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Comparison between the health-related quality of life of children/adolescents with asthma and that of their caregivers: a systematic review and meta-analysis

ABSTRACT

Objective:

To evaluate the health-related quality of life (HRQoL) of children/adolescents with asthma and that of their caregivers, comparing the two.

Methods:

This was a systematic review and meta-analysis based on the criteria of Preferred Reporting Items for Systematic Reviews and Meta-Analyses, with a strategy of searching five health-related databases (MEDLINE/PubMed, EMBASE, ScienceDirect, SciELO, and LILACS). We included studies that evaluated the HRQoL of children/adolescents with asthma and that of their caregivers with the Pediatric Asthma Quality of Life Questionnaire and the Pediatric Asthma Caregiver’s Quality of Life Questionnaire, respectively, using the total scores and the scores on the domains activity limitation, symptoms (children/adolescents only), and emotional function.

Results:

We identified 291 articles, and we evaluated 133 of those. A total of 33 articles, collectively including 4,101 subjects, were included in the meta-analysis. An analysis stratified by study design showed no differences between the HRQoL of the caregivers and that of the children/adolescents in the activity limitation domain and in the total score. However, the mean emotional function domain scores were significantly higher (better) among children/adolescents with asthma than among their caregivers in longitudinal studies-Δ = 0.82 (0.21-1.44)-and randomized clinical trials-Δ = 0.52 (0.29-0.79)-although not in cross-sectional studies-Δ = −0.20 (−0.03 to 0.43).

Conclusions:

The total HRQoL scores proved to be similar between children/adolescents with asthma and their caregivers. However, the two groups differed in their perception of their emotional function, the caregivers scoring significantly lower than the children/adolescents in that domain.

Keywords:
Asthma; Quality of life; Surveys and questionnaires

RESUMO

Objetivo:

Avaliar e comparar os níveis de qualidade de vida relacionada à saúde (QVRS) de crianças/adolescentes com asma e de seus cuidadores.

Métodos:

Revisão sistemática e meta-análise baseada nos critérios de Preferred Reporting Items for Systematic Reviews and Meta-Analyses, com estratégia de busca em cinco bases de dados em saúde (MEDLINE/PubMed, EMBASE, ScienceDirect, SciELO e LILACS). Foram incluídos estudos que avaliaram a QVRS de crianças/adolescentes com asma e de seus cuidadores por meio dos escores totais e dos domínios limitação de atividades, sintomas (somente crianças/adolescentes) e função emocional do Pediatric Asthma Quality of Life Questionnaire e do Pediatric Asthma Caregiver’s Quality of Life Questionnaire, respectivamente.

Resultados:

Do total de 291 artigos identificados, 133 foram avaliados e 33 foram incluídos na meta-análise, totalizando 4.101 sujeitos. A análise estratificada por tipo de delineamento não mostrou diferenças entre a QVRS de cuidadores e de crianças/adolescentes no domínio limitação de atividades e no escore total. Contudo, houve diferenças das médias no domínio função emocional em estudos longitudinais e ensaios clínicos randomizados - estudos transversais: Δ = −0,20 (−0,03 a 0,43); estudos longitudinais: Δ = 0,82 (0,21-1,44); e ensaios clínicos randomizados: Δ = 0,52 (0,29-0,79) - sendo que os cuidadores apresentaram menores escores que as crianças/adolescentes com asma.

Conclusões:

Os escores da QVRS entre cuidadores e crianças/adolescentes com asma demonstraram ser semelhantes quanto aos escores totais, mas divergiram na percepção das limitações emocionais, visto que os cuidadores apresentaram escores significativamente menores que as crianças/adolescentes nesse domínio.

Descritores:
Asma; Qualidade de vida; Inquéritos e questionários

INTRODUCTION

Asthma is a chronic inflammatory disease that affects individuals of all ages, especially children. Asthma is considered a global health problem, affecting 300 million people worldwide,11 Global Initiative for Asthma (GINA) [homepage on the Internet]. Bethesda: GINA; c2017 [cited 2018 Mar 6]. 2017 GINA Report Global Strategy for Asthma Management and Prevention. Available from: http://ginasthma.org/2017-gina-report-global-strategy-for-asthma-management-and-prevention/
http://ginasthma.org/2017-gina-report-gl...
and it is estimated that there are approximately 20 million individuals with asthma in Brazil. In pediatric patients, the prevalence of asthma is 20%.22 Solé D, Camelo-Nunes IC, Wandalsen GF, Pastorino AC, Jacob CM, Gonzalez C, et al. Prevalence of symptoms of asthma, rhinitis, and atopic eczema in Brazilian adolescents related to exposure to gaseous air pollutants and socioeconomic status. J Investig Allergol Clin Immunol. 2007;17(1):6-13.,33 Roncada C, de Oliveira SG, Cidade SF, Sarria EE, Mattiello R, Ojeda BS, et al. Burden of asthma among inner-city children from Southern Brazil. J Asthma. 2016;53(5):498-504. https://doi.org/10.3109/02770903.2015.1108438
https://doi.org/10.3109/02770903.2015.11...

Asthma affects not only the patient but also their family. Over time, asthma can negatively affect the quality of life (QoL) of children and adolescents, as well as that of their parents and family members.44 Nogueira KT. Avaliação da qualidade de vida entre adolescentes asmáticos [thesis]. Rio de Janeiro: Instituto de Medicina Social, Universidade do Estado do Rio de Janeiro; 2007.

The World Health Organization Quality of Life Group defines QoL as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns”.55 The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403-1409. https://doi.org/10.1016/0277-9536(95)00112-K
https://doi.org/10.1016/0277-9536(95)001...
Therefore, for a complete picture of patient health status, conventional clinical indices and health-related QoL (HRQoL) must be assessed.66 Juniper EF. How important is quality of life in pediatric asthma? Pediatr Pulmonol Suppl. 1997;15:17-21. https://doi.org/10.1002/(SICI)1099-0496(199709)15+<17::AID-PPUL5>3.0.CO;2-O
https://doi.org/10.1002/(SICI)1099-0496(...

