asthma severity and child quality of life in pediatric asthma: a systematic review

7
Review Asthma severity and child quality of life in pediatric asthma: A systematic review § Robin S. Everhart a , Barbara H. Fiese b, * a Syracuse University, Department of Psychology, 430 Huntington Hall, Syracuse, NY 13244, United States b University of Illinois at Urbana-Champaign, Department of Human and Community Development, 1016B Doris Kelley Christopher Hall, MC-081, 904 West Nevada Street, Urbana, Illinois 61801, United States 1. Introduction Clinicians and researchers routinely use quality of life (QOL) as an indicator of treatment success in pediatric asthma. Measures of QOL are thought to indicate how much an individual’s illness interferes with daily life and how well the patient is adapting to his or her illness across several areas of functioning such as social, emotional, and physical [1]. Thus, QOL assessments are used to measure the effectiveness of medical treatments and other interventions in improving patient functioning and adaptation to a chronic illness [2]. Healthcare providers who treat children with asthma often utilize these outcome measures in their decisions about treatment planning and medication usage. However, the relationship between disease severity and child QOL in pediatric asthma is not well established. For example, symptoms of poorly controlled asthma such as wheezing and night-time waking, thought to disrupt daily and nightly activities, are not consistently associated with measurements of child QOL in some studies [3,4], whereas other studies report such relationships [5,6]. Thus, the overall aim of this review was to evaluate the degree to which asthma severity is a correlate of child QOL across several studies. In pediatric asthma, the lack of a consistent relationship between asthma severity and child QOL may be due to inconsistencies in the way in which asthma severity is measured (e.g., symptoms, limited activities, night waking and pulmonary function tests). As QOL is conceptualized as being comprised of patient functioning across several domains (e.g., physical, psychological and social), factors related to asthma severity should influence child QOL [7]. Yet, the inconsistent relationship between severity and QOL suggests that factors independent of physical indicators may instead influence child QOL [8]. It might also be that the relationship between severity and child QOL holds only under certain conditions or depending upon how severity is measured. For instance, asthma severity is often classified based on patient and/or caregiver retrospective recall of symptoms or according to physician judgment following published guidelines for asthma care [9]. There is little agreement among researchers as to which methods to use to classify asthma severity [10]. For instance, a researcher may utilize the guidelines from National Heart, Lung and Blood Institute (NHLBI) or guidelines from the National Asthma Education and Prevention Program (NAEPP) in determining severity. Guidelines from the NHLBI rely on several variables for classifying asthma Patient Education and Counseling 75 (2009) 162–168 ARTICLE INFO Article history: Received 16 May 2008 Received in revised form 18 August 2008 Accepted 6 October 2008 Keywords: Asthma Severity Pediatric Quality of life ABSTRACT Objective: To systematically review evidence of asthma severity as a correlate of child quality of life (QOL) in pediatric asthma. Methods: Online bibliographic databases (PsycINFO, PsycARTICLES, and MEDLINE) were used to identify relevant studies that specifically considered the relationship between asthma severity and child QOL. Results: Fourteen studies matching inclusion and exclusion criteria were reviewed. Asthma severity was significantly related to child QOL in nine of these studies. Informant of QOL and type of QOL measure were found to influence the strength of the relationship between severity and child QOL in pediatric asthma. Conclusions: Findings suggest that asthma severity is a correlate of child QOL. Children whose asthma symptoms are not well-managed are likely to experience an impaired level of QOL. Findings also suggest the need to utilize asthma-specific QOL measures and an informant of QOL other than the child’s parent in order to receive the most accurate information about the child’s level of functioning. Practice implications: Researchers and healthcare providers basing clinical outcomes on QOL assessments should consider asthma severity in their evaluations. Further, researchers and healthcare providers should recognize the continued need to reduce asthma severity and improve asthma symptom control in their attempts to improve the QOL of children with asthma. ß 2008 Elsevier Ireland Ltd. All rights reserved. § Preparation of this manuscript was supported, in part, by a grant from the National Institute of Mental Health (R01 MH51771) to the second author. * Corresponding author. Tel.: +1 217 333 3790; fax: +1 217 333 9061. E-mail address: bhfi[email protected] (B.H. Fiese). Contents lists available at ScienceDirect Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou 0738-3991/$ – see front matter ß 2008 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2008.10.001

Upload: robin-s-everhart

Post on 21-Jun-2016

215 views

Category:

Documents


1 download

TRANSCRIPT

Page 1: Asthma severity and child quality of life in pediatric asthma: A systematic review

Review

Asthma severity and child quality of life in pediatric asthma: A systematic review§

Robin S. Everhart a, Barbara H. Fiese b,*a Syracuse University, Department of Psychology, 430 Huntington Hall, Syracuse, NY 13244, United Statesb University of Illinois at Urbana-Champaign, Department of Human and Community Development, 1016B Doris Kelley Christopher Hall, MC-081,

904 West Nevada Street, Urbana, Illinois 61801, United States

Patient Education and Counseling 75 (2009) 162–168

A R T I C L E I N F O

Article history:

Received 16 May 2008

Received in revised form 18 August 2008

Accepted 6 October 2008

Keywords:

Asthma

Severity

Pediatric

Quality of life

A B S T R A C T

Objective: To systematically review evidence of asthma severity as a correlate of child quality of life (QOL)

in pediatric asthma.

Methods: Online bibliographic databases (PsycINFO, PsycARTICLES, and MEDLINE) were used to identify

relevant studies that specifically considered the relationship between asthma severity and child QOL.

