Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies: a multi-national cohort study

S. W. Kim; Xiaoyu Tian; L. Andronis; Rolf F. Maier; H. Varendi; A. V. Seppänen; Veronica Siljehav; Elizabeth S. Draper; Jennifer Zeitlin; S. Petrou; A. V. Seppänen; R. El Rafei; C. Bonnet; A. M. Aubert; J. Zeitlin; L. Andronis; S. W. Kim; S. Petrou; J. M. Pfeil; N. Thiele; S. Mader; S. J. Johnson; A. Fenton; E. S. Draper; U. Aden; C. Rodrigues; R. Costa; H. Barros; T. Pikuła; A. Montgomery; J. Mazela; J. Gadzinowski; C. Koopman-Esseboom; F. Ferrari; G. Faldella; G. Ancora; V. Carnielli; I. Croci; M. Cuttini; L. Wohlers; B. Misselwitz; M. Zemlin; R. F. Maier; P. Truffert; V. Pierrat; P. H. Jarreau; A. Burguet; P. Y. Ancel; P. Pedersen; K. Boerch; EFCNI; United Kingdom; Sweden; Portugal; Poland; The Netherlands; Italy; Germany; France; Estonia; Denmark; Belgium; On behalf of the SHIPS Research Group; Inserm Coordination; Health Economics team

doi:10.1038/s41390-024-03521-9

Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies: a multi-national cohort study

S. W. Kim^*, Xiaoyu Tian, L. Andronis, Rolf F. Maier, H. Varendi, A. V. Seppänen, Veronica Siljehav, Elizabeth S. Draper, Jennifer Zeitlin, S. Petrou, A. V. Seppänen, R. El Rafei, C. Bonnet, A. M. Aubert, J. Zeitlin, L. Andronis, S. W. Kim^*, S. Petrou, J. M. Pfeil, N. ThieleS. Mader, S. J. Johnson, A. Fenton, E. S. Draper, U. Aden, C. Rodrigues, R. Costa, H. Barros, T. Pikuła, A. Montgomery, J. Mazela, J. Gadzinowski, C. Koopman-Esseboom, F. Ferrari, G. Faldella, G. Ancora, V. Carnielli, I. Croci, M. Cuttini, L. Wohlers, B. Misselwitz, M. Zemlin, R. F. Maier, P. Truffert, V. Pierrat, P. H. Jarreau, A. Burguet, P. Y. Ancel, P. Pedersen, K. Boerch, EFCNI, United Kingdom, Sweden, Portugal, Poland, The Netherlands, Italy, Germany, France, Estonia, Denmark, Belgium, On behalf of the SHIPS Research Group, Inserm Coordination, Health Economics team

^*Corresponding author af dette arbejde

Afdeling for Børn og Unge AHH

1 Citationer (Scopus)

Abstract

BACKGROUND: This study aimed to investigate the health-related quality of life (HRQoL) at 5 years of age of European children born very preterm across multi-dimensional outcomes by presence and severity of congenital anomalies.

METHODS: The study used data from a European cohort of children born very preterm (<32 weeks of gestation) and followed up to 5 years of age (N = 3493). Multilevel Ordinary Least Squares (OLS) regression were used to explore the associations between the presence and severity of congenital anomalies.

RESULTS: The mean total PedsQL™ GCS score for children with a mild congenital anomaly was lower than the respective value for children without a congenital anomaly by 3.7 points (p < 0.05), controlling for socioeconomic variables only; this effect was attenuated when accumulatively adjusting for perinatal characteristics (3.3 points (p < 0.05)) and neonatal morbidities (3.1 (p < 0.05)). The mean total PedsQL™ GCS scores for children who had a severe congenital anomaly were lower by 7.1 points (p < 0.001), 6.6 points (p < 0.001) and 6.0 points (p < 0.001) when accumulatively adjusting for socioeconomic, perinatal and neonatal variables, respectively.

CONCLUSION: This study revealed that the presence and severity of congenital anomalies are significant predictors of HRQoL outcomes in children born very preterm.

IMPACT: Children born very preterm with congenital anomalies experience poorer health-related quality of life (HRQoL) than their very preterm counterparts born without congenital anomalies. Increased severity of these anomalies compounds the negative impacts on HRQoL. Our findings can be used by stakeholders for clinical and planning purposes.

Originalsprog	Engelsk
Tidsskrift	Pediatric Research
Sider (fra-til)	1711-1721
Antal sider	11
ISSN	0031-3998
DOI	https://doi.org/10.1038/s41390-024-03521-9
Status	Udgivet - 7 sep. 2024

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Kim, S. W., Tian, X., Andronis, L., Maier, R. F., Varendi, H., Seppänen, A. V., Siljehav, V., Draper, E. S., Zeitlin, J., Petrou, S., Seppänen, A. V., El Rafei, R., Bonnet, C., Aubert, A. M., Zeitlin, J., Andronis, L., Kim, S. W., Petrou, S., Pfeil, J. M., ... Health Economics team (2024). Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies: a multi-national cohort study. Pediatric Research, 1711-1721. https://doi.org/10.1038/s41390-024-03521-9

