Quality of Life Research

, Volume 23, Issue 3, pp 939–951 | Cite as

Quality of life for parents of children with influenza-like illness: development and validation of Care-ILI-QoL

  • Maria Yui Kwan ChowEmail author
  • Angela Morrow
  • Leon Heron
  • Jiehui Kevin Yin
  • Robert Booy
  • Julie Leask



Influenza-like illnesses (ILI) cause paediatric morbidity and affect the quality of life (QoL) of children and their parents. We have developed a disease-specific questionnaire (Care-ILI-QoL) to measure the QoL of caregivers of children with ILI.


The drafting of the Care-ILI-QoL questionnaire was based on a systematic review, a quantitative survey, qualitative interviews with parents, and meetings with paediatricians. Children aged 6–48 months recruited from childcare centres in Sydney, Australia, were followed up during the 2011 influenza season. Care-ILI-QoL and SF-12v2 Acute Form were administered to the parent of a sick child 2 weeks after the onset of ILI, and again 2 weeks after the child had recovered. Exploratory factor analysis was conducted. Internal consistency, concurrent validity, discriminant validity, homogeneity of items, and responsiveness were tested.


Out of the 125 children enrolled from 48 childcare centres, 55 children had ILI (total 75 ILI episodes). Care-ILI-QoL was reduced from 25 to 16 items covering four factors: Daily Activities, Perceived Support, Social Life, and Emotions (Cronbach’s alphas 0.90, 0.92, 0.78, and 0.72, respectively). Care-ILI-QoL has satisfactory concurrent and discriminant validity, good internal consistency, and excellent responsiveness. Total QoL and factor scores correlated well with SF-12v2 scores. Total QoL scores were significantly lower in parents who perceived their child as very/extremely sick, sacrificed 10 hours or more in work or recreation in caring for the child, or whose child had two or more general practitioner visits. Total QoL and factor scores were significantly higher after the child had recovered than when the child had ILI.


Care-ILI-QoL is the first ILI-specific QoL instrument for parents and is demonstrated to be valid and reliable in a developed country setting where the child is affected by ILI. It has the potential to be applied in clinical and research settings to assist measurement of disease burden, as a needs assessment tool for resources or to inform policy changes.


Questionnaire Influenza-like illness Quality of life Parent Child 



We gratefully acknowledge the assistance of Laura Rost, Lisa Chalmers, Helen Knight, Kate Park, Elizabeth Clarke, and Karla Villafana-Soto in recruitment and data collection. We also thank the participating families, KU Children’s Services staff for their assistance, and Belinda Barton and Robin Turner for advice on statistical analysis. We thank the peer reviewers and editor for their constructive comments.

Conflict of interest

The National Centre for Immunisation Research and Surveillance of Vaccine Preventable Diseases is supported by the Australian Government Department of Health and Ageing, the New South Wales Department of Health, and The Children’s Hospital at Westmead. Dr Heron has performed consultancy work for Novartis and has had travel expenses paid by GSK and Sanofi Pasteur and has conducted sponsored research and investigator-driven research with funding from GSK, Pfizer, Merck, CSL, Roche, and Sanofi Pasteur. All payments were made to the National Centre for Immunisation Research and Surveillance. Prof. Booy received payments from CSL, Roche, Sanofi Pasteur, GlaxoSmithKline, and Pfizer for travelling to scientific meetings, and honoraria for speaking are redirected to a University of Sydney account. The other authors declared no conflict of interest.