Results: Fourteen studies matching inclusion and exclusion criteria were reviewed. Asthma severity was

significantly related to child QOL in nine of these studies. Informant of QOL and type of QOL measure were

found to influence the strength of the relationship between severity and child QOL in pediatric asthma.

Conclusions: Findings suggest that asthma severity is a correlate of child QOL. Children whose asthma

symptoms are not well-managed are likely to experience an impaired level of QOL. Findings also suggest

the need to utilize asthma-specific QOL measures and an informant of QOL other than the child’s parent in

order to receive the most accurate information about the child’s level of functioning.

Practice implications: Researchers and healthcare providers basing clinical outcomes on QOL assessments

should consider asthma severity in their evaluations. Further, researchers and healthcare providers

should recognize the continued need to reduce asthma severity and improve asthma symptom control in

their attempts to improve the QOL of children with asthma.

� 2008 Elsevier Ireland Ltd. All rights reserved.

Contents lists available at ScienceDirect

Patient Education and Counseling

journa l homepage: www.e lsev ier .com/ locate /pateducou

1. Introduction

Clinicians and researchers routinely use quality of life (QOL) as anindicator of treatment success in pediatric asthma. Measures of QOLare thought to indicate how much an individual’s illness interfereswith daily life and how well the patient is adapting to his or herillness across several areas of functioning such as social, emotional,and physical [1]. Thus, QOL assessments are used to measure theeffectiveness of medical treatments and other interventions inimproving patient functioning and adaptation to a chronic illness[2]. Healthcare providers who treat children with asthma oftenutilize these outcome measures in their decisions about treatmentplanning and medication usage. However, the relationship betweendisease severity and child QOL in pediatric asthma is not wellestablished. For example, symptoms of poorly controlled asthmasuch as wheezing and night-time waking, thought to disruptdaily and nightly activities, are not consistently associated withmeasurements of child QOL in some studies [3,4], whereas other

§ Preparation of this manuscript was supported, in part, by a grant from the

National Institute of Mental Health (R01 MH51771) to the second author.* Corresponding author. Tel.: +1 217 333 3790; fax: +1 217 333 9061.

E-mail address: [email protected] (B.H. Fiese).

0738-3991/$ – see front matter � 2008 Elsevier Ireland Ltd. All rights reserved.

doi:10.1016/j.pec.2008.10.001

studies report such relationships [5,6]. Thus, the overall aim of thisreview was to evaluate the degree to which asthma severity is acorrelate of child QOL across several studies.

In pediatric asthma, the lack of a consistent relationship betweenasthma severity and child QOL may be due to inconsistencies in theway in which asthma severity is measured (e.g., symptoms, limitedactivities, night waking and pulmonary function tests). As QOL isconceptualized as being comprised of patient functioning acrossseveral domains (e.g., physical, psychological and social), factorsrelated to asthma severity should influence child QOL [7]. Yet, theinconsistent relationship between severity and QOL suggests thatfactors independent of physical indicators may instead influencechild QOL [8]. It might also be that the relationship between severityand child QOL holds only under certain conditions or dependingupon how severity is measured. For instance, asthma severity isoften classified based on patient and/or caregiver retrospectiverecall of symptoms or according to physician judgment followingpublished guidelines for asthma care [9].

There is little agreement among researchers as to which methodsto use to classify asthma severity [10]. For instance, a researcher mayutilize the guidelines from National Heart, Lung and Blood Institute(NHLBI) or guidelines from the National Asthma Education andPrevention Program (NAEPP) in determining severity. Guidelinesfrom the NHLBI rely on several variables for classifying asthma

Page 2: Asthma severity and child quality of life in pediatric asthma: A systematic review

Table 1Description of studies included in review.

Study n Child age Disease severity Race/ethnicity Classification of asthma

severity

QOL measure QOL informant Significant

relationship?

Annett et al. [20] 339 5–12 years 36.8% mild, 63.2% moderate 63.8% Caucasian, 8.5%

African-American, 17.1%

Hispanic, 6.2% other

Parent report of

information

PAQLQ (asthma-specific) Child No

Chan et al. [21] 463 2–18 years Mild intermittent to severe 24% Caucasian, 27%

Hispanic, 29% African-

American, 20% other

NHLBI guidelines PedsQL 4.0 SF15 (generic) Parent if

child < than 12

years

Yes

PedsQL 3.0 SF22 Parent if child

less than 12

years

Yes

Asthma Module (asthma-

specific)

Erickson et al. [4] 99 9–17 years Mild intermittent to severe 40.4% Caucasian, 59.6%

African-American

Parent/child report of

information

PAQLQ (asthma-specific) Child No

Medication usage based on

NHLBI guidelines

No

Flapper et al. [22] 289 8–16 years Mild intermittent to severe Not reported (Dutch

sample)

Dutch medical guidelines PAQLQ (asthma-specific) Child Yes

TACQOL (asthma-specific) Child Yes

Parent Yes

Goldbeck et al. [23] 81 7–18 years 45% mild, 55% severe Not reported (German

sample)

GINA classification Ulm Inventory for Children

(generic)