Parents and family members play an important role in the QoL of children and adolescents with asthma. Parental perception of asthma severity is an important determinant of asthma management and control.77 Mandhane PJ, McGhan SL, Sharpe HM, Wong E, Hessel PA, Befus AD, et al. A child's asthma quality of life rating does not significantly influence management of their asthma. Pediatr Pulmonol. 2010;45(2):141-148. https://doi.org/10.1002/ppul.21157
https://doi.org/10.1002/ppul.21157...
,88 Park M, Chesla CK. Understanding complexity of Asian American family care practices. Arch Psychiatr Nurs. 2010;24(3):189-201. https://doi.org/10.1016/j.apnu.2009.06.005
https://doi.org/10.1016/j.apnu.2009.06.0...
In the process of caring for a child or adolescent with asthma, parents and family members should have a correct perception of the disease.99 Payrovee Z, Kashaninia Z, Alireza Mahdaviani S, Rezasoltani P. Effect of Family Empowerment on the Quality of life of School-Aged Children with Asthma. Tanaffos. 2014;13(1):35-42.

Pediatric chronic disease negatively affects family function and HRQoL. Parents and family members of children and adolescents with chronic disease have concerns and responsibilities related to the health needs of their children, educational/medical services, disease costs, missed social opportunities, and work absenteeism, as well as having to cope with physical and emotional problems.1010 Hockenberry MJ, Wilson D. Wong's nursing care of infants and children-E-book. Philadelphia: Elsevier Health Sciences; 2014.

In this context, the objective of the present study was to evaluate the HRQoL of children and adolescents with asthma and that of their caregivers, comparing the two.

METHODS

This was a meta-analysis based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria,1111 Moher D, Liberati A, Tetzlaff J, Altman DG; PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement [published correction appears in Int J Surg. 2010;8(8):658]. Int J Surg. 2010;8(5):336-341. https://doi.org/10.1016/j.ijsu.2010.02.007
https://doi.org/10.1016/j.ijsu.2010.02.0...
with a strategy of searching five health-related databases for studies assessing disease control in children and adolescents with asthma, as well as the HRQoL of the patients and their parents and family members.

We included studies that evaluated the HRQoL of children/adolescents with asthma and that of their caregivers with the Pediatric Asthma Quality of Life Questionnaire (PAQLQ)1212 Elizabeth C, Suzanna S, Tim CF, Shek LP, Mital R, Bee Wah L. Pediatric asthma quality of life questionnaire: validation in children from Singapore [published correction appears in Asian Pac J Allergy Immunol. 2014;32(2):144. Chi, S L [corrected to Shek, L P] Bee-Wah, L [corrected to Bee Wah, L]]. Asian Pac J Allergy Immunol. 1999;17(3):155-161. and the Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ),1313 Stelmach I, Podlecka D, Smejda K, Majak P, Jerzynska J, Stelmach R, et al. Pediatric asthma caregiver's quality of life questionnaire is a useful tool for monitoring asthma in children. Qual Life Res. 2012;21(9):1639-1642. https://doi.org/10.1007/s11136-011-0070-x
https://doi.org/10.1007/s11136-011-0070-...
respectively, using the total scores and the scores on the domains activity limitation, symptoms (children/adolescents only), and emotional function. The primary outcome measure was a comparison of the total scores and the scores on the domains activity limitation and emotional function between the two groups (i.e., children/adolescents with asthma and their parents/caregivers).

Search strategy

The search strategy included the following terms and Boolean operators: (Asthma AND (PAQLQ OR “Pediatric Asthma Quality of Life Questionnaire”) AND (PACQLQ OR “Pediatric Asthma Caregiver’s Quality of Life Questionnaire”). We searched the following databases: MEDLINE (PubMed); EMBASE and ScienceDirect (Elsevier); and SciELO and LILACS (BIREME). All searches were performed in October of 2018, and no date limits were applied to the searches.

Searches were limited to title, keyword, and abstract fields. In the MEDLINE (PubMed) database, for example, we employed the following search strategy: (Asthma[Title/Abstract] OR Asthma[MeshTerms]) AND (PAQLQ[Title/Abstract] OR PAQLQ[MeshTerms] OR “Pediatric Asthma Quality of Life Questionnaire”[Title/Abstract] OR “Pediatric Asthma Quality of Life Questionnaire”[MeshTerms]) AND (PACQLQ[Title/Abstract] OR PACQLQ[MeshTerms] OR “Pediatric Asthma Caregiver’s Quality of Life Questionnaire”[Title/Abstract] OR “Pediatric Asthma Caregiver’s Quality of Life Questionnaire”[MeshTerms]). Searches were not limited by language of publication or target audience. Potentially eligible articles were exported from the aforementioned health-related databases as .txt (MEDLINE), .bib (BibiTeX), or .ris (RIS) files including the following data: author names, article title, keywords, journal of publication, year of publication, type of article, and abstract.

Identification, selection bias, inclusion criteria, and study characteristics

The StArt (State of the Art through Systematic Review) software, developed by the Federal University of São Carlos Software Engineering Research Laboratory (located in the city of São Carlos, Brazil) and designed specifically for systematic reviews,1414 Srivastava SK. Green supply chain management: a state-of-the-art literature review. Int J Management Rev. 2007;9(1):53-80. https://doi.org/10.1111/j.1468-2370.2007.00202.x
https://doi.org/10.1111/j.1468-2370.2007...
was used in order to design a flow chart of the article selection process, including the following steps: a) Identification: identification of potentially eligible studies; b) Selection: exclusion of duplicates and screening by reading titles and abstracts; c) Eligibility: screening by reading the full text; and d) Inclusion: eligible studies meeting the inclusion criteria. Each step of the process was performed by two researchers and reviewed by a third, the criteria for article selection being as follows: inclusion of all articles selected by both researchers; exclusion of all articles selected by neither researcher; inclusion of all articles selected by only one researcher but meeting the inclusion criteria according to the reviewer. To identify additional studies (gray literature) for inclusion, we carried out a hand search of the references cited in the studies selected during the Eligibility step of the article selection process (i.e., screening by reading the full text).

