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Review |

Definitions and Measurement of Chronic Health Conditions in Childhood:  A Systematic Review FREE

Johanna H. van der Lee, MD, PhD; Lidwine B. Mokkink, MSc; Martha A. Grootenhuis, PhD; Hugo S. Heymans, MD, PhD; Martin Offringa, MD, PhD
[+] Author Affiliations

Author Affiliations: Department of Pediatric Clinical Epidemiology (Drs van der Lee and Offringa), Pediatric Psychosocial Department (Ms Mokkink and Dr Grootenhuis), and Departments of Pediatrics (Dr Heymans) and Neonatology (Dr Offringa), Emma Children's Hospital, Academic Medical Center, University of Amsterdam, the Netherlands. Ms Mokkink is currently with the Institute for Research in Extramural Medicine (EMGO Institute), Vrije Universiteit University Medical Center, Amsterdam.

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JAMA. 2007;297(24):2741-2751. doi:10.1001/jama.297.24.2741.
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Context Changes in the prevalence of chronic health conditions in childhood have considerable societal consequences for health care planning and for employment. To obtain valid and reliable estimates of the prevalence of chronic health conditions, a clear definition is needed.

Objective To present an overview of all definitions and operationalizations that have been applied to measure the prevalence of chronic health conditions in childhood.

Data Sources PubMed and the Web of Science were searched for articles published up to December 2006. Also, references were searched by hand for related articles.

Study Selection Non–English- and non–Dutch-language articles were excluded. Of 7252 articles found, 64 articles that stated a conceptual definition and/or operationalization of chronic health conditions in children (aged 0-18 years) were included.

Data Extraction Data on the (1) definition; (2) operationalization in terms of source of information, method of information retrieval, and study population; and (3) resulting prevalence rate were extracted by 2 independent reviewers.

Data Synthesis A large range of definitions were in use, of which 4 were cited by many authors. Various operationalizations of the concepts that were measured were identified. Chronic health conditions in childhood prevalence estimates ranged from 0.22% to 44%, depending on these operationalizations.

Conclusions The wide variability in reported prevalence rates of chronic health conditions in childhood can be explained by considerable diversity in the concepts and operationalizations used. International consensus about the conceptual definition of chronic health conditions in childhood is needed.

As a result of improved efficacy of treatments and care for life-threatening pediatric conditions, the survival of children with serious congenital or acquired diseases in developed countries has increased during the last decades.1,2 Yet, many of these children have not been cured (eg, those with cystic fibrosis) or they have disabling sequelae of their disease (eg, cerebral palsy and juvenile rheumatoid arthritis) or its treatment (eg, retinopathy of prematurity). The incidences of some other conditions, such as asthma and obesity, are rising. Therefore, the prevalence of chronic diseases in children and in young adults, which is a function of incidence and duration, has increased since the 1980s and will likely increase further.36

In addition to the added disease burden of children and their families, this increase in prevalence has considerable financial and organizational consequences for health care planning and for employment. To enhance the societal participation of these children as they approach adulthood and to be able to plan for sufficient and adequate facilities, policy makers and politicians need to rely on valid prevalence data. Such prevalence data on chronic conditions in children and young adults are not only useful for planning for health care and provisions for the welfare of young adults with chronic conditions, they can also be considered, in addition to mortality statistics, as an outcome measure in comparisons of determinants of youth health between countries and over time.5 So far, many different approaches have been used to measure the prevalence and consequences of chronic diseases and health conditions in children, resulting in a wide variability of prevalence estimates that cannot be readily compared. Research on prevalence of chronic diseases in children is often focused on 1 or more specific diagnoses.7 An unequivocal definition of the concept of chronic health conditions in childhood has been lacking, and, as a consequence, operationalizations to measure the prevalence are diverse.

The aim of this article is to provide a systematic overview of all definitions and operationalizations that have been used to measure the prevalence of chronic health conditions in childhood. By operationalization, we mean all aspects of the methods of a prevalence study, including (1) the source of the information (eg, parents, medical files, or insurance data); (2) the instrument used to obtain the information (eg, questionnaire, interview, list of diagnosis codes, or computer query); and (3) the study population (eg, a representative sample of all noninstitutionalized children aged 0-18 years or all children registered in a hospital database).