Child No

Gorelick et al. [24] 121 2–17 years 24% mild intermittent,

29.3% mild persistent,

26.7% moderate persistent,

20% severe

63.4% Caucasian, 28.5%

African-American, 4.9%

Latino, 3.2% other

NHLBI guidelines ITG-CASF (asthma-specific) Parent Yes

Horner et al. [25] 94 6–12 years 37% mild intermittent, 40%

mild persistent, 11%

moderate, 12% severe

24% African-American, 27%

Caucasian, 49% Hispanic

Parent report of

information

PAQLQ (asthma-specific) Child Yes

Kwok et al. [26] 750 < 18 years 55% mild intermittent, 21%

mild persistent, 14%

moderate, 24.5% severe

55% African-American, 30%

Caucasian, 8% Hispanic

NAEPP guidelines ITG-CASF (asthma-specific) Parent Yes

Montalto et al. [27] 238 8–16 years 41% mild asthma, 25% high

service utilizers, 11%

limited functioning, 24%

high service utilization and

limited functioning

44% Puerto Rican, 19% other

Latino/a, 27% African-

American, 3% Caucasian, 4%

other

Parent report of

information

KINDL (generic) Child No

Sawyer et al. [8] 236 8–13 years 58% mild, 42% moderate/

severe

Not reported (Australian

sample)

Parent report of

information

CHQ, CF-87 (generic) Child Yes

CHQ, PF-50 (generic) Parent Yes

PAQLQ (asthma-specific) Child Yes

Van De Ven et al. [28] 553 12–16

years

Not reported Not reported (Dutch

sample)

Child report of information AAQOL (asthma-specific) Child Yes

Vila et al. [3] 100 12–19

years

6% mild, 59% moderate, 35%

severe

Not reported (French

sample)

NHLBI guidelines PAQLQ (asthma-specific) Child No

Warsch-burger et al. [29] 318 8–16 years 14.5% mild intermittent,

24.2% mild persistent,

40.9% moderate, 20.4%

severe

Not reported (German

sample)

Medication usage based on

German Asthma Guidelines

PAQLQ (modified with 5-item

response scale)

Child Yes

Williams et al. [30] 240 5–12 years Not reported 99.6% African-American Parent report of

information

PAQLQ (modified with removal

of cold-weather items)

Parent Yes

R.S.

Ev

erha

rt,B

.H.

Fiese/P

atien

tE

du

catio

na

nd

Co

un

seling

75

(20

09

)1

62

–1

68

16

3

Page 3: Asthma severity and child quality of life in pediatric asthma: A systematic review

R.S. Everhart, B.H. Fiese / Patient Education and Counseling 75 (2009) 162–168164

severity: medication usage, lung function, symptoms, symptominterference with normal activities, and night-time waking [11]. TheNAEPP, which is an initiative of the NHLBI, utilizes three techniquesfor classifying severity: frequency of asthma symptoms during theday, frequency of nighttime asthma symptoms, and measures ofpulmonary function [11]. Still other researchers might rely on othernational guidelines depending on the location of their study (e.g., theBritish Guidelines on the Management of Asthma). Ortega et al. [12]speculate that there is such a variety of ways to classify asthmaseverity, in part, because health professionals are unsure of whichfactors should be utilized to evaluate asthma severity. Thus, inassessing the relationship between asthma severity and child QOL,this review considered how classification of asthma severity mightinfluence this relationship.

Based on previous reviews evaluating the psychometricproperties of QOL measures in pediatric populations [13–18], thisreview also considered type of QOL measure (e.g., generic vs.disease-specific) and informant (e.g., parent vs. child) in therelationships between asthma severity and child QOL. For instance,generic QOL measures are used to measure multiple domains offunctioning related to QOL and can be used with healthy and illpopulations [15]. Disease-specific measures report on a person’sQOL as it relates specifically to a certain medical condition. Genericmeasures, therefore, allow for comparisons across diseases andbetween healthy and ill individuals. Disease-specific measures donot have such flexibility, but are considered more sensitive toclinical changes [15]. With respect to informant choice, it is oftensuggested that based on the cognitive and emotional developmentof children, young children are not able to accurately report ontheir current level of QOL [7,14]. To combat such issues related tochild report, certain QOL measures are designed for completion bythe child’s parents. However, this methodology is also cause forconcern in that parent report of child QOL is likely to be influencedby parental biases and expectations [14]. Parent report can alsoobscure the accuracy of a child’s symptoms or functioning if theparent is emotionally distressed [3]. In fact, the results of a parent-completed child QOL measure may be quite different from thechild’s actual experience with his or her illness.

Therefore, in assessing asthma severity as a correlate of childQOL, our review had three goals. First, we aimed to examine whetherclassification of asthma severity influenced the relationshipbetween asthma severity and child QOL. We identified three waysthat asthma severity was classified in our studies: (1) from parent orchild report of asthma symptoms, (2) published guidelines and (3)medication usage criteria from published guidelines. Second, wesought to determine whether the type of QOL instrument utilized(e.g., generic vs. disease-specific) influenced the strength of thisrelationship. Finally, we considered whether informant of child QOL(e.g., child vs. parent) altered the strength of the relationshipbetween asthma severity and child QOL in pediatric asthma.

2. Method

2.1. Study selection

Online bibliographic databases (PsycINFO, PsycARTICLES, andMEDLINE) were searched using numerous combinations of thefollowing keywords: child, children, adolescent, pediatric, chronic

illness, quality of life, QOL, asthma and severity. As QOL literature inpediatric asthma is relatively recent and has been at the forefront ofQOL research since the introduction of Juniper et al.’s [19] popularmeasure, the Pediatric Asthma Quality of Life Questionnaire(PAQLQ), little research prior to 1996 has been conducted utilizingchild QOL as an outcome. However, no restrictions on dates wereutilized during online bibliographic searches. In addition to using

online databases, ancestry methods using authors’ names wereutilized, as well as checking the references of articles garnered fromthe literature searches using the aforementioned keywords. Non-English articles, unpublished manuscripts, book chapters, anddissertations were not included in this review.