The studies included in the systematic review were cross-sectional studies or early-phase longitudinal studies, case-control studies, or randomized clinical trials that used primary or secondary data on total and domain scores on the PAQLQ (children/adolescents with asthma) and PACQLQ (parents/caregivers).1212 Elizabeth C, Suzanna S, Tim CF, Shek LP, Mital R, Bee Wah L. Pediatric asthma quality of life questionnaire: validation in children from Singapore [published correction appears in Asian Pac J Allergy Immunol. 2014;32(2):144. Chi, S L [corrected to Shek, L P] Bee-Wah, L [corrected to Bee Wah, L]]. Asian Pac J Allergy Immunol. 1999;17(3):155-161.,1313 Stelmach I, Podlecka D, Smejda K, Majak P, Jerzynska J, Stelmach R, et al. Pediatric asthma caregiver's quality of life questionnaire is a useful tool for monitoring asthma in children. Qual Life Res. 2012;21(9):1639-1642. https://doi.org/10.1007/s11136-011-0070-x
https://doi.org/10.1007/s11136-011-0070-...
We excluded studies in which the HRQoL of children/adolescents with asthma and that of their parents/caregivers was assessed by instruments other than the PAQLQ and PACQLQ.

Data extraction and presentation

We extracted and tabulated data on the characteristics of each eligible study, including the name of the first author, year of publication, study site, study design, patient age, and study participants. The eligibility criteria for data extraction were the same as the criteria used in order to classify the sample and included patient age, sex, race, asthma severity/level of asthma control, physician-diagnosed rhinitis/atopy, lung function, and fractional exhaled nitric oxide. For comparative analysis, we extracted data on total and domain scores on the PAQLQ and PACQLQ.1212 Elizabeth C, Suzanna S, Tim CF, Shek LP, Mital R, Bee Wah L. Pediatric asthma quality of life questionnaire: validation in children from Singapore [published correction appears in Asian Pac J Allergy Immunol. 2014;32(2):144. Chi, S L [corrected to Shek, L P] Bee-Wah, L [corrected to Bee Wah, L]]. Asian Pac J Allergy Immunol. 1999;17(3):155-161.,1313 Stelmach I, Podlecka D, Smejda K, Majak P, Jerzynska J, Stelmach R, et al. Pediatric asthma caregiver's quality of life questionnaire is a useful tool for monitoring asthma in children. Qual Life Res. 2012;21(9):1639-1642. https://doi.org/10.1007/s11136-011-0070-x
https://doi.org/10.1007/s11136-011-0070-...

Data are presented so as to demonstrate values for each study design, general study characteristics (author(s) and year of publication), and participant characteristics, as well as weighted means of total scores, activity limitation domain scores, and emotional function domain scores on the HRQoL questionnaires.

Statistical analysis

For the meta-analysis of the outcome measures, we used the Review Manager software, version 5.3 (RevMan 5; Cochrane Collaboration, Oxford, UK),1515 Deeks JJ, Higgins JP. Statistical algorithms in review manager 5. Statistical Methods Group of The Cochrane Collaboration. 2010;1-11. using random-effects models and inverse variance weighting to calculate the (bivariate) mean difference rate, with 95% CIs, heterogeneity (I2), and total overall effect size (Z). The level of significance was set at p < 0.05 for mean total and domain HRQoL scores for within-group and between-group comparisons by study design: cross-sectional studies, longitudinal (cohort) studies, and randomized clinical trials.

Systematic review registration

The study protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) prior to research activities (Registration no. CRD42017081293).

RESULTS

A total of 129 articles were retrieved from the health-related databases: MEDLINE/PubMed (n = 22), EMBASE (n = 55), ScienceDirect (n = 43), SciELO (n = 4), and LILACS (n = 5). Another 5 were added from the gray literature. Therefore, a total of 134 articles were initially selected for inclusion. Of those 133 articles, 100 were excluded. Of those, 9 were duplicates (appearing in more than one database), 78 were screened out following a review of titles and abstracts, and 13 were screened out following full-text assessment. Therefore, as can be seen in Figure 1, a total of 33 studies were included in the meta-analysis.1616 Ahmed PA, Ulonnam CC, Mohammed-Nafi'u R. Assessment of quality of life among children with bronchial asthma and their caregivers at the National Hospital Abuja, Nigeria. Niger J Paediatr. 2016;43(2):88-94. https://doi.org/10.4314/njp.v43i2.5
https://doi.org/10.4314/njp.v43i2.5...

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https://doi.org/10.1016/j.pupt.2017.02.0...

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Figure 1
Flow chart of the article selection process, in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria.1111 Moher D, Liberati A, Tetzlaff J, Altman DG; PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement [published correction appears in Int J Surg. 2010;8(8):658]. Int J Surg. 2010;8(5):336-341. https://doi.org/10.1016/j.ijsu.2010.02.007
https://doi.org/10.1016/j.ijsu.2010.02.0...
HRQoL: health-related quality of life.

Of the 33 included studies,1616 Ahmed PA, Ulonnam CC, Mohammed-Nafi'u R. Assessment of quality of life among children with bronchial asthma and their caregivers at the National Hospital Abuja, Nigeria. Niger J Paediatr. 2016;43(2):88-94. https://doi.org/10.4314/njp.v43i2.5
https://doi.org/10.4314/njp.v43i2.5...

17 Almomani BA, Mayyas RK, Ekteish FA, Ayoub AM, Ababneh MA, Alzoubi SA. The effectiveness of clinical pharmacist's intervention in improving asthma care in children and adolescents: Randomized controlled study in Jordan. Patient Educ Couns. 2017;100(4):728-735. https://doi.org/10.1016/j.pec.2016.11.002
https://doi.org/10.1016/j.pec.2016.11.00...

18 Ammari WG, Al-Hyari N, Obeidat N, Khater M, Sabouba A, Sanders M. Mastery of pMDI technique, asthma control and quality-of-life of children with asthma: A randomized controlled study comparing two inhaler technique training approaches. Pulm Pharmacol Ther. 2017;43:46-54. https://doi.org/10.1016/j.pupt.2017.02.002
https://doi.org/10.1016/j.pupt.2017.02.0...