Two literature searches were performed in MEDLINE using PubMed (complete database through December 2006) on the topic of definitions of chronic conditions in children, and 1 in Web of Science (1988 through December 2006). The search strategy is available from the corresponding author. In addition, we searched references by hand for related articles.

Articles that fulfilled the following inclusion criteria were included: (1) the main focus of the article was on children (ie, aged 0-18 years); (2) the definition concerned chronic conditions, excluding articles focusing on specified chronic conditions and on disability; and (3) the aim of the article was either to present a definition or to estimate the prevalence of chronic conditions in children. We excluded non-English and non-Dutch literature. Two of the authors (J.H.L. and L.B.M.) independently performed the selection of articles based on titles and abstracts retrieved in the 3 searches. When in doubt, the complete article was screened using the same criteria. The decision to include articles in this review was reached by consensus.

Information was extracted from the articles on (1) the conceptual definition; (2) the operationalization in terms of source of information, method of information retrieval, and study population; and (3) the resulting prevalence rate. Data were collected by J.H.L. and L.B.M. Only minor differences occurred, which were solved by discussion. All definitions and operationalizations were assessed in light of our aim of contributing to the development of a definition that could be used to make comparisons of the prevalence of chronic conditions in children between countries and at different points in time. We also tried to evaluate the influence of the following possible sources of variance on the reported prevalence rates: (1) the concept of chronic disease underlying the definition; (2) the operationalization of the definition; (3) the country; and (4) the year in which the study was performed.

The search yielded 7252 articles, of which 64 articles were included. All of the articles were in English, from 14 countries. Articles that did not comply with at least 1 of the inclusion criteria were excluded. Table 1 describes the most frequently cited definitions and Table 2 presents the prevalence studies with the operationalizations used. Table 3 describes articles in which a definition is presented with a different goal than to measure prevalence.

Table Graphic Jump LocationTable 1. Most Frequently Cited Definitions of Chronic Health Conditions in Childhood
Table Graphic Jump LocationTable 2. Operationalizations to Measure Prevalence of Chronic Health Conditions in Childhood
Table Graphic Jump LocationTable 3. Articles in Which Definitions Are Presented With a Different Goal Than to Measure Prevalence
Concepts and Definitions

Many different terms are used to denote the central concept, the most frequently used terms being chronic conditions, chronic health conditions, chronic illness, and (children with) special health care needs (Tables 1, 2, and 3). A conceptual definition was presented in 61 of the 64 articles; the clarity and theoretical basis of these definitions varies considerably. Many authors referred to 1 of the 4 definitions presented in Table 1, which were the most frequently measured concepts.810,12

The earliest definition concerned duration of disease and its impact on daily activities.8 The type and extent of impact of the condition on the child's functioning and health care needs is emphasized more in the later definitions of Perrin et al9 and Stein et al,10 while in the most recent definition of children with special health care needs, the types of conditions included are more extensive, even including “increased risk for a chronic condition,” whereas the impact is limited to “requiring health and related services.”12

An important issue for debate in the United States in the 1990s was the distinction between a conceptual definition based on a list of diagnoses and a noncategorical definition based on the duration and consequences of the condition of the child.9 The noncategorical approach was adopted as a reaction to the diagnosis-based approaches that had been used before to assign health care facilities and financing to individual children.10 Instead of a list of diagnoses, the basis of the noncategorical approach was the functional limitations resulting from the health condition, including dependency on medication, assistive devices, or medical care. In this way, the similarity of specific consequences of various diseases and conditions was taken into account.

