Advances in Clinical and Experimental Medicine

Title abbreviation: Adv Clin Exp Med
JCR Impact Factor (IF) – 1.736
5-Year Impact Factor – 2.135
Index Copernicus  – 168.52
MEiN – 70 pts

ISSN 1899–5276 (print)
ISSN 2451-2680 (online)
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Advances in Clinical and Experimental Medicine

2015, vol. 24, nr 3, May-June, p. 487–495

doi: 10.17219/acem/24991

Publication type: original article

Language: English

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Health Related Quality of Life of Children with Chronic Respiratory Conditions

Réka Bodnár1,2,A,B,C,D, László Kádár3,A,E, László Szabó4,A,E, Márton Hernádi1,B, Márió Mikóczi1,C, Ágnes Mészáros2,A,D,E

1 Department of Medicine, Heim Pal Children’s Hospital, Budapest, Hungary

2 University Pharmacy Institute of Pharmacy Administration, Semmelweis University, Budapest, Hungary

3 Department of Pediatrics, Pulmonological Institute, Törökbálint, Hungary

4 Department of Family Care Methodology, Institute of Health Science, Semmelweis University, Budapest, Hungary


Background. In the management of chronic diseases, treatment approaches have changed in recent decades. Not only are clinical outcomes assessed but also the patients’ perception of their quality of life has become an important aspect.
Objectives. The aim of our study was to compare the health-related quality of life (HRQoL) of children with cystic fibrosis (CF) to the HRQoL of asthmatic patients, to assess the level of agreement between parent proxy-report and child self-report and to measure the relationship between spirometry and HRQoL.
Material and Methods. 172 children (mean age: 11.61 ± 2.56 years) and their parents completed the questionnaire. The Hungarian version of the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM 4.0) Generic Core Scale was used to assess HRQoL. Lung function was assessed via spirometry.
Results. Significantly lower PedsQLTM scores were measured for CF patients on the psychosocial health (p < 0.05), emotional functioning (p < 0.005) and school functioning (p < 0.01) subscales and the total scale (p < 0.05) from the children’s self-report. The level of child-parent agreement was fair and moderate in both patient populations [intra-class correlation coefficient range (ICC) asthma = 0.29–0.37; ICCCF = 0.39–0.59, p < 0.001]. The relationship between forced expiratory volume in 1 second (FEV1) and the physical health subscale (r = 0.49, p < 0.01) was moderate in young (8–12 years) children and also teenagers (13–18 years), with CF (r = 0.58, p < 0.05) from self-report. We found weak, non-significant correlations between FEV1 and PedsQLTM subscales in children with asthma (8–12 years) (r = –0.01–0.18, ns.).
Conclusion. Children suffering from CF perceive their HRQoL as poorer than children with asthma. In asthmatic patients, it is not sufficient to evaluate clinical outcomes (FEV1); subjective HRQoL should be also estimated in the course of patient care.

Key words

quality of life, child, asthma, cystic fibrosis, spirometry.

References (30)