2.2. Study inclusion and exclusion criteria

Studies were included if they met the following criteria: (1)included asthma severity as a correlate of child QOL, (2) included ameasure of child QOL as an outcome variable, and (3) considered therelationship between asthma severity and child QOL in pediatricasthma. Thus, studies that did not specifically consider the relation-ship between asthma severity and child QOL in pediatric asthmawere excluded from our review. Studies using a measure of healthstatus or functional status as a proxy measure of QOL were alsoexcluded based on recommendations by previous reviews that thesemeasures are not truly measures of QOL [14,16]. Fourteen studiesmet criteria and were included in this review (see Table 1).

3. Results

3.1. Asthma severity and child QOL

Across the fourteen studies [3,4,8,20–30], children ranged in agefrom 2 to 18 years and exhibited mild to severe asthma. As nine ofthese studies [8,21,22,24–26,28–30] found a significant associationbetween asthma severity and child QOL, there is evidence to supportasthma severity as a correlate of child QOL in pediatric asthma.Twelve studies [3,4,8,20–22,24–26,28–30] utilized asthma-specificQOL measures and four studies [8,21,23,27] used generic QOLmeasures. Parents were used as the informant of child QOL in five ofthese studies [8,22,24,26,30], with another study [21] utilizingparent report if the child was less than 12 years of age.

Finally, seven studies [4,8,20,25,27,28,30] defined asthmaseverity according to parent or child report of asthma symptomsand six studies [3,21–24,26] used published guidelines (e.g., NHLBIand NAEPP) to classify asthma severity. Two studies [4,29]considered only the medication usage criteria from publishedguidelines to classify severity. Overall, the greatest number ofstudies reporting a significant relationship between asthma severityand child QOL was found when severity was based on parent/childreport of information or when published guidelines were used toclassify severity level.

3.2. Classification of asthma severity

3.2.1. Parent/child report of asthma symptoms

When asthma severity was based on parent or child report ofasthma symptoms, four of seven studies [8,25,28,30] foundsignificant relationships between asthma severity and child QOL.In the study by Sawyer et al. [8], severity was determined fromparent report of the frequency and intensity of asthma symptoms onthe Asthma Severity Index (ASI). Asthma severity was based onestablished cut-offs (e.g., mild = wheezing less than monthly,severe = wheezing several times a week, etc.). Children withmoderate or severe asthma reported lower scores on the PAQLQand generic Child Health Questionnaire (CHQ) as compared tochildren with mild asthma. Williams et al. [30] determined asthmaseverity from parent report of child symptoms including wheezing,nocturnal and early morning symptoms, and speaking during anasthma attack. The researchers maintained this asthma severityscore as a continuous variable and did not categorize children basedon severity. Higher scores on the modified PAQLQ (i.e., cold weatheractivity items were removed due to the geographic location of the

Page 4: Asthma severity and child quality of life in pediatric asthma: A systematic review

R.S. Everhart, B.H. Fiese / Patient Education and Counseling 75 (2009) 162–168 165

study) were significantly correlated with lower asthma severityscores.

Van De Ven et al. [28] determined asthma severity by childreport of how often the child suffered from specific asthmasymptoms (e.g., night waking and trouble breathing) on a three-point scale (never, sometimes and a lot). Reponses to each itemwere averaged to determine a severity score with higher scoresindicating more severe asthma. Asthma severity was significantlyrelated to the asthma-specific Adolescent Asthma Quality of LifeQuestionnaire (AAQOL). Horner et al. [25] determined asthmaseverity using the Severity of Chronic Asthma (SCA) scale. Parentsresponded to 3 items about the frequency of daytime asthmasymptoms, frequency of nights with sleep disturbance due toasthma, and days limited by asthma. In evaluating the relationshipbetween asthma severity and QOL, asthma severity was main-tained as a continuous variable. Scores on the SCA and scores on thePAQLQ were significantly correlated.

On the other hand, three studies [4,20,27] did not find arelationship between asthma severity, as determined from parentor child report of information, and child QOL. In the study byAnnett et al. [20], severity was determined from previous asthmatreatments, asthma symptoms, and asthma medication history. Nosignificant differences were reported among severity levels andscores on the PAQLQ. Also using the PAQLQ, Erickson et al. [4] didnot find a significant relationship between severity and QOL.Asthma severity was classified by parent and child report ofwhether the child’s asthma was mild, moderate, or severe. Parentsrated their child’s asthma more often in the moderate to severerange than the child with asthma, who rated severity as mild tomoderate. However, neither child nor parent report of severity wasa significant predictor of child QOL. Finally, in the study byMontalto et al. [27], children were divided into four severitysubgroups based on parent response to questions about asthmasymptoms. No main effect for severity on QOL as measured by thegeneric KINDL measure was reported.

3.2.2. Published guidelines

Four of six studies [21,22,24,26] that classified asthma severityfrom published guidelines found significant associations betweenasthma severity and child QOL. Gorelick et al. [24] used NHLBIguidelines based on parent report of daytime symptoms, nighttimesymptoms, and activity-limiting exacerbations to determine asthmaseverity. Significant differences in child QOL as measured by parent-report on the Integrated Therapeutics Group Child Asthma ShortForm (ITG-CASF) were reported across severity groups. QOL scoreswere highest among children with mild intermittent asthma andlowest among those with severe persistent asthma. Flapper et al.[22] had a pediatrician unfamiliar with the child’s case classify thechild’s asthma based on frequency of asthma symptoms and childresponse to medications according to Dutch medical guidelines.Scores on the PAQLQ differed by severity level, as did scores on boththe child and parent reported TNO-AZL Children’s Quality of Life-Asthma (TACQOL) measure.

