Quality of Life in Healthy and Chronically Ill Icelandic Children: Agreement Between Child’s Self-Report and Parents’ Proxy-Report

  • E. K. Svavarsdottir
Reference work entry


The purpose of this chapter is to report on findings on level of agreement between 10 and 12-year-old healthy and chronically ill Icelandic pre-teenagers’ reports and their mothers’ and fathers’ proxy-reports on the children’s  health related quality of life (HRQOL) and to view the findings in the light of the international literature. The research is cross-sectional and was introduced to 1,079 children in 5th and 6th grade and their parents. Out of those, 480 children (209 boys and 271 girls) and 912 parents (510 mothers and 402 fathers) gave their written consent and participated in the study. Data were collected from March to early June 2004 in 12 randomly selected public elementary schools in Reykjavik, Iceland. Descriptive statistics and dependent t-test were used to answer the research questions and to test the hypotheses. The main findings were that Icelandic pre-teenagers’  self-report differed significantly from their mothers’ and fathers’ proxy-report on the social and school functioning subscales of the HRQOL measure, as well as on the overall HRQOL score. Further findings were that mothers of healthy children and both parents of chronically ill children differed significantly from their children in their perception of the physical functioning of the child. These findings emphasize that  parents’ proxy-report cannot be substituted for the pre-teenagers’ report on their own HRQOL. However, within the subscale of emotional functioning, the children and their parents were found to agree. Agreement was also found between fathers and their healthy children on the physical functioning subscale. This suggests that Icelandic parents can provide valid information on their children’s physical and emotional functioning, which can be used as a substitute for the children’s own response. Although parents’ proxy-report can only substitute a child’s self-report within the emotional and physical functioning subscale, a proxy-report can add needed and valid information regarding parents’ perspective on their pre-teenagers’ HRQOL.


School Functioning Emotional Functioning Functioning Subscale Physical Functioning Subscale Dual Parent Family 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:


