Objective: To investigate the long-term health-related quality of life (HRQOL) outcomes for patients requiring at least 28 days of pediatric intensive care.
Design: Retrospective cohort and prospective follow-up study.
Setting: A 21-bed pediatric intensive care unit (PICU) in a university-affiliated, tertiary referral pediatric hospital.
Patients: One hundred ninety-three patients who spent 28 days or longer in the PICU between January 1, 1997 and December 31, 2004.
Interventions: Quality of life was measured using the Pediatric Quality of Life Inventory (Peds QL 4.0) parent-proxy version at 2 to 10 yrs after discharge. The PedsQL 4.0 is a modular measure of HRQOL, which is reliable in children aged 2 to 18 yrs. It generates a total score and physical, emotional, social, school, and psychosocial subscores.
Measurements and main results: Of the 193 patients, 41 died during their PICU admission and 27 died between PICU discharge and follow-up. Quality of life questionnaires were posted to parents of 108 of the 125 survivors and 70 were returned completed. Forty children (57.1%) had scores indicating a normal quality of life, whereas 30 (42.9%) had scores indicating impaired HRQOL. Of these, 14 (20%) had scores indicating poor quality of life with ongoing disabling health problems requiring hospitalization or the equivalent.
Conclusions: Our results indicate that, while long PICU stay is associated with significant mortality, the long-term HRQOL is normal for the majority of surviving children.