In the study by Kwok et al. [26], investigators classified asthmaseverity using the symptom-based NAEPP guidelines based onparent report of activity limitations, daytime symptoms, andnighttime symptoms. ITG-CASF scores decreased with increasingasthma severity. Chan et al. [21] based asthma severity on the NHLBIguidelines and classified severity subgroups based on asthmasymptoms. Moderate and severe persistent subgroups were com-bined into one moderate/severe persistent group. Chan et al. [21]found that scores on both measures of child QOL (asthma-specificand generic) were improved as severity level decreased.

In contrast, the studies by Vila et al. [3] and Goldbeck et al. [23]did not find significant relationships between asthma severity and

child QOL. Vila et al. [3] classified children as having mild to severeasthma based on the presence of clinical features and the use ofdaily medication, as outlined by NHLBI guidelines. Asthma severitywas not significantly related to scores on the PAQLQ. Similarly,Goldbeck et al. [23] did not find a significant relationship betweenchild QOL, as measured by the generic Ulm inventory, and asthmaseverity. In this study, asthma severity was determined by aphysician according to the Global Initiative for Asthma (GINAclassification), which classifies children into severity groups basedon the frequency of asthma symptoms, type of asthma medication,and response to asthma medication.

3.2.3. Guidelines using only medication

One of the two studies [29] using only medication usage toclassify asthma severity found a significant association betweenseverity and child QOL. Asthma severity was determined bymedication usage according to the German Asthma Guidelines. Amedical expert classified the child’s asthma as mild intermittent,mild persistent, moderate, or severe based on parent report ofmedication use. Warschburger et al. [29] reported a significantmain effect of disease severity on a modified version of the PAQLQ.This version of the PAQLQ was modified from the usual 7-itemresponse scale to only a 5-item response scale. On the other hand,Erickson et al. [4] did not find a significant relationship betweenasthma severity and the PAQLQ. Asthma severity was determinedfrom prescribed medication type and dosage using the NHLBIguidelines. Although parents reported the medication type anddosage, study investigators confirmed these reports by reviewingpatient charts.

3.2.4. Summary

Findings from these studies suggest little evidence for measure-ment of asthma severity as influencing the relationship betweenseverity and child QOL. Slightly more studies found a significantrelationship when severity was based on parent/child report ofinformation or when published guidelines were used as compared tostudies that did not find a significant relationship in either category.There were not enough studies classifying asthma severity frommedication usage to determine whether this measure of severitymoderates the relationship between asthma severity and child QOL.Further, it does not appear that the specific published guidelineutilized to classify severity (e.g., NHLBI or GINA) influenced therelationship between asthma severity and child QOL.

3.3. Type of QOL measure

Of the studies using asthma-specific measures, eight studies[8,21,22,24–26,29,30], found significant relationships betweenseverity and child QOL whereas four studies [3,4,20,28] did not. Ofthe four studies using a generic measure of QOL, two studies [8,21]found a significant association between severity and child QOL.Thus, there was evidence to support that type of QOL measure (e.g.,asthma-specific vs. generic) influences the relationship betweenasthma severity and child QOL. A significant association betweenasthma-specific measures of QOL and asthma severity was morelikely than a significant relationship between generic measures ofQOL and asthma severity.

3.4. Informant of QOL

Five studies [8,22,24,26,30] used parents as the informant ofchild QOL. One study [21] had parents report on the child’s QOL ifthe child was less than 12 years of age (mean age of group was 12years). Perhaps not surprisingly, all six studies found significantrelationships between child QOL and asthma severity when the

Page 5: Asthma severity and child quality of life in pediatric asthma: A systematic review

R.S. Everhart, B.H. Fiese / Patient Education and Counseling 75 (2009) 162–168166

parent reported on both the child’s QOL and asthma severity. Thisevidence supports parent informant of QOL as a moderator in therelationship between child QOL and asthma severity (when alsoreported on by the parent).

4. Discussion and conclusion

4.1. Discussion

Current evidence from this review of 14 studies found strongsupport for asthma severity as a significant correlate of child QOLin pediatric asthma. Overall, the reviewed studies found that as theseverity of the child’s asthma worsened, the QOL of the childdeclined. This is consistent with the inverse relationship betweenseverity and QOL found in a review considering the relationshipbetween asthma severity and QOL among adults with asthma [31].As QOL is thought of as a measure of patient adaptation to anillness, this inverse relationship may exist due to the impact thatpoorly controlled asthma has on a child’s daily life. For instance,the child may be unable to participate in activities during recess,may be worried about experiencing an asthma attack, or may beunable to complete schoolwork because of asthma symptoms [32].Thus, a child whose asthma symptoms are not well controlledmight experience greater impairment in QOL. Further, the child’sasthma symptoms may be poorly controlled due to the inability ofthe family to effectively manage and cope with the child’s illness.Families may run out of resources to cope with the demands ofcaring for a child with asthma and, in turn, may experiencepsychological or physical distress [33]. Such families are at risk formismanaging their child’s illness, which can lead to an increase inasthma symptoms and decrease in QOL for the child [34].