19 Berger WE, Leflein JG, Geller DE, Parasuraman B, Miller CJ, O'Brien CD, et al. The safety and clinical benefit of budesonide/formoterol pressurized metered-dose inhaler versus budesonide alone in children. Allergy Asthma Proc. 2010;31(1):26-39.

20 Burks ML, Brooks EG, Hill VL, Peters JI, Wood PR. Assessing proxy reports: agreement between children with asthma and their caregivers on quality of life [published correction appears in Ann Allergy Asthma Immunol. 2013;111(4):309]. Ann Allergy Asthma Immunol. 2013;111(1):14-19. https://doi.org/10.1016/j.anai.2013.05.008
https://doi.org/10.1016/j.anai.2013.05.0...

21 Bushnell DM, Martin ML, Parasuraman B. Electronic versus paper questionnaires: a further comparison in persons with asthma. J Asthma. 2003;40(7):751-762. https://doi.org/10.1081/JAS-120023501
https://doi.org/10.1081/JAS-120023501...

22 Cano-Garcinuño A, Díaz-Vázquez C, Carvajal-Urueña I, Praena-Crespo M, Gatti-Viñoly A, García-Guerra I. Group education on asthma for children and caregivers: a randomized, controlled trial addressing effects on morbidity and quality of life. J Investig Allergol Clin Immunol. 2007;17(4):216-226.

23 Ducret CB, Verga M, Stoky-Hess A, Verga J, Gehri M. Impact d'une école de l'asthme sur la consommation en soins et la qualité de vie des enfants âgés de 4 à 12 ans et de leurs parents. Arch Pediatr. 2013;20(11):1201-1205. https://doi.org/10.1016/j.arcped.2013.08.021
https://doi.org/10.1016/j.arcped.2013.08...

24 Erickson SR, Munzenberger PJ, Plante MJ, Kirking DM, Hurwitz ME, Vanuya RZ. Influence of sociodemographics on the health-related quality of life of pediatric patients with asthma and their caregivers. J Asthma. 2002;39(2):107-117. https://doi.org/10.1081/JAS-120002192
https://doi.org/10.1081/JAS-120002192...

25 Fleming L, Murray C, Bansal AT, Hashimoto S, Bisgaard H, Bush A, et al. The burden of severe asthma in childhood and adolescence: results from the paediatric U-BIOPRED cohorts [published correction appears in Eur Respir J. 2017;49(6):]. Eur Respir J. 2015;46(5):1322-1333. https://doi.org/10.1183/13993003.00780-2015
https://doi.org/10.1183/13993003.00780-2...

26 Halterman JS, Riekert K, Bayer A, Fagnano M, Tremblay P, Blaakman S, et al. A pilot study to enhance preventive asthma care among urban adolescents with asthma. J Asthma. 2011;48(5):523-530. https://doi.org/10.3109/02770903.2011.576741
https://doi.org/10.3109/02770903.2011.57...

27 Juniper EF, Gruffydd-Jones K, Ward S, Svensson K. Asthma Control Questionnaire in children: validation, measurement properties, interpretation. Eur Respir J. 2010;36(6):1410-1416. https://doi.org/10.1183/09031936.00117509
https://doi.org/10.1183/09031936.0011750...

28 Kamps AW, Brand PL, Kimpen JL, Maillé AR, Overgoor-van de Groes AW, van Helsdingen-Peek LC, et al. Outpatient management of childhood asthma by paediatrician or asthma nurse: randomised controlled study with one year follow up. Thorax. 2003;58(11):968-973. https://doi.org/10.1136/thorax.58.11.968
https://doi.org/10.1136/thorax.58.11.968...

29 Lang JE, Hossain MJ, Lima JJ. Overweight children report qualitatively distinct asthma symptoms: analysis of validated symptom measures. J Allergy Clin Immunol. 2015;135(4):886-93.e3. https://doi.org/10.1016/j.jaci.2014.08.029
https://doi.org/10.1016/j.jaci.2014.08.0...

30 Lenney W, McKay AJ, Tudur Smith C, Williamson PR, James M, Price D, et al. Management of Asthma in School age Children On Therapy (MASCOT): a randomised, double-blind, placebo-controlled, parallel study of efficacy and safety. Health Technol Assess. 2013;17(4):1-218. https://doi.org/10.3310/hta17040
https://doi.org/10.3310/hta17040...

31 Liu Z, Qureshi K. Efficacy of an Asthma Self-management Education Intervention for Children (9-13 Years) with Asthma and Their Caregiver in Wuhan, China. J US-China Med Sci. 2016;13:117-128. https://doi.org/10.17265/1548-6648/2016.03.001
https://doi.org/10.17265/1548-6648/2016....

32 Meza ÉD, Puentes ÓUB, Blanc JPG, García MG, Halley PD, Duque CAT. Evaluación del control del asma y la calidad de vida de los niños y sus padres o cuidadores en un programa de atención integral del asma (Programa Asmaire Infantil). Rev Medica Sanitas. 2012;15(4):36-42.

33 Minard JP, Thomas N, Olajos-Clos J, Juniper EF, Jiang X, Jenkins B, et al. Burden Of Childhood Asthma: Relationship Between Pediatric And Caregiver Electronic Quality Of Life Questionnaires. ATS. 2011:A1435. https://doi.org/10.1164/ajrccm-conference.2011.183.1_MeetingAbstracts.A1435
https://doi.org/10.1164/ajrccm-conferenc...

34 Minard JP, Thomas NJ, Olajos-Clow JG, Wasilewski NV, Jenkins B, Taite AK, et al. Assessing the burden of childhood asthma: validation of electronic versions of the Mini Pediatric and Pediatric Asthma Caregiver's Quality of Life Questionnaires. Qual Life Res. 2016;25(1):63-69. https://doi.org/10.1007/s11136-015-1055-y
https://doi.org/10.1007/s11136-015-1055-...