Operationalization

Table 2 includes the 32 articles presenting operationalizations of the definitions (ie, the methods to measure prevalence) and the prevalence rates. The conceptual definitions vary considerably with regard to their clarity and comprehensiveness; sometimes they were not stated in the article.16,31 In 8 of the 32 articles in Table 2, data generated by the National Health Interview Survey were presented.11,13,18,21,23,26,30,34 The concepts and methods of the National Health Interview Survey have been adapted every 10 to 15 years since the first survey in 1957.76 Both the noncategorical approach and lists of diagnoses were used. Information was retrieved from interviews with parents11,13,1618,2123,26,30,32,34,40,41,44,46 or with the patients themselves,36 from medical examination of children,25,27 from claims files,33,35,45 or from medical records.19,20,24,32,39 Sometimes health care professionals were asked to report all designated children known to them, either based on medical records31 or without a specified method.14,15 One study combined prevalence data from several registries and earlier prevalence studies,29 and in another article an overview of surveys based on school samples in several countries was presented.42

The study population described in each article depended on the purpose of the study. General population samples were drawn in a systematic way in studies aiming at generating prevalence data13,17,18,21,23,26,30,49,50; other samples were used to answer different questions—eg, when comparing the lifestyles of adolescents with chronic conditions with those of their healthy peers.36

The prevalence rates varied from 0.22% for “medically fragile children” aged 0 to 19 years, a small subset of all children with special health care needs identified from North Carolina's Medicaid paid claims database,45 to 44% of children aged 0 to 18 years visiting an urban health center identified by a diagnosis list.32 Restriction to the terms chronic conditions, chronic health conditions, and chronic illness in the general population yielded a range in estimated prevalence rates from 3.49% of children younger than 16 years identified by public health nurses15 to 35.3% of youth 12 to 17 years old identified by a combination of parental history and physical examination.27

Influence of Possible Sources of Variance

Comparison of different operationalizations in the study by Rolnick et al39 showed variation in the resulting prevalence rates, from 11% when using the “clinical risk grouper” on administrative data to 37% when using the Questionnaire for Identifying Children With Chronic Conditions in telephone interviews in the same population. Prevalence differences due to source of information were found by Youngblade and Shenkman43 by comparing interviews with parents (17.8%) and adolescents (12.6%). Jessop and Stein27 found little overlap between children identified by physical examination and parental history. Not surprisingly, generally higher prevalence rates were reported in older children; eg, in the article by Vuorinen et al,22 a prevalence rate of 8.8% in 0- to 6-year-olds and 15% in 7- to 14-year-olds. There also appeared to be a time effect indicated by higher prevalence rates in more recent studies (Table 2).

Our review summarizes the current definitions and operationalizations of the concept of chronic conditions in childhood. The included articles contain a wide range of concepts, from “medically fragile children” to “children with special health care needs.” The large number of excluded articles (7188/7252) illustrates the difficulty of performing a specific literature search on such a broad concept as chronic health conditions in childhood. Because of the complexity of the concept and the diversity in methods used in studies on this subject, there is, at present, no such thing as a “proper way” to combine prevalence rates quantitatively. We attempted to use transparent and reproducible methods. However, a fair amount of judgment in selecting and appraising individual articles proved unavoidable because of the considerable variation in terminology, types of articles, and study designs that we found. This makes a systematic review of definitions, measurement methods, and prevalence rates of chronic health conditions in childhood less convenient than a systematic review of, for instance, randomized controlled intervention studies.

Only articles in English were included because none of the Dutch articles met all inclusion criteria. It is possible that the language restriction to English and Dutch resulted in omission of 1 or more existing definitions or operationalizations. Also, it is likely that national and international public health organizations assemble and report data based on diverse definitions that are not reported in the scientific journals indexed in MEDLINE or Web of Science. Most of the included articles (41/64) originate from the United States, raising the possibility of selection bias. Nevertheless, a clear conclusion of a current wide variability in concepts, operationalizations, and, as a consequence, prevalence rates can be drawn. This variability appeared not only due to variations in definitions (eg, whether noncategorical definitions or diagnosis lists are used) but also to diversity in operationalization of similar definitions, including the source of information (eg, parents or adolescents), whether interviews or medical records were used, the age of the study population, and the year in which a study was performed.