Kim, SW, Tian, X, Andronis, L, Maier, RF, Varendi, H, Seppänen, AV, Siljehav, V, Draper, ES, Zeitlin, J, Petrou, S, Seppänen, AV, El Rafei, R, Bonnet, C, Aubert, AM, Zeitlin, J, Andronis, L, Kim, SW, Petrou, S, Pfeil, JM, Thiele, N, Mader, S, Johnson, SJ, Fenton, A, Draper, ES, Aden, U, Rodrigues, C, Costa, R, Barros, H, Pikuła, T, Montgomery, A, Mazela, J, Gadzinowski, J, Koopman-Esseboom, C, Ferrari, F, Faldella, G, Ancora, G, Carnielli, V, Croci, I, Cuttini, M, Wohlers, L, Misselwitz, B, Zemlin, M, Maier, RF, Truffert, P, Pierrat, V, Jarreau, PH, Burguet, A, Ancel, PY, Pedersen, P , Boerch, K, EFCNI, United Kingdom, Sweden, Portugal, Poland, The Netherlands, Italy, Germany, France, Estonia, Denmark, Belgium, On behalf of the SHIPS Research Group, Inserm Coordination & Health Economics team 2024, 'Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies: a multi-national cohort study', Pediatric Research, s. 1711-1721. https://doi.org/10.1038/s41390-024-03521-9

@article{a61bfe07bae046d38bf7255f281fb619,

title = "Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies: a multi-national cohort study",

abstract = "BACKGROUND: This study aimed to investigate the health-related quality of life (HRQoL) at 5 years of age of European children born very preterm across multi-dimensional outcomes by presence and severity of congenital anomalies.METHODS: The study used data from a European cohort of children born very preterm (<32 weeks of gestation) and followed up to 5 years of age (N = 3493). Multilevel Ordinary Least Squares (OLS) regression were used to explore the associations between the presence and severity of congenital anomalies.RESULTS: The mean total PedsQL{\texttrademark} GCS score for children with a mild congenital anomaly was lower than the respective value for children without a congenital anomaly by 3.7 points (p < 0.05), controlling for socioeconomic variables only; this effect was attenuated when accumulatively adjusting for perinatal characteristics (3.3 points (p < 0.05)) and neonatal morbidities (3.1 (p < 0.05)). The mean total PedsQL{\texttrademark} GCS scores for children who had a severe congenital anomaly were lower by 7.1 points (p < 0.001), 6.6 points (p < 0.001) and 6.0 points (p < 0.001) when accumulatively adjusting for socioeconomic, perinatal and neonatal variables, respectively.CONCLUSION: This study revealed that the presence and severity of congenital anomalies are significant predictors of HRQoL outcomes in children born very preterm.IMPACT: Children born very preterm with congenital anomalies experience poorer health-related quality of life (HRQoL) than their very preterm counterparts born without congenital anomalies. Increased severity of these anomalies compounds the negative impacts on HRQoL. Our findings can be used by stakeholders for clinical and planning purposes.",

author = "Kim, {S. W.} and Xiaoyu Tian and L. Andronis and Maier, {Rolf F.} and H. Varendi and Sepp{\"a}nen, {A. V.} and Veronica Siljehav and Draper, {Elizabeth S.} and Jennifer Zeitlin and S. Petrou and Sepp{\"a}nen, {A. V.} and {El Rafei}, R. and C. Bonnet and Aubert, {A. M.} and J. Zeitlin and L. Andronis and Kim, {S. W.} and S. Petrou and Pfeil, {J. M.} and N. Thiele and S. Mader and Johnson, {S. J.} and A. Fenton and Draper, {E. S.} and U. Aden and C. Rodrigues and R. Costa and H. Barros and T. Piku{\l}a and A. Montgomery and J. Mazela and J. Gadzinowski and C. Koopman-Esseboom and F. Ferrari and G. Faldella and G. Ancora and V. Carnielli and I. Croci and M. Cuttini and L. Wohlers and B. Misselwitz and M. Zemlin and Maier, {R. F.} and P. Truffert and V. Pierrat and Jarreau, {P. H.} and A. Burguet and Ancel, {P. Y.} and P. Pedersen and K. Boerch and EFCNI and {United Kingdom} and Sweden and Portugal and Poland and {The Netherlands} and Italy and Germany and France and Estonia and Denmark and Belgium and {On behalf of the SHIPS Research Group} and {Inserm Coordination} and {Health Economics team}",

note = "Publisher Copyright: {\textcopyright} The Author(s) 2024.",

year = "2024",

month = sep,

day = "7",

doi = "10.1038/s41390-024-03521-9",

language = "English",

pages = "1711--1721",

journal = "Pediatric Research",

issn = "0031-3998",

publisher = "Nature Publishing Group",

}

TY - JOUR

T1 - Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies

T2 - a multi-national cohort study

AU - Kim, S. W.

AU - Tian, Xiaoyu

AU - Andronis, L.

AU - Maier, Rolf F.

AU - Varendi, H.

AU - Seppänen, A. V.

AU - Siljehav, Veronica

AU - Draper, Elizabeth S.