  1. 1.
    Heikkinen, T., Silvennoinen, H., Peltola, V., Ziegler, T., Vainionpaa, R., Vuorinen, T., et al. (2004). Burden of influenza in children in the community. Journal of Infectious Diseases, 190(8), 1369–1373.PubMedCrossRefGoogle Scholar
  2. 2.
    Iskander, M., Kesson, A., Dwyer, D., Rost, L., Pym, M., Wang, H., et al. (2009). The burden of influenza in children under 5 years admitted to the Children’s Hospital at Westmead in the winter of 2006. Journal of Paediatrics and Child Health, 45(12), 698–703.PubMedCrossRefGoogle Scholar
  3. 3.
    Munoz, F. M. (2002). The impact of influenza in children. Seminars in Pediatric Infectious Diseases, 13(2), 72–78.PubMedCrossRefGoogle Scholar
  4. 4.
    O’Brien, M. A., Uyeki, T. M., Shay, D. K., Thompson, W. W., Kleinman, K., McAdam, A., et al. (2004). Incidence of outpatient visits and hospitalizations related to influenza in infants and young children. Pediatrics, 113(3 Pt 1), 585–593.PubMedCrossRefGoogle Scholar
  5. 5.
    Nair, H., Brooks, W. A., Katz, M., Roca, A., Berkley, J. A., Madhi, S. A., et al. (2011). Global burden of respiratory infections due to seasonal influenza in young children: A systematic review and meta-analysis. Lancet, 378(9807), 1917–1930.PubMedCrossRefGoogle Scholar
  6. 6.
    Newall, A. T., & Scuffham, P. A. (2008). Influenza-related disease: The cost to the Australian healthcare system. Vaccine, 26(52), 6818–6823.PubMedCrossRefGoogle Scholar
  7. 7.
    Nicholson, K. G., Wood, J. M., & Zambon, M. (2003). Influenza. Lancet, 362(9397), 1733–1745.PubMedCrossRefGoogle Scholar
  8. 8.
    Iskander, M., Booy, R., & Lambert, S. (2007). The burden of influenza in children. Current Opinion in Infectious Diseases, 20(3), 259–263.PubMedCrossRefGoogle Scholar
  9. 9.
    Poehling, K. A., Edwards, K. M., Weinberg, G. A., Szilagyi, P., Staat, M. A., Iwane, M. K., et al. (2006). The underrecognized burden of influenza in young children. New England Journal of Medicine, 355(1), 31–40.PubMedCrossRefGoogle Scholar
  10. 10.
    Yin, J. K., Salkeld, G., Lambert, S. B., Dierig, A., Heron, L., Leask, J., et al. (2013). Estimates and determinants of economic impacts from influenza-like illnesses caused by respiratory viruses in Australian children attending childcare: A cohort study. Influenza and Other Respiratory Viruses. doi: 10.1111/irv.12138.
  11. 11.
    World Health Organization. (2003). WHO definition of health. Accessed 13 Feb.
  12. 12.
    Chow, M. Y., Morrow, A. M., Cooper Robbins, S. C., & Leask, J. (2013). Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: A systematic review. Quality of Life Research . doi: 10.1007/s11136-012-0343-z.
  13. 13.
    Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, S., Herdman, M., et al. (2008). Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value in Health, 11(4), 742–764.PubMedCrossRefGoogle Scholar
  14. 14.
    Leidy, N. K., Revicki, D. A., & Geneste, B. (1999). Recommendations for evaluating the validity of quality of life claims for labeling and promotion. Value in Health, 2(2), 113–127.PubMedCrossRefGoogle Scholar
  15. 15.
    Drummond, M. F., O’Brien, B. J., Stoddard, G. L., & Torrance, G. W. (1997). Methods for the Economic Evaluation of Health Care Programs (2nd ed.). Toronto: Oxford Medical Publications.Google Scholar
  16. 16.
    Pickard, A. S., Topfer, L. A., & Feeny, D. H. (2004). A structured review of studies on health-related quality of life and economic evaluation in pediatric acute lymphoblastic leukemia. Journal of the National Cancer Institute, 33, 102–125.PubMedCrossRefGoogle Scholar
  17. 17.