35 Moreira A, Delgado L, Haahtela T, Fonseca J, Moreira P, Lopes C, et al. Physical training does not increase allergic inflammation in asthmatic children. Eur Respir J. 2008;32(6):1570-1575. https://doi.org/10.1183/09031936.00171707
https://doi.org/10.1183/09031936.0017170...

36 Murray CS, Foden P, Sumner H, Shepley E, Custovic A, Simpson A. Preventing Severe Asthma Exacerbations in Children. A Randomized Trial of Mite-Impermeable Bedcovers. Am J Respir Crit Care Med. 2017;196(2):150-158. https://doi.org/10.1164/rccm.201609-1966OC
https://doi.org/10.1164/rccm.201609-1966...

37 Mussaffi H, Omer R, Prais D, Mei-Zahav M, Weiss-Kasirer T, Botzer Z, et al. Computerised paediatric asthma quality of life questionnaires in routine care. Arch Dis Child. 2007;92(8):678-682. https://doi.org/10.1136/adc.2006.111971
https://doi.org/10.1136/adc.2006.111971...

38 Nair S, Nair S, Sundaram KR. A prospective study to assess the quality of life in children with asthma using the pediatric asthma quality of life questionnaire. Indian J Allergy Asthma Immunol. 2014;28(1):13-18. https://doi.org/10.4103/0972-6691.134210
https://doi.org/10.4103/0972-6691.134210...

39 Ovšonková A, Plavnická I, Jeseňák M. The quality of life of parents and children with asthma bronchial. Ošetřovatelství a porodní asistence. 2012;3(3):424-432.

40 Strunk RC, Bacharier LB, Phillips BR, Szefler SJ, Zeiger RS, Chinchilli VM, et al. Azithromycin or montelukast as inhaled corticosteroid-sparing agents in moderate-to-severe childhood asthma study. J Allergy Clin Immunol. 2008;122(6):1138-1144.e4. https://doi.org/10.1016/j.jaci.2008.09.028
https://doi.org/10.1016/j.jaci.2008.09.0...

41 Szabó A, Mezei G, Kovári E, Cserháti E. Depressive symptoms amongst asthmatic children's caregivers. Pediatr Allergy Immunol. 2010;21(4 Pt 2):e667-e673. https://doi.org/10.1111/j.1399-3038.2009.00896.x
https://doi.org/10.1111/j.1399-3038.2009...

42 Tibosch M, Reidsma C, Landstra A, Hugen C, Gerrits P, Brouwer M, et al. An asthma-related quality of life instrument is unable to identify asthmatic children with major psychosocial problems. Eur J Pediatr. 2010;169(12):1495-1501. https://doi.org/10.1007/s00431-010-1250-3
https://doi.org/10.1007/s00431-010-1250-...

43 van Bragt S, van den Bemt L, Kievits R, Merkus P, van Weel C, Schermer T. PELICAN: a cluster-randomized controlled trial in Dutch general practices to assess a self-management support intervention based on individual goals for children with asthma. J Asthma. 2015;52(2):211-219. https://doi.org/10.3109/02770903.2014.952439
https://doi.org/10.3109/02770903.2014.95...

44 van Gent R, van Essen LE, Rovers MM, Kimpen JL, van der Ent CK, de Meer G. Quality of life in children with undiagnosed and diagnosed asthma. Eur J Pediatr. 2007;166(8):843-848. https://doi.org/10.1007/s00431-006-0358-y
https://doi.org/10.1007/s00431-006-0358-...

45 Voorend-van Bergen S, Vaessen-Verberne AA, Landstra AM, Brackel HJ, van den Berg NJ, Caudri D, et al. Monitoring childhood asthma: web-based diaries and the asthma control test. J Allergy Clin Immunol. 2014;133(6):1599-605.e2. https://doi.org/10.1016/j.jaci.2013.10.005
https://doi.org/10.1016/j.jaci.2013.10.0...

46 Voorend-van Bergen S, Vaessen-Verberne AA, Brackel HJ, Landstra AM, van den Berg NJ, Hop WC, et al. Monitoring strategies in children with asthma: a randomised controlled trial. Thorax. 2015;70(6):543-550. https://doi.org/10.1136/thoraxjnl-2014-206161
https://doi.org/10.1136/thoraxjnl-2014-2...

47 Williams J, Williams K. Asthma-specific quality of life questionnaires in children: are they useful and feasible in routine clinical practice?. Pediatr Pulmonol. 2003;35(2):114-118. https://doi.org/10.1002/ppul.10206
https://doi.org/10.1002/ppul.10206...
-4848 Yun TJ, Jeong HY, Hill TD, Lesnick B, Brown R, Abowd GD, et al. Using SMS to provide continuous assessment and improve health outcomes for children with asthma. Proceedings of the 2nd ACM SIGHIT International Health Informatics Symposium; 2012 Jan; Miami FL, USA. ACM; 2012. p. 621-630. https://doi.org/10.1145/2110363.2110432
https://doi.org/10.1145/2110363.2110432...
28 (85%) were published in the last decade, evaluating children and adolescents in the 2- to 18-year age bracket. With regard to study design, 15 (45.4%) were randomized clinical trials, 11 (33%) were cross-sectional studies, and 7 (21.2%) were longitudinal (cohort) studies. With regard to study site, 17 (48%) were conducted in Europe, 12 (36%) were conducted in North or South America, 4 (12%) were conducted in Asia, and 1 (3%) was conducted in Africa (Table 1).

Table 1
General characteristics of the included studies (N = 33), including the total number of participants (N = 4,101).

