Research: Patient-Reported Outcome Measures and Clinical Outcomes in Children with Foregut Anomalies

Children (Basel)

. 2021 Jul 10;8(7):587. doi: 10.3390/children8070587.

Patient-Reported Outcome Measures and Clinical Outcomes in Children with Foregut Anomalies

Isabel I Sreeram 1Chantal A Ten Kate 1Joost van Rosmalen 2 3Johannes M Schnater 1Saskia J Gischler 1René M H Wijnen 1Hanneke IJsselstijn 1André B Rietman 1 4Affiliations expand

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Increasing numbers of children and adults with chronic disease status highlight the need for a value-based healthcare system. Patient-reported outcome measures (PROMs) are essential to value-based healthcare, yet it remains unclear how they relate to clinical outcomes such as health and daily functioning. We aimed to assess the added value of self-reported PROMs for health status (HS) and quality of life (QoL) in the long-term follow-up of children with foregut anomalies. We evaluated data of PROMs for HS and/or QoL among eight-year-olds born with congenital diaphragmatic hernia (CDH), esophageal atresia (EA), or congenital lung malformations (CLM), collected within the infrastructure of a multidisciplinary, longitudinal follow-up program. Clinical outcomes were categorized into different outcome domains, and their relationships with self-reported HS and QoL were assessed through multivariable linear regression analyses. A total of 220 children completed HS and/or QoL self-reports. In children with CDH and EA, lower cognition was significantly associated with lower self-reported HS. Due to the low number of cases, multivariable linear regression analysis was not possible in children with CLM. HS, QoL, and clinical outcomes represent different aspects of a child’s wellbeing and should be measured simultaneously to facilitate a more holistic approach to clinical decision making.

Keywords: clinical decision-making; congenital diaphragmatic hernia; congenital lung malformations; esophageal atresia; value-based healthcare.

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