    Chow, M. Y., Morrow, A. M., Booy, R., & Leask, J. (2013). The impact of children’s influenza-like-illnesses on parental quality of life: A qualitative study. Journal of Paediatrics and Child Health, 49(8), 664–670.PubMedCrossRefGoogle Scholar
  18. 18.
    Esposito, S., Gasparini, R., Bosis, S., Marchisio, P., Tagliabue, C., Tosi, S., et al. (2005). Clinical and socio-economic impact of influenza and respiratory syncytial virus infection on healthy children and their households. Clinical Microbiology and Infectious Diseases, 11(11), 933–936.CrossRefGoogle Scholar
  19. 19.
    Lambert, S., O’Grady, K. A., Gabriel, S., Carter, R., & Nolan, T. (2004). The cost of seasonal respiratory illnesses in Australian children: The dominance of patient and family costs and implications for vaccine use. Communicable Diseases Intelligence, 28(4), 510–516.Google Scholar
  20. 20.
    Tsolia, M. N., Logotheti, I., Papadopoulos, N. G., Mavrikou, M., Spyridis, N. P., Drossatou, P., et al. (2006). Impact of influenza infection in healthy children examined as outpatients and their families. Vaccine, 24(33–34), 5970–5976.PubMedCrossRefGoogle Scholar
  21. 21.
    Szucs, T. (1999). The socio-economic burden of influenza. Journal of Antimicrobial Chemotherapy, 44(Suppl B), 11–15.Google Scholar
  22. 22.
    Lambert, S. B., Allen, K. M., Carter, R. C., & Nolan, T. M. (2008). The cost of community-managed viral respiratory illnesses in a cohort of healthy preschool-aged children. Respiratory Research, 9, 11.PubMedCentralPubMedCrossRefGoogle Scholar
  23. 23.
    Ware, J. E., Jr, & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). Conceptual framework and item selection. Medical Care, 30(6), 473–483.PubMedCrossRefGoogle Scholar
  24. 24.
    World Health Organization. (1996). WHOQOL-BREF: Introduction, administrations, scoring and generic version of the assessment. Accessed 26 Mar 2012.
  25. 25.
    Papaioannou, D., Brazier, J., & Parry, G. (2011). How valid and responsive are generic health status measures, such as EQ-5D and SF-36, in schizophrenia? A systematic review. Value in Health, 14(6), 907–920.PubMedCentralPubMedCrossRefGoogle Scholar
  26. 26.
    Medical Outcomes Trust. (2013).—A community for measuring health outcomes using SF tools. Accessed 31 Jan.
  27. 27.
    O’Connor, R. (2004). Measuring quality of life in health (1st ed.). Sydney: Churchill Livingstone.Google Scholar
  28. 28.
    Wiebe, S., Guyatt, G., Weaver, B., Matijevic, S., & Sidwell, C. (2003). Comparative responsiveness of generic and specific quality-of-life instruments. Journal of Clinical Epidemiology, 56(1), 52–60.PubMedCrossRefGoogle Scholar
  29. 29.
    Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL[trademark] family impact module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55.PubMedCentralPubMedCrossRefGoogle Scholar
  30. 30.
    Dube, E., De Wals, P., & Ouakki, M. (2010). Quality of life of children and their caregivers during an AOM episode: Development and use of a telephone questionnaire. Health and Quality of Life Outcomes, 8, 75.PubMedCentralPubMedCrossRefGoogle Scholar
  31. 31.
    Berdeaux, G., Hervie, C., Smajda, C., & Marquis, P. (1998). Parental quality of life and recurrent ENT infections in their children: Development of a questionnaire. Rhinitis Survey Group. Quality of Life Research, 7(6), 501–512.PubMedCrossRefGoogle Scholar
  32. 32.
    Australian New Zealand Clinical Trials Registry. (2007). Paediatric Influenza Vaccine Outcome Trial (PIVOT). Accessed 13 Feb.
  33. 33.
    Chow, M. Y., Leask, J., Yin, J. K., Heron, L., Morrow, A. M., Dierig, A., et al. (2013). The impact of influenza-like-illness in young children on their parents: A quality of life survey. Quality of Life Research, Under review (unpublished data).Google Scholar
