertaken (Masek & Jankel, 1982). Advances in the area of adherence and pediatric asthma have been made but further research is required that differentiates inadequate medical management from nonadherence.

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Cluss, P. A., Epstein, L. H., Galvis, S. A., Fireman, P., & Friday, G. (1984). Effect of compliance for chronic asthmatic children. Journal of Consulting and Clinical Psychology, 52, 909-910. Creer, T. L. (1979). Asthma therapy: A behavioral health care system for respiratory disorders. New York: Springer. Creer, T. L., Renne, C. M., & Chai, H. (1982). The application of behavioral techniques to childhood asthma. In D. C. Russo & J. W. Varni (Eds.), Behavioral pediatrics: Research and practice (pp. 27-66). New York: Plenum Press. Creer, T. L., Weinberg, E., & Molk, L. (1974). Managing a problem hospital behavior: Malingering. Journal of Behavior Therapy and Experimental Psychiatry, 5, 259-262. Deaton, A. V. (1985). Adaptive noncompliance in pediatric asthma: The parent as expert. Journal of Pediatric Psychology, 10, 1-14. Dunbar, J. (1983). Compliance in pediatric populations: A review. In P. J. McGrath & P. Firestone (Eds.), Pediatric and adolescent behavioral medicine: Issues in treatment (pp. 210-230). New York: Springer. Eney, R. D., & Goldstein, E. O. (1976). Compliance of chronic asthmatics with oral administration of theophyUine as measured by serum and salivary levels. Pediatrics, 57, 513-517. Epstein, L. H., & Cluss, P. A. (1982). A behavioral medicine perspective on adherence to longterm medical regimens. Journal of Consulting and Clinical Psychology, 50, 950-971. Fritz, G. K., Rubinstein, S., & Lewiston, N. J. (1987). Psychological factors in fatal childhood asthma. American Jouranl of Orthopsychiatry, 57, 253-257. Gordis, L., Markowitz, M., & Lilienfeld, A. M. (1969). The inaccuracy in using interviews to estimate patient reliability in taking medications at home. Medical Care, 7, 49-52. Handi-Alexander, M. C , & Cropp, G. J. A. (1984). Evaluation of a family asthma program. Journal of Allergy and Clinical Immunology, 74, 505-510. Kapotes, C. (1977). Emotional factors in chronic asthma. Journal of Asthma Research, 15, 5-14. Kinsman, R. A., Dirks, J. F., & Dahlem, N. W. (1980). Noncompliance to prescribed as-needed (PRN) medication use in asthma: Usage patterns and patient characteristics. Journal of Psychosomatic Research, 24, 97-102. Kuzemko, J. A. (1980). Natural history of childhood asthma. Journal of Pediatrics, 97, 886-892. La Greca, A. M. (1988). Adherence to prescribed medical regimens. In D. K. Routh (Ed.), Handbook of pediatric psychology (pp. 299-320). New York: Guilford. Lewis, C. E., Rachelefsky, G., Lewis, M. A., de la Sota, A., & Kaplan, M. (1984). A randomized trial of A. C. T. (Asthma Care Training) for kids. Pediatrics, 74, 478-486. Litt, I. F., & Cuskey, W. R. (1980). Compliance with medical regimens during adolescence. Pediatric Clinics of North America, 27, 3-15. Masek, B. J., & Jankel, W. R. (1982). Therapeutic adherence. In D. C. Russo & J. W. Varni (Eds.), Behavioral pediatrics: Research and practice (pp. 375-395). New York: Plenum Press. McNabb.W. L., Wilson-Pessano, S. R., & Jacobs, A. M. (1986). Critical self-management competencies for children with asthma. Journal of Pediatric Psychology, 11, 103-117. McNabb, W. L., Wilson-Pessano, S. R., Hughes, G. W., & Scamagas, P. (1985, October). Self-management of asthma by children: AIR WISE. American Journal of Public Health, 75. Miller, K. A. (1982). TheophyUine compliance in adolescent patients with chronic asthma. Journal of Adolescent Health Care, 3, 177-179. National Institutes of Health. (1983). Asthma (DHHS Publication No. 83-525). Washington, DC: U.S. Government Printing Office. Parcel, G. S., Nader, P. R., &Tiernan, M. S. (1980). A health educational program for children with asthma. Journal of Developmental and Behavioral Pediatrics, 1, 128-132. Pearlman, D. S. (1984). Bronchial asthma: A perspective from childhood to adulthood. American Journal of Diseases in Children, 138, 459-466. Peckham, C , & Butler, N. (1978). A national study of asthma in childhood. Journal of Epidemiology and Community Health, 32, 79-85. Pedersen, S., & Moller-Petersen, J. (1984). Erratic absorption of a slow-release theophylline sprinkle product. Pediatrics, 74, 534-538.