Table 2 shows the weighted values for the 33 studies included in the systematic review. The studies collectively included a total of 4,101 participants (children/adolescents with asthma and their parents/caregivers) assessed for QoL by total PAQLQ and PACQLQ scores, respectively.1212 Elizabeth C, Suzanna S, Tim CF, Shek LP, Mital R, Bee Wah L. Pediatric asthma quality of life questionnaire: validation in children from Singapore [published correction appears in Asian Pac J Allergy Immunol. 2014;32(2):144. Chi, S L [corrected to Shek, L P] Bee-Wah, L [corrected to Bee Wah, L]]. Asian Pac J Allergy Immunol. 1999;17(3):155-161.,1313 Stelmach I, Podlecka D, Smejda K, Majak P, Jerzynska J, Stelmach R, et al. Pediatric asthma caregiver's quality of life questionnaire is a useful tool for monitoring asthma in children. Qual Life Res. 2012;21(9):1639-1642. https://doi.org/10.1007/s11136-011-0070-x
https://doi.org/10.1007/s11136-011-0070-...

Table 2
Weighted characteristics of the analyzed sample (N = 4,101).a

Figure 2 shows a comparison of activity limitation domain scores between children/adolescents with asthma and their caregivers, by study design. A total of 8 cross-sectional studies collectively assessed 1,295 participants (caregivers/children), showing high heterogeneity (I2 = 97%) and a total effect size with no significant difference in mean scores between the two groups (Z = 1.06; p = 0.290). A total of 6 longitudinal studies collectively assessed 661 participants, showing high heterogeneity (I2 = 98%) and Z = 0.07 (p = 0.940). A total of 8 randomized clinical trials collectively assessed 840 participants, showing high heterogeneity (I2 = 98%) and Z = 0.96 (p = 0.340).

Figure 2
Comparison between mean Pediatric Asthma Quality of Life Questionnaire (PAQLQ) and Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ) activity limitation domain scores.

These results were reflected in the total weighted mean, with no between-group differences in activity limitation domain scores among 2,796 participants and with high within-group heterogeneity (I2 = 98%; p < 0.001), high but not significant between-group homogeneity (I2 = 0%; p = 0.789), and a low total overall effect size (Z = 1.81; p = 0.070).

Figure 3 shows a comparison of emotional function domain scores between children/adolescents with asthma and their caregivers, by study design. A total of 8 cross-sectional studies collectively assessed 1,295 participants, showing high heterogeneity (I2 = 82%; p < 0.001) and a low overall effect size (Z = 1.73; p = 0.080). A total of 5 longitudinal studies collectively assessed 390 subjects, showing high heterogeneity (I2 = 93%; p < 0.001). However, there was a significant difference between children/adolescents with asthma and their caregivers regarding the weighted means (Δ = 0.82; 95% CI: 0.213-1.44), with a high overall effect size (Z = 2.61; p = 0.009). A total of 7 randomized clinical trials collectively assessed 806 participants, showing high heterogeneity (I2 = 82%; p < 0.001), the significant difference between children/adolescents with asthma and their caregivers regarding the weighted means (Δ = 0.63; 95% CI: 0.36-0.90) being reflected in the overall effect size (Z = 4.49; p < 0.001).

Figure 3
Comparison between mean Pediatric Asthma Quality of Life Questionnaire (PAQLQ) and Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ) emotional function domain scores.

The total weighted mean of emotional function domain scores showed that they were higher (better) among children/adolescents with asthma than among their caregivers. A total of 2,491 participants were assessed. Although heterogeneity was high (I2 = 93%; p < 0.001), the total overall effect size was moderate (Z = 4.52; p < 0.001), with a statistically significant difference between the two groups (Δ = 0.52; 95% CI: 0.29-0.75). In addition, there was moderate between-group heterogeneity among study designs (I2 = 73.4%; p < 0.05), with longitudinal studies showing the highest mean (Δ = 0.82; 95% CI: 0.21-1.44) and cross-sectional studies showing the lowest mean (Δ = −0.20; 95% CI: −0.03 to 0.43).

A comparison of the weighted means of total HRQoL scores between children/adolescents with asthma and their caregivers (N = 4,101; Figure 4) showed high within-group heterogeneity by study design and a statistically insignificant total effect size, being reflected in the overall between-group heterogeneity (I2 = 96%; Δ = 0.03 [95% CI: −0.10 to −0.17]), with a total overall effect size of Z = 0.49 (p = 0.620).

Figure 4
Comparison between mean total Pediatric Asthma Quality of Life Questionnaire (PAQLQ) and Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ) scores.

DISCUSSION

Asthma is a chronic noncommunicable disease with a high global burden, resulting in high rates of work/school absenteeism, as well as in increased emergency room visits and hospitalizations, primarily due to a lack of medical diagnosis and to government neglect of asthma management.11 Global Initiative for Asthma (GINA) [homepage on the Internet]. Bethesda: GINA; c2017 [cited 2018 Mar 6]. 2017 GINA Report Global Strategy for Asthma Management and Prevention. Available from: http://ginasthma.org/2017-gina-report-global-strategy-for-asthma-management-and-prevention/
http://ginasthma.org/2017-gina-report-gl...

In the last two decades, the assessment of HRQoL in children/adolescents with asthma and their families has gained a prominent role in the management (treatment and control) of asthma. Pharmacological treatment adherence and symptom control, as well as self-perceived physical, emotional, and social well-being among patients and their families, play a crucial role in effective disease management.4949 Schmier JK, Chan KS, Leidy NK. The impact of asthma on health-related quality of life. J Asthma. 1998;35(7):585-597. https://doi.org/10.3109/02770909809048961
https://doi.org/10.3109/0277090980904896...

