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Open Access 01-12-2008 | Original Paper

Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands

Authors: Lidwine B. Mokkink, Johanna H. van der Lee, Martha A. Grootenhuis, Martin Offringa, Hugo S. A. Heymans, The Dutch National Consensus Committee “Chronic Diseases and Health Conditions in Childhood”

Published in: European Journal of Pediatrics | Issue 12/2008

Abstract

A national consensus procedure was organised to define chronic diseases and health conditions in childhood. Based on (1) a systematic literature search on the definitions of chronic conditions in childhood and (2) a theoretical framework of determinants and indicators of health conditions, a definition of chronic conditions in childhood was proposed. This proposal was subsequently modified according to the comments received from 21 Dutch experts (clinicians, researchers and representatives of patient organisations) in two written consultation rounds and one national meeting, until consensus was reached. Consensus was attained on a definition consisting of four criteria: a disease or condition is considered to be a chronic condition in childhood if: (1) it occurs in children aged 0 up to 18 years; (2) the diagnosis is based on medical scientific knowledge and can be established using reproducible and valid methods or instruments according to professional standards; (3) it is not (yet) curable or, for mental health conditions, if it is highly resistant to treatment and (4) it has been present for longer than three months or it will, very probably, last longer than three months, or it has occurred three times or more during the past year and will probably reoccur. This definition was operationalised using the ICD-10 classification of the World Health Organisation (WHO; International Statistical Classification of Diseases and Related Health Problems [ICD], 10th revision, Geneva, Switzerland, 1992). By this systematic and thorough procedure, national consensus on a comprehensive definition of chronic conditions in children which can be used for epidemiological research was reached.

Available only for authorised users

Artsennet (2005) Home page at: http://www.ajn.artsennet.nl

Ministry of Health, Welfare and Sport (1997) The Netherlands’ policy for the chronically ill. Report of the Ministry of Health, Welfare and Sport, The Hague, the Netherlands, available online at: http://www.minvws.nl/en/folders/zzoude_directies/gzb/the_netherlands_policy_for_the_chronically_ill.asp

Addor V, Santos-Eggimann B, Fawer CL, Paccaud F, Calame A (1997) Enrollment of a population-based cohort of newborns at higher risk of developing a chronic condition: the EDEN study. Etude du Developpement des Nouveau-nés Study. Int J Epidemiol 26:340–348PubMedCrossRef

Beers NS, Kemeny A, Sherritt L, Palfrey JS (2003) Variations in state-level definitions: children with special health care needs. Public Health Rep 118:434–447PubMedCrossRef

Bouter LM, van Dongen MCJM (1995) Epidemiologisch onderzoek: opzet en interpretatie. Bohn Stafleu Van Loghum, Houten

Cooper WO, Hickson GB, Gray CL, Ray WA (1999) Changes in continuity of enrollment among high-risk children following implementation of TennCare. Arch Pediatr Adolesc Med 153:1145–1149PubMed

Dodge JA, Morison S, Lewis PA, Coles EC, Geddes D, Russell G, Littlewood JM, Scott MT (1997) Incidence, population, and survival of cystic fibrosis in the UK, 1968–95. UK Cystic Fibrosis Survey Management Committee. Arch Dis Child 77:493–496PubMedCrossRef

Feudtner C, Christakis DA, Connell FA (2000) Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington State, 1980–1997. Pediatrics 106:205–209PubMed

Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD (2001) Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics 107:E99PubMedCrossRef

10.

Gallaher MM, Christakis DA, Connell FA (2002) Health care use by children diagnosed as having developmental delay. Arch Pediatr Adolesc Med 156:246–251PubMed

11.

Groothoff JW (2005) Long-term outcomes of children with end-stage renal disease. Pediatr Nephrol 20:849–853PubMedCrossRef

12.

Jessop DJ, Stein RE (1995) Consistent but not the same. Effect of method on chronic condition rates. Arch Pediatr Adolesc Med 149:1105–1110PubMed

13.

Knottnerus JA, Metsemakers J, Höppener P, Limonard C (1992) Chronic illness in the community and the concept of ‘social prevalence.’ Fam Pract 9:15–21PubMedCrossRef

14.

