Impact of hospitalization for vaso-occlusive crisis on health-related
quality of life in children with sickle cell disease
Abstract
Background: Sickle cell disease (SCD) is characterized by
vaso-occlusive crises (VOCs), that impair the health-related quality of
life (HRQoL). The aim of this study is to evaluate the impact of
hospitalization for VOCs on HRQoL in children with SCD over time.
Methods: In this longitudinal cohort study, children aged 8-18
years diagnosed with SCD at the Amsterdam UMC were included between 2012
and 2021. HRQoL was annually measured as part of standard care using the
Pediatric Quality of Life Inventory. The impact of hospitalization for
VOC on HRQoL was evaluated using linear mixed models 3, 6, 9 and 12
months after hospitalization. The effect of frequency of hospitalization
for VOC on HRQoL was evaluated over the last 12 months.
Results: In total , 94 children with SCD were included
with a median age of 11.8 years (IQR 9-14). Thirty-seven patients (39%)
had been hospitalized for a VOC. Hospitalization for VOC led to a
decrease of 3.2-4.8 points in total HRQoL compared to patients without
hospitalization, most pronounced 3 months after hospitalization.
Recurrent admission for VOC in the last 12 months was associated with a
decrease of 2.3 points in total HRQoL (p=0.04). The most affected
subscale was physical functioning. Conclusion: The adverse
effects of hospitalization for VOC in children with SCD persist up to 12
months after hospitalization. After hospitalization for VOC, extra
attention and support for its negative impact on HRQoL are recommended.
This study also underlines the importance of systematically measuring
HRQoL allowing clinicians to intervene accordingly.