AU - Zeitlin, Jennifer

AU - Petrou, S.

AU - Seppänen, A. V.

AU - El Rafei, R.

AU - Bonnet, C.

AU - Aubert, A. M.

AU - Zeitlin, J.

AU - Andronis, L.

AU - Kim, S. W.

AU - Petrou, S.

AU - Pfeil, J. M.

AU - Thiele, N.

AU - Mader, S.

AU - Johnson, S. J.

AU - Fenton, A.

AU - Draper, E. S.

AU - Aden, U.

AU - Rodrigues, C.

AU - Costa, R.

AU - Barros, H.

AU - Pikuła, T.

AU - Montgomery, A.

AU - Mazela, J.

AU - Gadzinowski, J.

AU - Koopman-Esseboom, C.

AU - Ferrari, F.

AU - Faldella, G.

AU - Ancora, G.

AU - Carnielli, V.

AU - Croci, I.

AU - Cuttini, M.

AU - Wohlers, L.

AU - Misselwitz, B.

AU - Zemlin, M.

AU - Maier, R. F.

AU - Truffert, P.

AU - Pierrat, V.

AU - Jarreau, P. H.

AU - Burguet, A.

AU - Ancel, P. Y.

AU - Pedersen, P.

AU - Boerch, K.

AU - EFCNI

AU - United Kingdom

AU - Sweden

AU - Portugal

AU - Poland

AU - The Netherlands

AU - Italy

AU - Germany

AU - France

AU - Estonia

AU - Denmark

AU - Belgium

AU - On behalf of the SHIPS Research Group

AU - Inserm Coordination

AU - Health Economics team

PY - 2024/9/7

Y1 - 2024/9/7

N2 - BACKGROUND: This study aimed to investigate the health-related quality of life (HRQoL) at 5 years of age of European children born very preterm across multi-dimensional outcomes by presence and severity of congenital anomalies.METHODS: The study used data from a European cohort of children born very preterm (<32 weeks of gestation) and followed up to 5 years of age (N = 3493). Multilevel Ordinary Least Squares (OLS) regression were used to explore the associations between the presence and severity of congenital anomalies.RESULTS: The mean total PedsQL™ GCS score for children with a mild congenital anomaly was lower than the respective value for children without a congenital anomaly by 3.7 points (p < 0.05), controlling for socioeconomic variables only; this effect was attenuated when accumulatively adjusting for perinatal characteristics (3.3 points (p < 0.05)) and neonatal morbidities (3.1 (p < 0.05)). The mean total PedsQL™ GCS scores for children who had a severe congenital anomaly were lower by 7.1 points (p < 0.001), 6.6 points (p < 0.001) and 6.0 points (p < 0.001) when accumulatively adjusting for socioeconomic, perinatal and neonatal variables, respectively.CONCLUSION: This study revealed that the presence and severity of congenital anomalies are significant predictors of HRQoL outcomes in children born very preterm.IMPACT: Children born very preterm with congenital anomalies experience poorer health-related quality of life (HRQoL) than their very preterm counterparts born without congenital anomalies. Increased severity of these anomalies compounds the negative impacts on HRQoL. Our findings can be used by stakeholders for clinical and planning purposes.

AB - BACKGROUND: This study aimed to investigate the health-related quality of life (HRQoL) at 5 years of age of European children born very preterm across multi-dimensional outcomes by presence and severity of congenital anomalies.METHODS: The study used data from a European cohort of children born very preterm (<32 weeks of gestation) and followed up to 5 years of age (N = 3493). Multilevel Ordinary Least Squares (OLS) regression were used to explore the associations between the presence and severity of congenital anomalies.RESULTS: The mean total PedsQL™ GCS score for children with a mild congenital anomaly was lower than the respective value for children without a congenital anomaly by 3.7 points (p < 0.05), controlling for socioeconomic variables only; this effect was attenuated when accumulatively adjusting for perinatal characteristics (3.3 points (p < 0.05)) and neonatal morbidities (3.1 (p < 0.05)). The mean total PedsQL™ GCS scores for children who had a severe congenital anomaly were lower by 7.1 points (p < 0.001), 6.6 points (p < 0.001) and 6.0 points (p < 0.001) when accumulatively adjusting for socioeconomic, perinatal and neonatal variables, respectively.CONCLUSION: This study revealed that the presence and severity of congenital anomalies are significant predictors of HRQoL outcomes in children born very preterm.IMPACT: Children born very preterm with congenital anomalies experience poorer health-related quality of life (HRQoL) than their very preterm counterparts born without congenital anomalies. Increased severity of these anomalies compounds the negative impacts on HRQoL. Our findings can be used by stakeholders for clinical and planning purposes.

UR - http://www.scopus.com/inward/record.url?scp=85206914411&partnerID=8YFLogxK

U2 - 10.1038/s41390-024-03521-9

DO - 10.1038/s41390-024-03521-9

M3 - Journal article

C2 - 39242941

AN - SCOPUS:85206914411

SN - 0031-3998

SP - 1711

EP - 1721

JO - Pediatric Research

JF - Pediatric Research

ER -

Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies: a multi-national cohort study

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