Martin C, Nisa M (1996) Meeting the needs of children and families in chronic illness and disease. A greater role for the GP? Aust Fam Physician 25:1273–1281PubMed

15.

McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B (1998) A new definition of children with special health care needs. Pediatrics 102:137–140PubMedCrossRef

16.

Neff JM, Sharp VL, Muldoon J, Graham J, Popalisky J, Gay JC (2002) Identifying and classifying children with chronic conditions using administrative data with the clinical risk group classification system. Ambul Pediatr 2:71–79PubMedCrossRef

17.

Newacheck PW, Stoddard JJ (1994) Prevalence and impact of multiple childhood chronic illnesses. J Pediatr 124:40–48PubMedCrossRef

18.

Perrin EC, Newacheck P, Pless IB, Drotar D, Gortmaker SL, Leventhal J, Perrin JM, Stein RE, Walker DK, Weitzman M (1993) Issues involved in the definition and classification of chronic health conditions. Pediatrics 91:787–793PubMed

19.

Perrin JM, Kuhlthau K, McLaughlin TJ, Ettner SL, Gortmaker SL (1999) Changing patterns of conditions among children receiving Supplemental Security Income disability benefits. Arch Pediatr Adolesc Med 153:80–84PubMed

20.

Pless IB, Douglas JW (1971) Chronic illness in childhood. I. Epidemiological and clinical characteristics. Pediatrics 47:405–414PubMed

21.

Roizen NJ, Patterson D (2003) Down’s syndrome. Lancet 361:1281–1289PubMedCrossRef

22.

Rolnick SJ, Flores SK, Paulsen KJ, Thorson S (2003) Identification of children with special health care needs within a managed care setting. Arch Pediatr Adolesc Med 157:273–278PubMed

23.

Ruwaard D, Kramers PGN (1997) Volksgezondheid Toekomst Verkenning 1997. De som der delen. Elsevier/De Tijdstroom, Utrecht

24.

Schreurs M, Wiersma D (1992) Chronische psychiatrische patiënten in Midden-Twente: een epidemiologisch onderzoek naar hun functioneren en hun zorgbehoefte. Tijdschrift voor Psychiatrie 34:255–267

25.

Skinner R, Wallace WH, Levitt G (2007) Long-term follow-up of children treated for cancer: why is it necessary, by whom, where and how? Arch Dis Child 92:257–260PubMedCrossRef

26.

Stein RE, Bauman LJ, Westbrook LE, Coupey SM, Ireys HT (1993) Framework for identifying children who have chronic conditions: the case for a new definition. J Pediatr 122:342–347PubMedCrossRef

27.

van den Bos GAM (1989) Zorgen van en voor chronisch zieken (care for the chronically ill). Thesis, Bohn, Scheltema & Holkema, Utrecht, Antwerpen

28.

van der Lee JH, Mokkink LB, Grootenhuis MA, Heymans HS, Offringa M (2007) Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA 297:2741–2751PubMedCrossRef

29.

van Oers JAM (2003) Health on course? Key messages from the 2002 Dutch Public Health Status and Forecasts Report. RIVM report no. 270551003. Bohn Stafleu Van Loghum, Houten

30.

Westbom L, Kornfalt R (1987) Chronic illness among children in a total population. An epidemiological study in a Swedish primary health care district. Scand J Soc Med 15:87–97PubMed

31.

World Health Organization (WHO) (1992) International Statistical Classification of Diseases and Related Health Problems (ICD), 10th revision. WHO, Geneva, Switzerland

Title: Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands
Authors: Lidwine B. Mokkink
Johanna H. van der Lee
Martha A. Grootenhuis
Martin Offringa
Hugo S. A. Heymans
The Dutch National Consensus Committee “Chronic Diseases and Health Conditions in Childhood”
Publication date: 01-12-2008
Publisher: Springer-Verlag
Published in: European Journal of Pediatrics / Issue 12/2008
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI: https://doi.org/10.1007/s00431-008-0697-y

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Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands

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Keynote webinar | Spotlight on medication adherence

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