Newacheck et al18 suggested several possible causes for the apparent increase in prevalence rate in the National Health Interview Survey between 1960 and 1981, including the following: (1) prior screening using a checklist of conditions in the early years, thereby ignoring conditions not listed; (2) increased survival of neonates and older children with chronic illnesses; (3) deinstitutionalization of disabled children; and (4) increased availability of medical services for children. This suggests that at least part of the increase can be ascribed to changes in the definition and operationalization of the concept of chronic conditions in childhood. Whether the prevalence rates also vary between countries is unknown, since no studies were found in which the same definition and operationalization were applied to assess prevalence rates in different countries.

One would expect that the choice between a noncategorical definition and a list of conditions or diagnoses would have consequences for the operationalization. For example, medical records, except in rehabilitation settings, do not generally contain comprehensive information on children's functional limitations. Parents are not always able to state all medical diagnoses given to their child, while they do know his/her functional limitations well. However, surprisingly, several authors who adopted a noncategorical definition report use of medical files,62 and, vice versa, some authors use diagnosis lists in interviews.73 However, in several studies it seemed that the concept of what was measured was dictated by the methods by which data were gathered, rather than the other way around.18,50

When considering the variety of studies included in this review, one can conclude that the various concepts that authors have aimed to measure cannot be denoted by a single term. However, differences or similarities among the various concepts are not always transparent. For example, it is not difficult to understand that the group “medically fragile children” is a subsample of children with special health care needs, but even authors who used similar terms presented very diverse operationalizations and results. The variety in terms and operationalizations that we found shows that there is no consensus among researchers about concepts and definitions and that, in most articles, the only source of information on what exactly was measured is the methods section concerning the operationalization.

All conceptual definitions that are summarized in Table 1 incorporate the consequences of the chronic condition in terms of functional limitations and/or the need for medical or other care services. Theoretically, this leads to a lower measured prevalence compared with the prevalence of all children with 1 or more conditions that last longer than a certain period of time (usually 3 or 12 months). If the prevalence is measured with the aim of establishing the need for services, this is justified. However, comparisons between countries and within a country over time are hampered because the consequences of a chronic condition in terms of care needs or functional limitations vary according to cultural, educational, and financial circumstances and availability of treatment and care. For example, behavioral problems that might have been labeled as “bad behavior” in the past may now be diagnosed as attention-deficit/hyperactivity disorder, a chronic condition needing treatment. Or a young child in rural Africa may be considered lazy, whereas he or she might be diagnosed as having sickle cell disease if his/her parents had the time and money to go to an outpatient clinic.

Differences among studies in definitions and operationalizations can in part be ascribed to different goals with which these studies were performed. However, these differences are most often obscured by the use of an unstandardized terminology. Comparable with the International Classification of Functioning, Disability and Health, researchers in this field need a comprehensive framework of terminology. The International Classification of Functioning, Disability and Health is a revision of the International Classification of Impairments, Disabilities and Handicaps under the auspices of the World Health Organization (http://www3.who.int/icf/icftemplate.cfm). In this model, the components of functioning and disability can be classified in 3 different dimensions: body structures and functions, performance of activities, and participation in communal life.77 A comprehensive framework for chronic conditions should allow for differences in definitions related to different research goals. For instance, evaluation of the outcome of determinants of youth health, including pediatric medical care, calls for a different definition than planning for financing of social security and labor availabilities for young disabled people. The framework might consist of the following concepts:

  1. The most comprehensive level: children with chronic conditions (based on a list of diagnoses of chronic conditions based on the International Statistical Classification of Diseases, 10th Revision); essential components of a definition at this level are, in our opinion, that the disease can be diagnosed according to professional standards, a basic requirement to ensure validity, as well as an expected duration of at least 3 months or the impossibility of cure;

  2. A limitations-oriented second level, comprising a subset of the first level: children with limitations in ordinary activities due to chronic conditions;

  3. A health care use–oriented third level, a subset of levels 1 and 2: children with chronic conditions in need of medical care or related services in addition to what is usual for this age;

  4. The group “children with special health care needs” (who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and who also require health care and related services of a type or amount beyond that required by children generally) has a different background. There will be overlap with children with chronic conditions, but this definition also includes a group of children not included in any of the previous categories; ie, those who are at increased risk5 and would occupy a separate place in the framework.

More levels can be added when addressing subsets of conditions, severity levels, or specific limitations or needs.