In the present study, we conducted a meta-analysis of studies assessing total and individual domain scores on previously validated and widely used HRQoL questionnaires, performing an analysis stratified by study design. Longitudinal studies and randomized clinical trials showed that mean emotional function domain scores were significantly higher (better) among children/adolescents with asthma than among their caregivers, the difference between mean scores being greatest in longitudinal studies. Although there was no significant difference in mean emotional function domain scores across cross-sectional studies, the magnitude of the difference between the two groups remained the same in the overall analysis. These results corroborate the hypothesis that parents/caregivers are more emotionally affected by asthma than are their children, because parents/caregivers have concerns and responsibilities related to the health needs of their children. Self-perceived emotional functioning among parents/caregivers can vary depending on the age of the children, the negative impact of asthma on emotional function being greater on parents/caregivers of younger children.4141 Szabó A, Mezei G, Kovári E, Cserháti E. Depressive symptoms amongst asthmatic children's caregivers. Pediatr Allergy Immunol. 2010;21(4 Pt 2):e667-e673. https://doi.org/10.1111/j.1399-3038.2009.00896.x
https://doi.org/10.1111/j.1399-3038.2009...
,5050 Costa DD, Pitrez PM, Barroso NF, Roncada C. Asthma control in the quality of life levels of asthmatic patients' caregivers: a systematic review with meta-analysis and meta-regression. J Pediatr (Rio J). 2019;95(4):401-409. https://doi.org/10.1016/j.jped.2018.10.010
https://doi.org/10.1016/j.jped.2018.10.0...
,5151 Guyatt GH, Juniper EF, Griffith LE, Feeny DH, Ferrie PJ. Children and adult perceptions of childhood asthma. Pediatrics. 1997;99(2):165-168. https://doi.org/10.1542/peds.99.2.165
https://doi.org/10.1542/peds.99.2.165...
With regard to activity limitation domain scores, no significant differences were found between children/adolescents with asthma and their caregivers. Previous studies4747 Williams J, Williams K. Asthma-specific quality of life questionnaires in children: are they useful and feasible in routine clinical practice?. Pediatr Pulmonol. 2003;35(2):114-118. https://doi.org/10.1002/ppul.10206
https://doi.org/10.1002/ppul.10206...
,5151 Guyatt GH, Juniper EF, Griffith LE, Feeny DH, Ferrie PJ. Children and adult perceptions of childhood asthma. Pediatrics. 1997;99(2):165-168. https://doi.org/10.1542/peds.99.2.165
https://doi.org/10.1542/peds.99.2.165...
have shown that activity limitation assessment is affected by the fact that caregivers tend to assign lower activity limitation domain scores to asthma patients than do the patients themselves. With regard to total HRQoL scores, no significant differences were found between children/adolescents with asthma and their caregivers.

HRQoL questionnaires play an important role in assessing the health status of children and adolescents with asthma. However, the level of agreement between children/adolescents with asthma and their caregivers regarding HRQoL was found to range from low to moderate. Of the 33 studies included in the present review, 6 were aimed at correlating the QoL of children with that of their caregivers.1616 Ahmed PA, Ulonnam CC, Mohammed-Nafi'u R. Assessment of quality of life among children with bronchial asthma and their caregivers at the National Hospital Abuja, Nigeria. Niger J Paediatr. 2016;43(2):88-94. https://doi.org/10.4314/njp.v43i2.5
https://doi.org/10.4314/njp.v43i2.5...
,3333 Minard JP, Thomas N, Olajos-Clos J, Juniper EF, Jiang X, Jenkins B, et al. Burden Of Childhood Asthma: Relationship Between Pediatric And Caregiver Electronic Quality Of Life Questionnaires. ATS. 2011:A1435. https://doi.org/10.1164/ajrccm-conference.2011.183.1_MeetingAbstracts.A1435
https://doi.org/10.1164/ajrccm-conferenc...
,3838 Nair S, Nair S, Sundaram KR. A prospective study to assess the quality of life in children with asthma using the pediatric asthma quality of life questionnaire. Indian J Allergy Asthma Immunol. 2014;28(1):13-18. https://doi.org/10.4103/0972-6691.134210
https://doi.org/10.4103/0972-6691.134210...
,3939 Ovšonková A, Plavnická I, Jeseňák M. The quality of life of parents and children with asthma bronchial. Ošetřovatelství a porodní asistence. 2012;3(3):424-432.,4747 Williams J, Williams K. Asthma-specific quality of life questionnaires in children: are they useful and feasible in routine clinical practice?. Pediatr Pulmonol. 2003;35(2):114-118. https://doi.org/10.1002/ppul.10206
https://doi.org/10.1002/ppul.10206...
,5252 Burks ML, Brooks EG, Hill VL, Peters JI, Wood PR. Assessing proxy reports: agreement between children with asthma and their caregivers on quality of life [published correction appears in Ann Allergy Asthma Immunol. 2013;111(4):309]. Ann Allergy Asthma Immunol. 2013;111(1):14-19. https://doi.org/10.1016/j.anai.2013.05.008
https://doi.org/10.1016/j.anai.2013.05.0...
Nair et al.3838 Nair S, Nair S, Sundaram KR. A prospective study to assess the quality of life in children with asthma using the pediatric asthma quality of life questionnaire. Indian J Allergy Asthma Immunol. 2014;28(1):13-18. https://doi.org/10.4103/0972-6691.134210
https://doi.org/10.4103/0972-6691.134210...
correlated the QoL of children with asthma and that of their parents with asthma treatment. In 69 children in the 7- to 17-year age bracket, asthma treatment had no impact on the scores on the emotional function domain of the PAQLQ, and caregivers failed to understand the psychological effects of asthma on their children. In addition, asthma treatment had no impact on PACQLQ scores.

Minard et al.3333 Minard JP, Thomas N, Olajos-Clos J, Juniper EF, Jiang X, Jenkins B, et al. Burden Of Childhood Asthma: Relationship Between Pediatric And Caregiver Electronic Quality Of Life Questionnaires. ATS. 2011:A1435. https://doi.org/10.1164/ajrccm-conference.2011.183.1_MeetingAbstracts.A1435
https://doi.org/10.1164/ajrccm-conferenc...
studied 63 children in the 7- to 17-year age bracket, comparing the original versions of the PAQLQ and PACQLQ with their electronic versions and correlating PAQLQ scores with PACQLQ scores; the authors demonstrated the validity of the electronic versions of the questionnaires and the relationship between children/adolescents and their caregivers. In addition, they found no changes in activity limitations or symptoms.