health related quality of life


quality of life


  1. Annett RD, Bender BG, DuHamel TR, Lapidus J. (2003). J Asthma. 40: 577–587.PubMedCrossRefGoogle Scholar
  2. Bothwell JE, Dooley JM, Gordon KE, MacAuley A, Camfield PR, MacSween J. (2002). Clin Pediatr. 41: 105–109.CrossRefGoogle Scholar
  3. Chang PC, Yeh CH. (2005). Psychooncology. 14: 125–134.PubMedCrossRefGoogle Scholar
  4. Charron-Prochowinik D. (2002). J Pediatr Nurs. 17: 407–413.CrossRefGoogle Scholar
  5. Chen X, Sekine M, Hamanishi S, Yamagami T, Kagamimori S. (2005). Child Care Health Dev. 31: 433–439.PubMedCrossRefGoogle Scholar
  6. Cohen J. (1992). Psychol Bull. 112: 155–159.PubMedCrossRefGoogle Scholar
  7. Dalheim-Englund AC, Rydström I, Rasmussen BH, Möller C, Sandman PO. (2004). J Clin Nurs. 13: 386–395.PubMedCrossRefGoogle Scholar
  8. Epker J, Maddrey AM. (1998). Int J Rehabil Health. 4: 215–222.CrossRefGoogle Scholar
  9. Faulkner MS. (2003). Pediatr Nurs. 29: 362–368.PubMedGoogle Scholar
  10. Faulkner MS, Chang LI. (2007). J Pediatr Nurs. 22: 59–68.PubMedCrossRefGoogle Scholar
  11. Faulkner MS, Clark FS. (1998). Diabetes Educ. 24: 721–727.PubMedCrossRefGoogle Scholar
  12. Fiese BH, Wamboldt FS, Anbar RD. (2005). J Pediatr. 146: 171–176.PubMedCrossRefGoogle Scholar
  13. Guyatt GH, Juniper EF, Griffith LE, Feeny DH, Ferrie PJ. (1997). Pediatrics. 99: 165–168.PubMedCrossRefGoogle Scholar
  14. Hays RM, Valentine J, Haynes G, Geyer JR, Villareale N, Mckinstry B, Varni JW, Churchill, SS. (2006). J Palliat Med. 9: 716–728.PubMedCrossRefGoogle Scholar
  15. Janse AJ, Sinnema G, Uiterwaal CSPM, Kimpen JLL, Gemke RJBJ. (2005). Arch Dis Child. 90: 486–491.PubMedCrossRefGoogle Scholar
  16. Knowles RL, Griebsch I, Bull C, Brown J, Wren C, Dezateux C. (2007). Arch Dis Child. 92: 388–393.PubMedCrossRefGoogle Scholar
  17. Landolt MA, Grubenmann S, Meuli M. (2002). J Trauma. 53: 1146–1151.PubMedCrossRefGoogle Scholar
  18. Le Coq EM, Boeke AJ, Bezemer PD, Colland VT, van Eijk JT. (2000). Qual Life Res. 9: 625–636.PubMedCrossRefGoogle Scholar
  19. Markham C, Dean T. (2006). Int J Lang Commun Disord. 41: 189–212.PubMedCrossRefGoogle Scholar
  20. Mednick L, Cogen FR, Streisand R. (2004). Child Health Care. 33: 169–183.CrossRefGoogle Scholar
  21. Meuleners LB, Binns CW, Lee AH, Lower A. (2002). Child Care Health Dev. 28: 341–349.PubMedCrossRefGoogle Scholar
  22. Noyes J. (2007). J Adv Nurs. 58: 1–10.PubMedCrossRefGoogle Scholar
  23. Rydström I, Dalheim-Englund AC, Segesten K, Rasmussen BH. (2004). J Pediatr Nurs. 19: 85–94.PubMedCrossRefGoogle Scholar
  24. Sheppard L, Eiser C, Kingston J. (2005). Child Care Health Dev. 31: 137–142.PubMedCrossRefGoogle Scholar
  25. Simeoni MC, Sapin C, Antoniotti S, Auquier P. (2001). J Adolesc Health. 28: 288–294.PubMedCrossRefGoogle Scholar
  26. Svavarsdottir EK, Orlygsdottir B. (2006a). J Sch Nurs. 22: 178–185.PubMedCrossRefGoogle Scholar
  27. Svavarsdottir EK, Orlygsdottir B. (2006b). Scand J Caring Sci. 20: 209–215.PubMedCrossRefGoogle Scholar
  28. Tremolada M, Axia V, Pillon M, Scrimin S, Capello F, Zanesco L. (2005). J Pain Symptom Manage. 30: 544–552.PubMedCrossRefGoogle Scholar
  29. Ungar WJ, Mirabelli C, Cousins M, Boydell KM. (2006). Soc Sci Med. 63: 2354–2366.PubMedCrossRefGoogle Scholar
  30. Upton P, Maddocks A, Eiser C, Barnes PM, Williams J. (2005). Child Care Health Dev. 31: 409–415.PubMedCrossRefGoogle Scholar
  31. Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. (2004). J Behav Med. 27: 297–318.PubMedCrossRefGoogle Scholar
  32. Varni JW, Burwinkle TM, Seid M, Skarr D. (2003). Ambul Pediatr. 3: 329–341.PubMedCrossRefGoogle Scholar
  33. Varni JW, Seid M, Kurtin PS. (2001). Med Care. 39: 800–812.PubMedCrossRefGoogle Scholar
  34. Varni JW, Seid M, Knight TS, Uzark K, Szer IS. (2002). J Behav Med. 25: 175–193.PubMedCrossRefGoogle Scholar
  35. Varni JW, Seid M, Rode CA. (1999). Med Care. 37: 126–139.PubMedCrossRefGoogle Scholar
  36. Vila G, Hayder R, Bertrand C, Falissard B, de Blinc J, Mouren-Simeoni MC, Scheinmann P. (2003). Psychosomatics. 44: 319–328.PubMedCrossRefGoogle Scholar
  37. Whitney B. (2005). Fam Community Health. 28: 176–183.Google Scholar
  38. Williams J, Williams K. (2003). Pediatr Pulmonol. 35: 114–118.PubMedCrossRefGoogle Scholar
  39. Yeh CH, Chao, Hung LC. (2004a). Psychooncology. 13: 161–170.PubMedCrossRefGoogle Scholar
  40. Yeh CH, Hung LC. (2003). Psychooncology. 12: 345–356.PubMedCrossRefGoogle Scholar
  41. Yeh CH, Hung LC, Chao, KY. (2004b). Psychooncology. 13: 171–176.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • E. K. Svavarsdottir
    • 1
  1. 1.Faculty of NursingUniversity of IcelandEirbergiIceland

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