Moreover, as Schmier et al. [31] found, the strength of therelationship between severity and child QOL was dependent uponseveral variables including type of QOL measure and QOLinformant. We found little evidence for classification of asthmaseverity as influencing the strength of the relationship betweenasthma severity and child QOL. In our review, utilizing an asthma-specific QOL measure resulted in more significant findingsbetween severity and QOL, as did the use of the child’s parentas the informant of QOL. This suggests that researchers might wantto rely exclusively on asthma-specific QOL measures instead ofgeneric measures of QOL when considering the relationshipbetween asthma severity and child QOL [18]. Doing so wouldenable a researcher to more reliably capture the impact of severityon child QOL.

On the other hand, it appears that researchers may want toutilize an informant other than the child’s parent or use aninformant in conjunction with parent report of child QOL whenassessing the impact of severity on child QOL. In this review, thosestudies that relied on the parent as the informant of child QOLfound a significant association between asthma severity and childQOL [8,21,22,24,26,30]. As the parent was also reporting on thechild’s symptoms, medication usage, and activity restrictions,which were then used to classify asthma severity, it is difficult todetermine how much of the relationship between severity andchild QOL was based on method bias. For instance, the parent’sreport of child QOL may have been biased by parental perceptionsrelated to the child’s illness [7]. Further, many of the items on QOLmeasures are similar to items used on questionnaires to measureasthma severity. For instance, questionnaires used to classifyseverity typically inquire about the child’s night-time waking dueto asthma symptoms and how many days the child missed schoolor was limited in his or her activities due to asthma [35]. Suchquestions are also found on child QOL measures to capture howmuch the child’s asthma interferes with daily life [19]. Thus, it may

be that associations between parent report of severity informationand child QOL are primarily due to these overlapping items.

One way to eliminate such potential biases would be to rely onobjective measures of asthma severity. It was somewhat surprisingthat of the 14 studies assessing the relationship between asthmaseverity and child QOL, not a single study relied on an objectivemeasure of severity, such as a pulmonary function test. In fact, theincorporation of a pulmonary function test in determining severityis strongly encouraged by the NHLBI and NAEPP guidelines [11].However, it is important to recognize that objective measures ofasthma severity are not without limitations as they are ofteninfluenced by adherence to medications and seasonal variations[9]. Using objective measures of asthma severity, however, is oneway for future researchers to improve upon the current researchassessing asthma severity as a correlate of child QOL. Doing sowould also enable researchers and healthcare providers to moreprecisely determine which measures of asthma severity are relatedto child QOL in pediatric asthma.

In comparing studies that found a significant relationshipbetween asthma severity and child QOL to those studies that didnot, it is important to note that the racial/ethnic composition of thesamples differed. For instance, in those studies assessing therelationship between severity based on published guidelines andchild QOL, a significant relationship between the two constructs wasfound in those studies that included minority children. Chan et al.[21] and Kwok et al. [26] utilized samples that were at most 30%Caucasian and reported that child QOL decreased as level of severityincreased. Although this is a small number of samples from which todraw any conclusions, such a finding suggests the possibility ofconsidering this area for future research. Using published guidelinesto classify asthma severity in diverse samples may be better able tocapture the relationship between severity and child QOL than otherclassification techniques. For instance, as minority children are morelikely to utilize emergency departments than Caucasian children[36], diverse samples may be recruited more often from medicalsites than non-medical sites, such as schools. Thus, researchconsidering asthma severity among diverse groups should considerclassifying severity based on published medical guidelines that relyon symptoms and medication usage. In this review, several diversesamples [4,27] classified asthma severity from parent/child report ofinformation and did not find a significant relationship betweenseverity and child QOL. It would be important to determine if usingpublished guidelines to classify severity would change thesignificance of the relationship in these studies. Knowing whetherone method of severity classification over another is more likely toresult in an association with child QOL in certain subgroups mightbetter enable healthcare providers to gauge the effectiveness ofasthma treatments for those subgroups.

Overall, the studies included in this review were correlationaland based on retrospective reports of QOL. Although the studiesreviewed conceptualized QOL as an outcome, it is difficult toascertain any directionality between child QOL and asthmaseverity from correlational designs. For instance, it is quitepossible that child QOL is impacting the child’s asthma severity.It might be that a child experiencing an impaired level of QOL isunable or unwilling to take his or her medication as prescribed,thus leading to an exacerbation of asthma symptoms. One way forfuture research to investigate this issue of directionality would beto incorporate longitudinal and prospective designs in their studieson child QOL in pediatric asthma. For instance, longitudinal studiescould be used to determine if improvements in severity based onsymptom report result in subsequent changes in child QOL.Further, prospective designs would enable researchers andclinicians to predict what the consequences of poor QOL are forchildren with asthma. It might be that the consequences do include

Page 6: Asthma severity and child quality of life in pediatric asthma: A systematic review

R.S. Everhart, B.H. Fiese / Patient Education and Counseling 75 (2009) 162–168 167

a worsening of asthma symptoms or a greater number of activityrestrictions.

Future studies considering the relationship between asthmaseverity and child QOL in pediatric asthma should also focus onwhether the nature of this relationship is linear or non-linear. It ispossible that children may experience one asthma symptom withrelatively little impact on QOL. Recent research suggests that forcaregivers, a pile up of stressors may affect QOL such that multiplerisk factors unduly compromise QOL [37]. The same pattern mayhold here where a dramatic worsening of QOL occurs as severitylevel increases. Findings from this review suggest that children withmore severe asthma are at greater risk for poorer QOL. Interventionsto improve QOL might then begin to focus on families with a childwho is likely to experience such a dramatic decline in QOL [38].