  1. Varni JW, Seid M, Kurtin PS: PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001, 39, 800–812.
  2. Quittner AL, Modi A, Cruz I: Systematic review of health-related quality of life measures for children with respiratory conditions. Paediatr Respir Rev 2008, 9, 220–232.
  3. Juniper EF: How important is quality of life in pediatric asthma? Pediatr Pulmonol Suppl 1997, 15, 17–21.
  4. Kuźniar T, Ślusarz R, Patkowski J: Quality of life in patients with asthma. Adv Clin Exp Med 1999, 8, 2.
  5. O’Byrne PM, Reddel HK, Eriksson G, Ostlund O, Peterson S, Sears MR, Jenkins C, Humbert M, Buhl R, Harrison TW, Quirce S, Bateman ED: Measuring asthma control: a comparison of three classification systems. Eur Respir J 2010, 36, 269–276.
  6. Bateman ED, Boushey HA, Bousquet J, Busse WW, Clark TJ, Pauwels RA, Pedersen SE: Can guideline-defined asthma control be achieved? The Gaining Optimal Asthma ControL study. Am J Respir Crit Care Med 2004,170, 836–844.
  7. Juniper EF, Bousquet J, Abetz L, Bateman ED: Identifying ‘well-controlled’ and ‘not well-controlled’ asthma using the Asthma Control Questionnaire. Respir Med 2006, 100, 616–621.
  8. Bedouch P, Marra CA, Fitzgerald JM, Lynd LD, Sadatsafavi M: Trends in asthma-related direct medical costs from 2002 to 2007 in British Columbia, Canada: a population based-cohort study. PLoS One 7 (12):e50949.
  9. Bahadori K, Doyle-Waters MM, Marra C, Lynd L, Alasaly K, Swiston J, FitzGerald JM: Economic burden of asthma: a systematic review. BMC Pulm Med 2009, 9, 24.
  10. Lieu TA, Ray GT, Farmer G, Shay GF: The cost of medical care for patients with cystic fibrosis in a health maintenance organization. Pediatrics 1999, 103, e72.
  11. Quittner AL: Measurement of quality of life in cystic fibrosis. Curr Opin Pulm Med 1998, 4, 326–331.
  12. Abbott J, Webb K, Dodd M: Quality of life in cystic fibrosis. J R Soc Med 1997, Suppl 31, 37–42.
  13. 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.
  14. Varni JW, Seid M, Rode CA: The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999, 37, 126–139.
  15. Varni JW, Seid M, Knight TS, Uzark K, Szer IS: The PedsQL 4.0 Generic Core Scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med 2002, 25, 175–193.
  16. Chan KS, Mangione-Smith R, Burwinkle TM, Rosen M, Varni JW: The PedsQL: reliability and validity of the short-form generic core scales and Asthma Module. Med Care 2005, 43, 256–265.
  17. Varni JW, Limbers CA: The PedsQL 4.0 Generic Core Scales Young Adult Version: feasibility, reliability and validity in a university student population. J Health Psychol 2009, 14, 611–622.
  18. Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N: The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory generic core scales and asthma module. J Behav Med 2004, 27, 297–318.
  19. Varni JW, Burwinkle TM, Seid M, Skarr D: The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003, 3, 329–341.
  20. Polgar S, Thomas S: Correlation. In: Introduction to research in the health sciences. Eds: Polgar S, Thomas S, Churchill Livingstone, Melbourne 1995, 1st ed., 237–253.
  21. Eiser C, Morse R: Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10, 347–357.
  22. Landis JR, Koch GG: The measurement of observer agreement for categorical data. Biometrics 1977, 33, 159–174.
  23. Berkes A, Varni JW, Pataki I, Kardos L, Kemeny C, Mogyorosy G: Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the Pediatric Quality of Life Inventory. Eur J Pediatr 2010, 169, 333–347.
  24. Davis KJ, Disantostefano R, Peden DB: Is Johnny wheezing? Parent-child agreement in the Childhood Asthma in America survey. Pediatr Allergy Immunol 2011, 22, 31–35.
  25. Britto MT, Kotagal UR, Chenier T, Tsevat J, Atherton HD, Wilmott RW: Differences between adolescents’ and parents’ reports of health-related quality of life in cystic fibrosis. Pediatr Pulmonol 2004, 37, 165–171.
  26. Riley AW: Evidence that school-age children can self-report on their health. Ambul Pediatr 2004, 4 371–376.
  27. Ziaian T, Sawyer MG, Reynolds KE, Carbone JA, Clark JJ, Baghurst PA, Couper JJ, Kennedy D, Martin AJ, Staugas RE, French DJ: Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma. J Paediatr Child Health 2006, 42, 596–600.
  28. Abbott J, Gee L: Quality of life in children and adolescents with cystic fibrosis: implications for optimizing treatments and clinical trial design. Paediatr Drugs 2003, 5, 41–56.
  29. Cremeens J, Eiser C, Blades M: Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006, 4, 58.
  30. Vila G, Hayder R, Bertrand C, Falissard B, De Blic J, Mouren-Simeoni MC, Scheinmann P: Psychopathology and quality of life for adolescents with asthma and their parents. Psychosomatics 2003, 44, 319–328.