  34. 34.
    Ware, J. E., Kosinski, M., Turner-Bowker, D. M., & Gandek, B. (2002). User’s manual for the SF-12v2 Health Survey with a supplement documenting SF-12 Health Survey. Lincoln, RI: QualityMetric Incorporated.Google Scholar
  35. 35.
    Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing Company.Google Scholar
  36. 36.
    Streiner, D. L., & Norman, G. R. (2008). Health Measurement Scales-a practical guide to their development and use (4th ed.). New York: Oxford University Press.Google Scholar
  37. 37.
    Dupont, W. D., & Plummer, W. D. (2009). PS power and sample size calculations software version 3.0. Accessed 4 Feb 2011.
  38. 38.
    Yin, J. K., Lahra, M. M., Iskander, M., Lambert, S. B., Heron, L., Nissen, M. D., et al. (2011). Pilot study of influenza vaccine effectiveness in urban Australian children attending childcare. Journal of Paediatrics and Child Health, 47(12), 857–862.PubMedCrossRefGoogle Scholar
  39. 39.
    Keller, S. D., Bayliss, M. S., Ware, J. E., Jr., Hsu, M. A., Damiano, A. M., & Goss, T. F. (1997). Comparison of responses to SF-36 Health Survey questions with one-week and four-week recall periods. Health Services Research, 32(3), 367–384.PubMedCentralPubMedGoogle Scholar
  40. 40.
    Morris, C., & Bartlett, D. (2004). Gross motor function classification system: Impact and utility. Developmental Medicine and Child Neurology, 46(1), 60–65.PubMedCrossRefGoogle Scholar
  41. 41.
    Nandakumar, R., & Ackerman, T. (2004). The SAGE handbook of quantitative methodology for the social sciences (pp. 93–105). Thousand Oaks, CA: SAGE Publications.Google Scholar
  42. 42.
    Tabachnick, B. G., & Fidell, L. S. (2007). Using multivariate statistics (5th ed.). Boston, MA: Pearson Education.Google Scholar
  43. 43.
    COSMIN. (2012). Accessed 13 Nov 2012.
  44. 44.
    Walters, S. J. (2009). Quality of life outcomes in clinical trials and health-care evaluation: A practical guide to analysis and interpretation. Chichester, UK: Wiley.CrossRefGoogle Scholar
  45. 45.
    Kaiser, H. F. (1974). An index of factorial simplicity. Psychometrika, 39(1), 31–36.CrossRefGoogle Scholar
  46. 46.
    Pallant, J. (2007). SPSS survival manual: A step by step guide to data analysis using SPSS (3rd ed., p. 181). Sydney, Australia: Allen & Unwin.Google Scholar
  47. 47.
    Cohen, B. L., Noone, S., Munoz-Furlong, A., & Sicherer, S. H. (2004). Development of a questionnaire to measure quality of life in families with a child with food allergy. Journal of Allergy and Clinical Immunology, 114(5), 1159–1163.PubMedCrossRefGoogle Scholar
  48. 48.
    Farnik, M., Brozek, G., Pierzchala, W., Zejda, J. E., Skrzypek, M., & Walczak, L. (2010). Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease. Health and Quality of Life Outcomes, 8, 151.PubMedCentralPubMedCrossRefGoogle Scholar
  49. 49.
    Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E., & Townsend, M. (1996). Measuring quality of life in the parents of children with asthma. Quality of Life Research, 5(1), 27–34.PubMedCrossRefGoogle Scholar
  50. 50.
    Weitzner, M. A., Jacobsen, P. B., Wagner, H., Jr, Friedland, J., & Cox, C. (1999). The Caregiver Quality of Life Index-Cancer (CQOLC) scale: Development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of Life Research, 8(1–2), 55–63.PubMedCrossRefGoogle Scholar
  51. 51.
    Boling, W., Macrina, D. M., & Clancy, J. P. (2003). The Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale: Modification and validation of an instrument to measure quality of life in cystic fibrosis family caregivers. Quality of Life Research, 12(8), 1119–1126.PubMedCrossRefGoogle Scholar