Many prevalence studies or registries are concerned with a single disease entity. Simply adding up these prevalence rates disregards possible biases in methods and the possibility of comorbidity, since the units are diagnoses instead of individuals. National population-based surveys are the most useful data source for health state information, including information on chronic conditions in childhood. Since 1957, the National Health Interview Survey has been performed regularly in the United States. Data about chronic conditions in children have been collected by different types of questions, often in the absence of an underlying definition, thereby causing bias in longitudinal comparisons.14 To avoid this bias in future longitudinal and international comparisons, standardization is important, first of concepts and definitions and subsequently of operationalizations.

To evaluate the effects of determinants of child health, including perinatal and pediatric health care factors, and for the efficient planning of health care facilities and services for children and young adults with chronic conditions, valid and reliable prevalence estimates are needed. The wide variability in reported prevalence rates results from the considerable diversity in concepts and operationalizations in terms of source of information, method of information retrieval, and study population. To make valid international comparisons of this prevalence and comparisons over time, a first requirement is to achieve international consensus about the conceptual definition of chronic health conditions in childhood.

Corresponding Author: Johanna H. van der Lee, MD, PhD, Department of Pediatric Clinical Epidemiology, Emma Children's Hospital, Academic Medical Center, Room H3-144, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands (j.h.vanderlee@amc.uva.nl).

Author Contributions: Dr van der Lee had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: van der Lee, Mokkink, Grootenhuis, Heymans, Offringa.

Acquisition of data: van der Lee, Mokkink.

Analysis and interpretation of data: van der Lee, Mokkink.

Drafting of the manuscript: van der Lee, Mokkink.

Critical revision of the manuscript for important intellectual content: van der Lee, Mokkink, Grootenhuis, Heymans, Offringa.

Obtained funding: Grootenhuis, Heymans

Administrative, technical, or material support: van der Lee, Mokkink.

Study supervision: Grootenhuis, Heymans, Offringa.

Financial Disclosures: None reported.

Funding/Support: Financial support was obtained from the Dutch Ministry of Social Affairs and Employment.

Role of the Sponsor: The funder had no role in the design or conduct of the study; collection, management and interpretation of the data; or preparation, review, or approval of the manuscript.

