The challenge of defining chronic illness for health monitoring in children: opening a can of worms. (30th September 2020)

• Record Type: Journal Article
• Authors: Neuhauser, H; Thamm, R; Mauz, E; Poethko-Müller, C
• Is Part Of: European journal of public health. Volume 30(2020)Supplement 5
• Publication Date: 2020-09-30
• Subjects: Epidemiology -- Europe -- Periodicals; Public health -- Europe -- Periodicals; 362.109405
• DOI: 10.1093/eurpub/ckaa165.1062
• Languages: English
• ISSNs: 1101-1262

Abstract

Abstract: Background: A straightforward health monitoring definition of chronic illness in children would have great utility for estimation of health care and social service needs as well as resource allocation. Methods: This study analyses various definitions of chronic illness in children and adolescents in cross-sectional national health surveys in Germany based on: the Children with Special Health Care Needs (CSHCN) 14-item-questionnaire, a list of 15 self-reported medical diagnoses in the past 12 months, and a generic single-question parent-reported chronic condition from the Minimum European Health Module (MEHM), also used in EU-SILC and EHIS surveys. Results: 13.7% (95% CI 13.0-14.4) of children and adolescents aged 0-17 years had special health care needs in the first National Interview and Examination Survey in Children and Adolescents in Germany KiGGS 2003-2006. However, surprisingly, the prevalence was less than half in children with a migration background and was not associated with social status or income. The list of diagnoses identified a very high proportion of 31.5 (30.7-32.4) of children aged 0-17 years as chronically ill but does not take into account disease severity or impact. The generic MEHM-question in the KiGGS 2009-2012 survey identified 16.2% (15.3-17.1) of 0- to 17-year-olds as chronically ill, however, only one in five was affected in their daily activities. Parents denied chronic illness in 11.2% of children with epilepsy, 18.8% of children with asthma and 62.8% of children with attention deficit hyperactivity disorder. Conclusions: None of the three definitions of chronically ill children is entirely satisfactory so far: CSHCN may need an adaptation of the German version to better capture inequalities, the disease list needs further severity differentiation and MEHM has recently shown low test-retest reliability (kappa 0.56) when administered twice within 6 months in a large Belgian sample and may need revisiting as well.