Burks et al.2020 Burks ML, Brooks EG, Hill VL, Peters JI, Wood PR. Assessing proxy reports: agreement between children with asthma and their caregivers on quality of life [published correction appears in Ann Allergy Asthma Immunol. 2013;111(4):309]. Ann Allergy Asthma Immunol. 2013;111(1):14-19. https://doi.org/10.1016/j.anai.2013.05.008
https://doi.org/10.1016/j.anai.2013.05.0...
studied 79 patients in the 5- to 17-year age bracket and their caregivers, assessing the level of agreement between PAQLQ and PACQLQ scores. The scores were similar, with a moderate correlation between emotional function and overall QoL; however, children/adolescents had higher (better) activity limitation domain scores than those assigned by their caregivers (4.62 vs. 3.49; p < 0.001), a finding that suggests that QoL parameters should be assessed in both pediatric patients and their caregivers.

In a study involving 43 children/adolescents in the 7- to 16-year age bracket with varying levels of asthma severity,1616 Ahmed PA, Ulonnam CC, Mohammed-Nafi'u R. Assessment of quality of life among children with bronchial asthma and their caregivers at the National Hospital Abuja, Nigeria. Niger J Paediatr. 2016;43(2):88-94. https://doi.org/10.4314/njp.v43i2.5
https://doi.org/10.4314/njp.v43i2.5...
activity limitation domain scores were found to be more severely affected in girls than in boys and in children/adolescents with severe/uncontrolled asthma than in those with less severe asthma. In addition, a significant positive correlation was found between total QoL scores and emotional function domain scores (4.98 vs. 4.86; p = 0.015). Williams & Williams4747 Williams J, Williams K. Asthma-specific quality of life questionnaires in children: are they useful and feasible in routine clinical practice?. Pediatr Pulmonol. 2003;35(2):114-118. https://doi.org/10.1002/ppul.10206
https://doi.org/10.1002/ppul.10206...
found a low correlation between the overall scores of children/adolescents and those of their caregivers (r = 0.19; p = 0.18), as well as no correlation between the QoL scores of the children/adolescents and the judgment of the clinician in charge regarding asthma control (r = 0.02; p = 0.98). The authors also found a low correlation between the activity limitation domain scores achieved by the children/adolescents and those assigned by their caregivers (r = 0.01; p = 0.45); the children/adolescents reported less limitation in activities than did their caregivers (4.8 vs. 4.1). Szabó et al.4141 Szabó A, Mezei G, Kovári E, Cserháti E. Depressive symptoms amongst asthmatic children's caregivers. Pediatr Allergy Immunol. 2010;21(4 Pt 2):e667-e673. https://doi.org/10.1111/j.1399-3038.2009.00896.x
https://doi.org/10.1111/j.1399-3038.2009...
reported that caregivers of children/adolescents with asthma have at least mild depressive symptoms and tend to have increased symptoms of anxiety.

The present meta-analysis showed high heterogeneity across studies in an analysis stratified by study design (within-group comparisons). Considerable variability was found across studies, as is often the case in systematic reviews. Because asthma is multifactorial and the prevalence of asthma varies widely (2-33%), high heterogeneity is expected. In addition, factors such as study design, disease severity, geographic location, and socioeconomic status can increase heterogeneity.

Ovšonková et al.3939 Ovšonková A, Plavnická I, Jeseňák M. The quality of life of parents and children with asthma bronchial. Ošetřovatelství a porodní asistence. 2012;3(3):424-432. showed that the level of asthma control has a statistically significant impact on the QoL of children/adolescents with asthma and on that of their caregivers, a better QoL in asthma patients translating to a better QoL in their caregivers. Voorend-van Bergen et al.4545 Voorend-van Bergen S, Vaessen-Verberne AA, Landstra AM, Brackel HJ, van den Berg NJ, Caudri D, et al. Monitoring childhood asthma: web-based diaries and the asthma control test. J Allergy Clin Immunol. 2014;133(6):1599-605.e2. https://doi.org/10.1016/j.jaci.2013.10.005
https://doi.org/10.1016/j.jaci.2013.10.0...
examined the validity of a Web-based diary in assessing asthma control in children/adolescents in the 4- to 18-year age bracket; for those under 12 years of age, the diary was completed by the caregivers. In that age group, the median PACQLQ score was 6.5, whereas, among adolescents, the mean PAQLQ score was slightly lower (6.2), PACQLQ and PAQLQ scores being significantly higher in children/adolescents with well-controlled asthma than in those with partly controlled or uncontrolled asthma (p < 0.001).5353 Kew KM, Carr R, Crossingham I. Lay-led and peer support interventions for adolescents with asthma. Cochrane Database Syst Rev. 2017;4(4):CD012331. https://doi.org/10.1002/14651858.CD012331.pub2
https://doi.org/10.1002/14651858.CD01233...

Although every effort was made to minimize bias, the present study has some limitations. Because the results of the studies included in our meta-analysis were obtained by using subjective tools (HRQoL questionnaires), there is a possibility of recall bias. In addition, there is a possibility that patient age and level of education affected their understanding of the questions. Furthermore, there were differences across studies regarding the time elapsed between questionnaire administration and intervention implementation. Moreover, none of the included studies assessed the time spent by caregivers in the caregiving role; for example, children in whom symptoms are more severe tend to receive more attention and care from their caregivers.3737 Mussaffi H, Omer R, Prais D, Mei-Zahav M, Weiss-Kasirer T, Botzer Z, et al. Computerised paediatric asthma quality of life questionnaires in routine care. Arch Dis Child. 2007;92(8):678-682. https://doi.org/10.1136/adc.2006.111971
https://doi.org/10.1136/adc.2006.111971...

Our meta-analysis clearly showed that asthma can affect emotional function domain scores in patients and caregivers, the two groups differing in their perception of their emotional function. However, there were no differences between the two groups regarding activity limitation domain scores and total scores. Therefore, pediatric asthma patients and their families should be closely monitored, with special attention being given to the impact of asthma on their psychological and emotional functioning.

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  • Financial support:

    None.
  • 2
    Study carried out at the Universidade Regional do Noroeste do Estado do Rio Grande do Sul - UNIJUI - Ijuí (RS) Brasil.

Publication Dates

  • Publication in this collection
    22 Apr 2020
  • Date of issue
    2020

History

  • Received
    19 Mar 2019
  • Accepted
    18 July 2019
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