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Rackemann, R., & Edwards, M. (1952). Asthma in children. New England Journal of Medicine, 246. 815-823, 858-863. Reed, C. E., &Townley, R. G. (1978). Asthma: Classification and pathogenesis. In E. Middleton, Jr., C. E. Reed, & E. F. Ellis (Eds.), Allergy: Principles and practice (pp. 659-677). St. Louis: Mosby. Richards, W., Church, J. A., Roberts, M. J., Newman, L. J., & Garon, M. R. (1981). A selfhelp program for childhood asthma in a residential treatment center. Clinical Pediatrics, 20, 453-457. Rubin, D. H., Bauman, L. J., & Lauby, J. L. (1989). The relationship between knowledge and reported behavior in childhood asthma. Journal of Developmental and Behavioral Pediatrics, 10, 307-312. Rubin, D. H., Leventhal, J. M., Sadock, R. T., Letovsky, E., Schottland, P., Clemente, I., & McCarthy, P . (1986). Educational intervention by computer in childhood asthma: A randomized clinical trial testing the use of a new teaching intervention in childhood asthma. Pediatrics, 77. 1-10. Rubinfeld, A. R., & Pain, M. C. F. (1976). Perception of asthma. Lancet, 1, 882-884. Rubinstein, S., Hindi, R. D., Moss, R. B., Blessing-Moore, J., & Lewiston, N. J. (1984). Sudden death in adolescent asthma. Annals of Allergy, 53, 311-318. Rylance, G. W., & Moreland, T. A. (1980). Drug level monitoring in pediatric practice. Archives of Disease in Childhood, 55, 89-98. Sackett, D. L., & Snow, J. C. (1979). The magnitude of compliance and noncompliance. In R. B. Haynes, D. W. Taylor, & D. L. Sackett (Eds.), Compliance in health care (pp. 11-22). Baltimore: John Hopkins University Press. Schraa, J. C , & Dirks, J. F. (1982). Improving patient recall and comprehension of the treatment regimen. Journal of Asthma, 19, 159-162. Sibbald, B. (1980). Extrinsic and intrinsic asthma: Influence of classification on family history of asthma and allergic disease. Clinical Allergy, 10, 313-318. Smith, N. A., Seale, J. P., Ley, P., Shaw, J., & Braes, P. U. (1986). Effects of intervention on medication compliance in children with asthma. Medical Journal of Australia, 144, 119-122. Smith, N. A., Seale, J. P., & Shaw, J. (1984). Medication compliance in children with asthma. Australian Paediatric Journal, 20, 47-51. Spector, S. L. (1985). Is your asthmatic patient really complying? Annals of Allergy, 55, 552-556. Strunk, R. C. (1987). Asthma deaths in childhood: Identification of patients at risk and intervention. Journal of Allergy and Clinical Immunology, 80, 472-477. Strunk, R. C , Mrazek, D. A., Fuhrmann, G. S. W., & LaBrecque, J. F. (1985). Deaths from asthma in childhood. Can they be predicted? Journal of the American Medical Association, 254, 1193-1198. Sublett, J. L., Pollard, S. J., Kadlec, G. J., & Karibo, J. M. (1979). Non-compliance in asthmatic children: A study of theophylline levels in a pediatric emergency room population. Annals of Allergy, 43, 95-97. Tabachnik, E., Scott, P., Correia, J., Isles, A., MacLeod, S., Newth, C, & Levison, H. (1982). Sustained-release theophylline: A significant advance in the treatment of childhood asthma. Journal of Pediatrics, 100, 489-492. Tinkelman, D. G., Vanderpool, G. E., Carroll, M. S., Page, E. G., & Spangler, D. L. (1980). Compliance differences following administration of theophylline at six- and twelve-hour intervals. Annals of Allergy, 44, 283-286. Townley, R. G., Bewtra, A. K., Nair, N. M., Brodkey, F. D., Watt, G. D., & Burke, K. M. (1979). Methacholine inhalation challenge studies. Journal of Allergy and Clinical Immunology, 64, 569-574. Vance, V. J., & Taylor, W. F. (1971). Status and trends in residential asthma homes in the United States. Annals of Allergy, 29, 428-437. Voyles, J. B., & Menendez, R. (1983). Role of patient compliance in the management of asthma. Journal of Asthma, 20, 411-418. Weinstein, A. G. (1984). Direction, motivation, and successful self-managment of asthma: Focus on drug compliance. Journal of Asthma, 21, 1-283.

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Adherence issues in the medical management of asthma.

Asthma is a common chronic illness of childhood that requires coordinated efforts by children, families, and health care professionals for proper medi...
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