Health-related quality of life in children with congenital vascular malformations.

Autor: Bouwman FCM; Department of Pediatric Surgery, Radboudumc-Amalia Children's Hospital, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands. Frederique.Bouwman@radboudumc.nl.; Department of Radiology and Nuclear Medicine, Radboudumc, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands. Frederique.Bouwman@radboudumc.nl.; Radboudumc Center of Expertise for Vascular Anomalies Hecovan, VASCERN VASCA European Reference Center, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands. Frederique.Bouwman@radboudumc.nl., Verhaak C; Department of Medical Psychology, Radboudumc, Nijmegen, the Netherlands., de Blaauw I; Department of Pediatric Surgery, Radboudumc-Amalia Children's Hospital, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands., Kool LJS; Department of Radiology and Nuclear Medicine, Radboudumc, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands.; Radboudumc Center of Expertise for Vascular Anomalies Hecovan, VASCERN VASCA European Reference Center, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands., Loo DMWMT; Radboudumc Center of Expertise for Vascular Anomalies Hecovan, VASCERN VASCA European Reference Center, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands.; Department of Pediatric Hematology, Radboudumc-Amalia Children's Hospital, Nijmegen, the Netherlands., van Rooij IALM; Department of Health Evidence, Radboudumc, Nijmegen, the Netherlands., van der Vleuten CJM; Radboudumc Center of Expertise for Vascular Anomalies Hecovan, VASCERN VASCA European Reference Center, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands.; Department of Dermatology, Radboudumc, Nijmegen, the Netherlands., Botden SMBI; Department of Pediatric Surgery, Radboudumc-Amalia Children's Hospital, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands.; Radboudumc Center of Expertise for Vascular Anomalies Hecovan, VASCERN VASCA European Reference Center, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands., Verhoeven BH; Department of Pediatric Surgery, Radboudumc-Amalia Children's Hospital, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands.; Radboudumc Center of Expertise for Vascular Anomalies Hecovan, VASCERN VASCA European Reference Center, P.O. Box 9101, 6500 HB, Nijmegen, the Netherlands.
Jazyk: angličtina
Zdroj: European journal of pediatrics [Eur J Pediatr] 2023 Nov; Vol. 182 (11), pp. 5067-5077. Date of Electronic Publication: 2023 Sep 04.
DOI: 10.1007/s00431-023-05166-y
Abstrakt: A cross-sectional study was performed to evaluate health-related quality of life (HRQOL) in children with congenital vascular malformations (CVM) and to investigate factors associated with an impaired HRQOL. Children (2-17 years) with CVMs who visited the HECOVAN expertise center between 2016-2018 were included. The PedsQL 4.0 Generic Core Scales were used and a score ≥ 1.0 SD below the normative mean was defined as an impaired HRQOL. Factors associated with impairment were investigated using univariate and multivariate logistic regression analysis. The median overall HRQOL was 84.8/100 (n = 207; 41% boys, 59% girls; self-reported IQR 73.9-92.4 and parent-reported IQR 71.4-92.4). Patients aged 13-17 years reported significantly worse physical functioning than those aged 8-12 years (median 84.4, IQR 71.1-93.8 versus median 90.6, IQR 81.3-96.9; p = 0.02). Parents reported a significantly lower overall HRQOL than their children (median 80.4, IQR 70.7-90.8 versus median 85.9, IQR 76.1-92.4; p = 0.001). HRQOL was impaired in 25% of patients. Impairment occurred significantly more often in lower extremity CVMs (38%, p = 0.01) and multifocal CVMs (47%, p = 0.01) compared to CVMs in the head/neck region (13%). Other associated factors included invasive management (31% versus 14%; p = 0.01), age at first treatment ≤ 5 years (48% versus 25%; p = 0.02) and ongoing treatment (38% versus 18%; p = 0.004). After correction for other factors, significance remained for lower extremity CVMs and ongoing invasive treatment.
Conclusions: Overall median HRQOL was reasonable and not significantly different from the norm sample. Parental ratings were significantly lower than their children's ratings. A quarter of the patients had an impaired HRQOL, which seemed to worsen with age. Independently associated factors included a lower extremity CVM and invasive management.
What Is Known: • Congenital vascular malformations could affect health-related quality of life (HRQOL). • Studies on pediatric patients are limited and either very small or in combination with adult patient series.
What Is New: • This study raises awareness of an impaired HRQOL in 25% of pediatric patients with congenital vascular malformations. • Associated factors included a lower extremity CVM and invasive management.
(© 2023. The Author(s).)
Databáze: MEDLINE
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