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Chronic conditions in children and young people: learning from administrative data
  1. Linda P M M Wijlaars1,2,
  2. Ruth Gilbert1,2,
  3. Pia Hardelid1,3
  1. 1Children's Policy Research Unit, UCL Institute of Child Health, London, UK
  2. 2Farr Institute of Health Informatics Research London, London, UK
  3. 3Department of Primary Care and Population Health, University College London, London, UK
  1. Correspondence to Professor Ruth Gilbert, Department of Population, Policy and Practice, UCL Institute of Child Health, 30 Guildford Street, London WC1N 1EH, UK; r.gilbert{at}ucl.ac.uk

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Introduction

Over the last century, the primary burden of disease in children and young people has shifted from infectious diseases towards chronic conditions.1 Improvements in neonatal and paediatric care for chronic conditions mean more children with previously lethal conditions are now surviving into adulthood.2 ,3 Depending on the definition used, 13–27% of children are affected by chronic conditions.4 Chronic conditions affect many aspects of the lives of children with consequences that endure into adulthood.5

Quality of healthcare for children with chronic conditions is a research and policy priority, but comes at a cost. In the USA, it is estimated that children with serious, complex chronic conditions account for 10% of admissions, but 41% of hospital charges.6 As life expectancy increases, these costs extend into adulthood. Better quality of healthcare during childhood can improve educational achievement and employment prospects and reduce disability and dependency in adulthood. To find out whether improvements in healthcare are indeed improving long-term outcomes for children with chronic conditions and their families, we need data.

In this article, we review how administrative health data can be used to evaluate the frequency of healthcare utilisation by children affected by chronic conditions and to evaluate outcomes. Administrative health data are collected routinely for non-research purposes, including for patient or service management or financial reimbursement. We focus specifically on hospital administrative databases and vital registration systems. The evidence generated by administrative hospital data on the burden and type of chronic conditions can help with planning and design of services and can be used to determine (the effects of) changes in practice of policy. We also discuss how studies using administrative health databases could be extended through data linkage, to other sectors, such as education and social care, to measure outcomes in adulthood, and to data …

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