  52. 52.
    Cappelleri, J. C., Gerber, R. A., Quattrin, T., Deutschmann, R., Luo, X., Arbuckle, R., et al. (2008). Development and validation of the WEll-being and Satisfaction of CAREgivers of children with diabetes questionnaire (WE-CARE). Health and Quality of Life Outcomes, 6, 3.PubMedCentralPubMedCrossRefGoogle Scholar
  53. 53.
    Basra, M. K., Sue-Ho, R., & Finlay, A. Y. (2007). The family dermatology life quality index: Measuring the secondary impact of skin disease. British Journal of Dermatology, 156(3), 528–538.PubMedCrossRefGoogle Scholar
  54. 54.
    McKenna, S. P., Whalley, D., Dewar, A. L., Erdman, R. A. M., Kohlmann, T., Niero, M., et al. (2005). International development of the Parents’ Index of Quality of Life in Atopic Dermatitis (PIQoL-AD). Quality of Life Research, 14(1), 231–241.PubMedCrossRefGoogle Scholar
  55. 55.
    Mazer, P., Gischler, S. J., Koot, H. M., Tibboel, D., van Dijk, M., & Duivenvoorden, H. J. (2008). Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis. Health and Quality of Life Outcomes, 6, 102.PubMedCentralPubMedCrossRefGoogle Scholar
  56. 56.
    Kline, P. (1994). An easy guide to factor analysis. New York: Routledge.Google Scholar
  57. 57.
    Norman, G. R., & Streiner, D. L. (2008). Biostatistics: The bare essentials (3rd ed.). Shelton, Conn: People’s Medical Publication House.Google Scholar
  58. 58.
    Bachmann, C., Ackmann, C., Janhsen, E., Steuber, C., Bachmann, H., & Lehr, D. (2010). Clinical evaluation of the short-form pediatric enuresis module to assess quality of life. Neurourology and Urodynamics, 29(8), 1397–1402.PubMedCrossRefGoogle Scholar
  59. 59.
    Camfield, C., Breau, L., & Camfield, P. (2001). Impact of pediatric epilepsy on the family: A new scale for clinical and research use. Epilepsia, 42(1), 104–112.PubMedCrossRefGoogle Scholar
  60. 60.
    Hatt, S. R., Leske, D. A., Yamada, T., Bradley, E. A., Cole, S. R., & Holmes, J. M. (2010). Development and initial validation of quality-of-life questionnaires for intermittent exotropia. Ophthalmology, 117(1), 163–168.PubMedCentralPubMedCrossRefGoogle Scholar
  61. 61.
    Jastrowski Mano, K. E., Khan, K. A., Ladwig, R. J., & Weisman, S. J. (2011). The impact of pediatric chronic pain on parents’ health-related quality of life and family functioning: Reliability and validity of the PedsQL 4.0 Family Impact Module. Journal of Pediatric Psychology, 36(5), 517–527.Google Scholar
  62. 62.
    Rudraraju, R., Jones, B. G., Sealy, R., Surman, S. L., & Hurwitz, J. L. (2013). Respiratory syncytial virus: Current progress in vaccine development. Viruses, 5(2), 577–594.PubMedCentralPubMedCrossRefGoogle Scholar
  63. 63.
    Young, T. (2011). Using PRO data to generate QALYS: Deriving preference-based single index measures from existing measures (Workshop). The International Society of Quality of Life Research 18th Annual Conference; Denver, CO, US.Google Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Maria Yui Kwan Chow
    • 1
    • 2
    Email author
  • Angela Morrow
    • 2
    • 3
  • Leon Heron
    • 1
    • 2
  • Jiehui Kevin Yin
    • 1
    • 2
  • Robert Booy
    • 1
    • 2
  • Julie Leask
    • 1
    • 2
    • 4
  1. 1.National Centre for Immunisation Research and Surveillance (NCIRS), Kids Research InstituteThe Children’s Hospital at WestmeadSydneyAustralia
  2. 2.Discipline of Paediatrics and Child Health, Sydney Medical SchoolThe University of SydneySydneyAustralia
  3. 3.Kids RehabThe Children’s Hospital at WestmeadSydneyAustralia
  4. 4.School of Public Health, Sydney Medical SchoolThe University of SydneySydneyAustralia

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