Finally, we suggest that future studies considering the relation-ship between asthma severity and child QOL in pediatric asthmainclude more statistical detail so that effect sizes can be determined.Unfortunately, the inconsistent reporting of statistics among mostof the included studies precluded the possibility of accuratelydefining effect size statistics for all studies in this review. Being ableto consider the magnitude of the relationship between severityand child QOL would certainly be useful in future reviews of thecorrelates of child QOL.

4.2. Conclusion

Findings from this review suggest researchers should rely solelyon asthma-specific QOL measures when evaluating the relation-ship between asthma severity and child QOL. Researchers shouldalso consider using an informant of child QOL other than the child’sparent if other parent report measures are being used in theirstudies. Ideally, researchers should use objective measures ofseverity to eliminate issues related to method and item bias.However, perhaps one of the largest gaps in the literature revealedfrom this review was the lack of attention to ethnically and raciallydiverse samples. Research focused on diverse groups of childrenwith asthma would increase our knowledge of the associationbetween asthma severity and child QOL in populations of childrenperhaps most at risk for an impaired QOL. In fact, it is rathersurprising that little attention has been focused on racial andethnic minorities with asthma given that these groups are often athigher risk for poor outcomes [34,36]. Ultimately, knowledgeabout asthma severity as a correlate of child QOL in these groups ofchildren would inform effective and efficient interventions toprevent detriments in QOL among children from diverse families.

4.3. Practice implications

As the number of studies included in this review was relativelysmall, only tentative recommendations can be made regarding theintegration of this review’s findings into practice.

However, findings from this review suggest first and foremostthat researchers and healthcare providers should not overlookthe importance that asthma severity may play in impacting achild’s QOL. This is especially important in evaluations oftreatment outcomes in pediatric asthma. Researchers and health-care providers should not evaluate treatment outcomes that useQOL assessments without considering the child’s level of asthmaseverity. Findings from this review also suggest the continued needto implement interventions aimed at reducing asthma severity andimproving asthma symptom control. Such interventions wouldlikely serve to improve the QOL of children with asthma andimprove their daily experiences with the disease. Researchers andhealthcare providers might consider focusing on families with achild who has recently received an asthma diagnosis and working

to reduce caregiver stress and burden related to the dailymanagement of asthma. This would enable the family to bettercope with the child’s diagnosis and begin effectively managingasthma symptoms at diagnosis. In turn, the child would likelyexperience improvements in QOL as the family learns more aboutasthma and techniques for improving adherence.

Finally, findings from this review also have important implica-tions in terms of patient education. Healthcare providers shouldconsider educating families with a child with asthma about therelationship between asthma severity and QOL. Specifically, familiesshould be made aware that improvements in asthma control mightlead to their child experiencing a better overall QOL. Knowledge thatbetter controlled symptoms may lead to a good night’s sleep orgreater ease in participating in school activities may motivatepatients to adhere to prescribed protocols. Further, a discussion ofthe relationship between severity and QOL might serve as a way toimprove communication between healthcare providers and familieswith a child with asthma. These discussions might also be used inevaluating the delivery of patient education, health promotionservices, and training models aimed at improving patient-providercommunication.

Conflicts of interest

We have no conflicts of interest to declare.

References

[1] Levi R, Drotar D. Critical issues and needs in health-related quality of lifeassessment in children and adolescents with chronic health conditions. In:Drotar D, editor. Measuring health-related quality of life in children andadolescents: implications for research and practice. Mahwah, NJ: LawrenceErlbaum Associates; 1998. p. 3–24.

[2] Naar-King S, Ellis DA, Frey MA. Assessing children’s well-being: a handbook ofmeasures. Mahwah, NJ: Lawrence Erlbaum Associates; 2004.

[3] Vila G, Hayder R, Bertrand C, Falissard B, de Blic J, Mouren-Simeoni MC,Scheinmann P. Psychopathology and quality of life for adolescents withasthma and their parents. Psychosomatics 2003;44:319–28.

[4] Erickson SR, Munzenberger PJ, Plante MJ, Kirking DM, Hurwitz ME, Vinuya RZ.Influence of sociodemographics on the health-related quality of life of pedia-tric patients with asthma and their caregivers. J Asthma 2002;39:107–17.

[5] Guyatt GH, Juniper EF, Griffith LE, Feeny DH, Ferrie PJ. Children and adultperceptions of childhood asthma. Pediatrics 1997;99:165–8.

[6] Okelo SO, Wu AW, Krishnan JA, Rand CS, Skinner EA, Diette GB. Emotionalquality-of-life and outcomes in adolescents with asthma. J Pediatr 2004;145:523–9.

[7] Annett RD. Assessment of health status and quality of life outcomes forchildren with asthma. J Allergy Clin Immunol 2001;107:S473–81.

[8] Sawyer MG, Spurrier N, Whaites L, Kennedy D, Martin AJ, Baghurst P. Therelationship between asthma severity, family functioning, and the health-related quality of life of children with asthma. Qual Life Res 2001;9:1105–15.

[9] Bacharier LB, Strunk RC, Mauger D, White D, Lemanske RF, Sorkness CA.Classifying asthma severity in children: mismatch between symptoms, med-ication use, and lung function. Am J Respir Crit Care Med 2004;170:426–32.

[10] Erickson SR, Kirking DM. Variation in the distribution of patient-reportedoutcomes based on different definitions of defining asthma severity. Curr MedRes Opin 2004;20:1863–72.

[11] National Heart Lung and Blood Institute. Expert panel report 3: guidelines forthe diagnosis and management of asthma. Bethesda, MD: National Institutesof Health; 2007.