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Martin C, Nisa M. Meeting the needs of children and families in chronic illness and disease: a greater role for the GP?  Aust Fam Physician. 1996;25:1273-1281
PubMed
Garwick AW, Patterson JM, Bennett FC, Blum RW. Parents' perceptions of helpful vs unhelpful types of support in managing the care of preadolescents with chronic conditions.  Arch Pediatr Adolesc Med. 1998;152:665-671
PubMed   |  Link to Article
Boekaerts M, Roder I. Stress, coping, and adjustment in children with a chronic disease: a review of the literature.  Disabil Rehabil. 1999;21:311-337
PubMed   |  Link to Article
Eiser C. Chronic Childhood Disease. Cambridge, England: Cambridge University Press; 1990
Cooper WO, Hickson GB, Gray CL, Ray WA. Changes in continuity of enrollment among high-risk children following implementation of TennCare.  Arch Pediatr Adolesc Med. 1999;153:1145-1149
PubMed   |  Link to Article
Perrin JM, Kuhlthau K, McLaughlin TJ, Ettner SL, Gortmaker SL. Changing patterns of conditions among children receiving Supplemental Security Income disability benefits.  Arch Pediatr Adolesc Med. 1999;153:80-84
PubMed   |  Link to Article
Silver EJ, Stein RE, Bauman LJ. Sociodemographic and condition-related characteristics associated with conduct problems in school-aged children with chronic health conditions.  Arch Pediatr Adolesc Med. 1999;153:815-820
PubMed   |  Link to Article
Feudtner C, Christakis DA, Connell FA. Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington State, 1980-1997.  Pediatrics. 2000;106:205-209
PubMed
Stein RE, Bauman LJ, Epstein SG, Gardner JD, Walker DK. How well does the questionnaire for identifying children with chronic conditions identify individual children who have chronic conditions?  Arch Pediatr Adolesc Med. 2000;154:447-452
PubMed   |  Link to Article
Dosa NP, Boeing NM, Ms N, Kanter RK. Excess risk of severe acute illness in children with chronic health conditions.  Pediatrics. 2001;107:499-504
PubMed   |  Link to Article
Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services.  Pediatrics. 2001;107:E99
PubMed   |  Link to Article
Spaite DW, Karriker KJ, Conroy C, Seng M, Battaglia N, Salik RM. Emergency medical services assessment and treatment of children with special health care needs before and after specialized paramedic training.  Prehospital Disaster Med. 2001;16:96-101
PubMed
Stein RE, Silver EJ, Bauman LJ. Shortening the questionnaire for identifying children with chronic conditions: what is the consequence?  Pediatrics. 2001;107:E61
PubMed   |  Link to Article
Stein REK. Challenges in long-term health care for children.  Ambul Pediatr. 2001;1:280-288
PubMed   |  Link to Article
Gallaher MM, Christakis DA, Connell FA. Health care use by children diagnosed as having developmental delay.  Arch Pediatr Adolesc Med. 2002;156:246-251
PubMed   |  Link to Article
Neff JM, Valentine J, Park A.  et al.  Trends in pediatric hospitalizations of children in Washington State by insurance and chronic condition status, 1991-1998.  Arch Pediatr Adolesc Med. 2002;156:703-709
PubMed   |  Link to Article
Perrin JM. Health services research for children with disabilities.  Milbank Q. 2002;80:303-324
PubMed   |  Link to Article
Geist R, Grdisa V, Otley A. Psychosocial issues in the child with chronic conditions.  Best Pract Res Clin Gastroenterol. 2003;17:141-152
PubMed   |  Link to Article
American Academy of Pediatrics Committee on Children With Disabilities and Committee on Psychosocial Aspects of Child and Family Health.  Psychosocial risks of chronic health conditions in childhood and adolescence.  Pediatrics. 1993;92:876-878
PubMed
McDougall J, Miller LT. Measuring chronic health condition and disability as distinct concepts in national surveys of school-aged children in Canada: a comprehensive review with recommendations based on the ICD-10 and ICF.  Disabil Rehabil. 2003;25:922-939
PubMed   |  Link to Article
Jee SH, Barth RP, Szilagyi MA, Szilagyi PG, Aida M, Davis MM. Factors associated with chronic conditions among children in foster care.  J Health Care Poor Underserved. 2006;17:328-341
PubMed   |  Link to Article
Farooqi A, Hagglof B, Sedin G, Gothefors L, Serenius F. Chronic conditions, functional limitations, and special health care needs in 10- to 12-year-old children born at 23 to 25 weeks' gestation in the 1990s: a Swedish national prospective follow-up study.  Pediatrics. 2006;118:e1466-e1477
PubMed   |  Link to Article
Stein REK, Siegel MJ, Bauman LJ. Are children of moderately low birth weight at increased risk for poor health? a new look at an old question.  Pediatrics. 2006;118:217-223
PubMed   |  Link to Article
Bloom B, Dey AN, Freeman G. Summary health statistics for US children: National Health Interview Survey, 2005.  Vital Health Stat 10. 2006(231);1-84
PubMed
Simeonsson RJ, Scarborough AA, Hebbeler KM. ICF and ICD codes provide a standard language of disability in young children.  J Clin Epidemiol. 2006;59:365-373
PubMed   |  Link to Article

Figures

Tables

Table Graphic Jump LocationTable 1. Most Frequently Cited Definitions of Chronic Health Conditions in Childhood
Table Graphic Jump LocationTable 2. Operationalizations to Measure Prevalence of Chronic Health Conditions in Childhood
Table Graphic Jump LocationTable 3. Articles in Which Definitions Are Presented With a Different Goal Than to Measure Prevalence

