Health-related quality of life following pediatric critical illness

Purpose The aims of this focused review of the literature on children surviving critical illness were to (1) determine whether health-related quality of life (HRQL) represents a clinically meaningful outcome measure for children surviving critical illness and (2) evaluate the HRQL measures implemented in pediatric critical care studies to date. Methods This was a focused review of the literature from 1980 to 2015 based on a search of EMBASE/PubMed, MEDLINE and PsycInfo assessing trends and determinants of HRQL outcomes in children surviving critical illness. We also evaluated the psychometric properties of the HRQL instruments used in the studies identified by examining each measure’s reported reliability, validity and sensitivity to clinical change. Results The literature search identified 253 pediatric articles for potential inclusion in the review, among which data from 78 studies were ultimately selected for inclusion. Of the 22 measures utilized in the studies reviewed, only four demonstrated excellent psychometric properties for use in pediatric critical care trials. Trends in HRQL identified in the studies reviewed suggest significant ongoing morbidity for children surviving critical illness. Key determinants of poor HRQL outcomes include reason for PICU admission (sepsis, meningoencephalitis, trauma), antecedents (chronic comorbid conditions), treatments received (prolonged cardiopulmonary resuscitation, long-stay patients, invasive technology), psychological outcomes (post-traumatic stress disorder, parent anxiety/depression) and social and environmental characteristics (low socioeconomic status, parental education and functioning). Conclusions Validated pediatric HRQL instruments are now available. Significant impact on HRQL has been demonstrated in acute and acute on chronic critical illness. Future pediatric critical care interventional trials should include both mortality as well as long-term HRQL measurements to truly ascertain the full impact of critical illness in children.