[12] Ortega AN, Belanger KD, Bracken MB, Leaderer BP. A childhood asthmaseverity scale: symptoms, medications, and health care visits. Ann AllergyAsthma Immunol 2001;86:405–13.

[13] Clarke S, Eiser C. The measurement of health-related quality of life (QOL) inpaediatric clinical trials: a systematic review. Health Qual Life Outcomes2004;2:66–71.

[14] Drotar D. Validating measures of pediatric health status, functional status, andhealth-related quality of life: key methodological challenges and strategies.Ambul Pediatr 2004;4:358–64.

[15] Raat H, Mohangoo AD, Grootenhius MA. Pediatric health-related quality oflife questionnaires in clinical trials. Curr Opin Allergy Clin Immunol 2006;6:180–5.

[16] Eiser C, Morse R. A review of measures of quality of life for children withchronic illness. Arch Dis Child 2001;84:205–11.

[17] Spieth LE, Harris CV. Assessment of health-related quality of life in childrenand adolescents: an integrative review. J Pediatr Psychol 1996;21:175–93.

Page 7: Asthma severity and child quality of life in pediatric asthma: A systematic review

R.S. Everhart, B.H. Fiese / Patient Education and Counseling 75 (2009) 162–168168

[18] Bender BG. Measurement of quality of life in pediatric asthma clinical trials.Ann Allergy Asthma Immunol 1996;77:438–47.

[19] Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M.Measuring quality of life in children with asthma. Qual Life Res 1996;5:35–46.

[20] Annett RD, Bender BG, Lapidus J, DuHamel TR, Lincoln A. Predicting children’squality of life in an asthma clinical trial: what do children’s reports tell us? JPediatr 2001;139:854–61.

[21] Chan KS, Mangione-Smith R, Burwinkle TM, Rossen M, Varni JW. The PedsQL:reliability and validity of the short-form generic core scales and asthmamodule. Med Care 2005;43:256–65.

[22] Flapper BCT, Koopman HM, Napel C, van der Schans CP. Psychometric proper-ties of the TACQOL-asthma, a disease-specific measure of health relatedquality-of-life for children with asthma and their parents. Chron Respir Dis2006;3:65–72.

[23] Goldbeck L, Koffmane K, Lecheler J, Thiessen K, Fegert JM. Disease severity,mental health, and quality of life of children and adolescents with asthma.Pediatr Pulm 2007;42:15–22.

[24] Gorelick MH, Brousseau DC, Stevens MW. Validity and responsiveness of abrief, asthma-specific quality-of-life instrument in children with acuteasthma. Ann Allergy Asthma Immunol 2004;92:47–51.

[25] Horner SD, Kieckhefer GM, Fouladi RT. Measuring asthma severity: instrumentrefinement. J Asthma 2006;43:533–8.

[26] Kwok MY, Walsh-Kelly CM, Gorelick MH, Grabowski L, Kelly KJ. NationalAsthma Education and Prevention Program severity classification as a mea-sure of disease burden in children with acute asthma. Pediatrics 2006;117:S71–7.

[27] Montalto D, Bruzzese JM, Moskaleva G, Higgins-D’Alessandro A, Webber MP.Quality of life in young urban children: does asthma make a difference? JAsthma 2004;41:497–505.

[28] Van De Ven MOM, Engels RCME, Sawyer SM, Otten R, Van Den Ejnden RJJM.The role of coping strategies in quality of life of adolescents with asthma. QualLife Res 2007;16:625–34.

[29] Warschburger P, Busch S, Bauer CP, Kiosz D, Stachow R, Petermann F. Health-related quality of life in children and adolescents with asthma: results fromthe ESTAR study. J Asthma 2004;41:463–70.

[30] Williams S, Sehgal M, Falter K, Dennis R, Jones D, Boudreaux J, Homa D, Raskin-Hood C, Brown C, Griffith M, Redd S. Effect of asthma on the quality of lifeamong children and their caregivers in the Atlanta empowerment zone. JUrban Health 2000;77:268–79.

[31] Schmier JK, Chan KS, Leidy NK. The impact of asthma on health-related qualityof life. J Asthma 1998;35:585–97.

[32] Juniper EF. How important is quality of life in pediatric asthma? Pediatr Pulm1997;15:17–21.

[33] Patterson JM, McCubbin HI. The impact of family life events and changes onthe health of a chronically ill child. Fam Relat 1983;32:255–64.

[34] Bartlett SJ, Krishnan JA, Riekert KA, Butz AM, Malveaux FJ, Rand CS. Maternaldepressive symptoms and adherence to therapy in inner-city children withasthma. Pediatrics 2004;113:229–37.

[35] Rosier MJ, Bishop J, Nolan T, Robertson CF, Carlin JB, Phelan PD. Measurementof functional severity of asthma in children. Am J Respir Crit Care Med1994;149:1434–41.

[36] Rand CS, Butz AM, Kolodner K, Huss K, Eggleston P, Malveaux F. Emergencydepartment visits by urban African American children with asthma. J AllergyClin Immunol 2000;105:83–90.

[37] Everhart RS, Fiese BF, Smyth JM. A cumulative risk model predicting caregiverquality of life in pediatric asthma. J Pediatr Psychol 2008;33:809–18.

[38] Appleyard K, Egeland B, van Dulmen MHM, Sroufe LA. When more is notbetter: the role of cumulative risk in child behavior outcomes. J Child PsycholPsychiat 2005;46:235–45.