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