TY - JOUR
T1 - Impact of hospitalization for vaso-occlusive crisis on health-related quality of life in children with sickle cell disease
AU - Vuong, Caroline
AU - Moussa, Ibtissame
AU - van Muilekom, Maud M.
AU - Heijboer, Harriët
AU - Rettenbacher, Eva
AU - Haverman, Lotte
AU - Twisk, Jos
AU - Fijnvandraat, Karin
AU - Eckhardt, Corien L.
N1 - Funding Information: The authors received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Publisher Copyright: © 2023 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.
PY - 2023/12
Y1 - 2023/12
N2 - 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 (interquartile range [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 =.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.
AB - 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 (interquartile range [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 =.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.
KW - children
KW - health-related quality of life
KW - patient-reported outcomes
KW - sickle cell disease
KW - vaso-occlusive crisis
UR - http://www.scopus.com/inward/record.url?scp=85173023347&partnerID=8YFLogxK
U2 - https://doi.org/10.1002/pbc.30691
DO - https://doi.org/10.1002/pbc.30691
M3 - Article
C2 - 37749772
SN - 1545-5009
VL - 70
JO - Pediatric Blood and Cancer
JF - Pediatric Blood and Cancer
IS - 12
M1 - e30691
ER -