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Impact of hospitalization for vaso-occlusive crisis on health-related quality of life in children with sickle cell disease
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  • Caroline Vuong,
  • Ibtissame Moussa,
  • Maud van Muilekom,
  • Harriët Heijboer,
  • Eva Rettenbacher,
  • Lotte Haverman,
  • Jos Twisk,
  • Karin Fijnvandraat,
  • Corien L. Eckhardt
Caroline Vuong
Emma Kinderziekenhuis Amsterdam UMC
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Ibtissame Moussa
Emma Kinderziekenhuis Amsterdam UMC
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Maud van Muilekom
Emma Kinderziekenhuis Amsterdam UMC
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Harriët Heijboer
Emma Kinderziekenhuis Amsterdam UMC
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Eva Rettenbacher
Emma Kinderziekenhuis Amsterdam UMC
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Lotte Haverman
Emma Kinderziekenhuis Amsterdam UMC
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Jos Twisk
Amsterdam UMC Locatie VUmc Afdeling Epidemiologie en Biostatistiek
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Karin Fijnvandraat
Emma Kinderziekenhuis Amsterdam UMC
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Corien L. Eckhardt
Emma Kinderziekenhuis Amsterdam UMC

Corresponding Author:c.l.eckhardt@amsterdamumc.nl

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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.
15 May 2023Submission Checks Completed
15 May 2023Assigned to Editor
15 May 2023Submitted to Pediatric Blood & Cancer
15 May 2023Review(s) Completed, Editorial Evaluation Pending
17 May 2023Reviewer(s) Assigned
12 Jun 2023Editorial Decision: Revise Major
22 Aug 2023Submission Checks Completed
22 Aug 2023Assigned to Editor
22 Aug 20231st Revision Received
22 Aug 2023Review(s) Completed, Editorial Evaluation Pending
22 Aug 2023Reviewer(s) Assigned
13 Sep 2023Editorial Decision: Accept