Long-stay children in intensive care: long-term functional outcome and quality of life from a 20-yr institutional study.

OBJECTIVE: Long-stay patients (≥28 days) in pediatric intensive care units consume a disproportionate amount of resources, and very few studies have reported their outcome. We determined the long-term outcome of these children admitted to intensive care over a 20-yr period (January 1, 1989 to December 31, 2008).
SETTING: Pediatric intensive care unit in a university-affiliated tertiary pediatric hospital in Melbourne, Australia
METHODS: Demographic and clinical characteristics were compared after dividing patients into four groups depending on year of admission (1989-1993, 1994-1998, 1999-2003, and 2004-2008). Preadmission health status and long-term functional outcome were evaluated by a modified Glasgow outcome scale. Quality of life was assessed by using the Health Utilities Index Mark 1.
RESULTS: Over the 20-yr period, 233 long-stay patients had 269 long stay admission episodes to the pediatric intensive care unit, accounting for 1% (269 of 27,536) of all pediatric intensive care unit admissions and utilized 18.5% (15,740 of 85,032) of occupied bed days. Bed occupancy of long stay patients (as percentage of overall pediatric intensive care unit bed occupancy) increased from 8% in 1989 to 21% in 2008 (p = .001). Median age at admission was 4.2 months [interquartile range 0.38-41.5] and median length of stay was 40 days [interquartile range 32-57]. One hundred sixteen of 233 (49.8%) patients had died at the time of follow-up. Children who died were younger compared to survivors (median 3.4 months [interquartile range 0.38-41.5 vs. median 7.6 months, interquartile range 0.6-71.1, p = .026], had a higher proportion of comorbid illness (91% vs. 80%, p = .026), and 63% had a preexisting moderate or severe disability compared to 51% of survivors (p = .215). One hundred seventeen of 233 children survived and long-term functional outcome was favorable (normal, functionally normal, or mild disability) in 27% (63 of 233) and unfavorable (moderate or severe disability) for 17.2% (40 of 233). Outcome status was not known for 6% (14 of 233). Among survivors (n = 117), more than 50% (63 of 117) had favorable outcome. The quality of life in patients aged >2 yrs at follow up was good in 21% (40 of 222), moderate in 8% (16 of 222), poor quality in 68% (130 of 222, this includes deaths), and very poor in 3% (5 of 222).
CONCLUSIONS: More than two-thirds of children who stay in intensive care for ≥28 days have an unfavorable outcome (moderate disability, severe disability, or death). Long-stay patients in pediatric intensive care utilized a large proportion of resources and this utilization has considerably increased with time. Service provision and policy making should expect worsening of these trends in the future; its effects on critical care bed availability and overall activity levels could be substantial.