References

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Westbom L, Kornfalt R. Chronic illness among children in a total population: an epidemiological study in a Swedish primary health care district.  Scand J Soc Med. 1987;15:87-97
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PubMed   |  Link to Article
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PubMed   |  Link to Article
Palti H, Bendel J, Ornoy A. Prevalence of disabilities in a national sample of 7-year-old Israeli children.  Isr J Med Sci. 1992;28:435-441
PubMed
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PubMed
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PubMed   |  Link to Article
Jessop DJ, Stein RE. Consistent but not the same: effect of method on chronic condition rates.  Arch Pediatr Adolesc Med. 1995;149:1105-1110
PubMed   |  Link to Article
Pless IB, Pinkerton P. Chronic Childhood Disorders: Promoting Patters of Adjustment. St Louis, Mo: Mosby-Year Book; 1975
Vogel AM, Lennon D, Ameratunga SN, Holyoake J. Prevalence and impact of chronic childhood conditions in Auckland, New Zealand.  J Paediatr Child Health. 1996;32:484-490
PubMed   |  Link to Article
Newacheck PW, Halfon N. Prevalence and impact of disabling chronic conditions in childhood.  Am J Public Health. 1998;88:610-617
PubMed   |  Link to Article
Al-Eissa EI. The morbidity pattern among adolescents visiting primary health care centers.  Saudi Med J. 2000;21:934-937
PubMed
Kuhlthau KA, Beal AC, Ferris TG, Perrin JM. Comparing a diagnosis list with a survey method to identify children with chronic conditions in an urban health center.  Ambul Pediatr. 2002;2:58-62
PubMed   |  Link to Article
Neff JM, Sharp VL, Muldoon J, Graham J, Popalisky J, Gay JC. Identifying and classifying children with chronic conditions using administrative data with the clinical risk group classification system.  Ambul Pediatr. 2002;2:71-79
PubMed   |  Link to Article
Stein RE, Silver EJ. Comparing different definitions of chronic conditions in a national data set.  Ambul Pediatr. 2002;2:63-70
PubMed   |  Link to Article
Beers NS, Kemeny A, Sherritt L, Palfrey JS. Variations in state-level definitions: children with special health care needs.  Public Health Rep. 2003;118:434-447
PubMed   |  Link to Article
Miauton L, Narring F, Michaud PA. Chronic illness, life style and emotional health in adolescence: results of a cross-sectional survey on the health of 15-20-year-olds in Switzerland.  Eur J Pediatr. 2003;162:682-689
PubMed   |  Link to Article
Stein RE, Westbrook LE, Bauman LJ. The Questionnaire for Identifying Children With Chronic Conditions: a measure based on a noncategorical approach.  Pediatrics. 1997;99:513-521
PubMed   |  Link to Article
Stein REK, Jessop DJ. A noncategorical approach to chronic childhood illness.  Public Health Rep. 1982;97:354-362
PubMed
Rolnick SJ, Flores SK, Paulsen KJ, Thorson S. Identification of children with special health care needs within a managed care setting.  Arch Pediatr Adolesc Med. 2003;157:273-278
PubMed   |  Link to Article
Séguin L, Xu Q, Potvin L, Zunzunegui MV, Frohlich KL. Effects of low income on infant health.  CMAJ. 2003;168:1533-1538
PubMed
Spencer N, Coe C. Parent reported longstanding health problems in early childhood: a cohort study.  Arch Dis Child. 2003;88:570-573
PubMed   |  Link to Article
Surís JC. Chronic conditions and adolescence.  J Pediatr Endocrinol Metab. 2003;16:(suppl 2)  247-251
PubMed
Youngblade LM, Shenkman EA. Congruence between parents' and adolescents' reports of special health care needs in a Title XXI program.  J Pediatr Psychol. 2003;28:393-401
PubMed   |  Link to Article
McDougall J, King G, De Wit D.  et al.  Chronic physical health conditions and disability among Canadian school-aged children: a national profile.  Disabil Rehabil. 2004;26:35-45
PubMed   |  Link to Article
Buescher PA, Whitmire JT, Brunssen S, Kluttz-Hile CE. Children who are medically fragile in North Carolina: using Medicaid data to estimate prevalence and medical care costs in 2004.  Matern Child Health J. 2006;10:461-466
PubMed   |  Link to Article
Partington SN, Cisler RA, Blair KA. Prevalence of children with special health care needs in Milwaukee, Wisconsin: data from the Milwaukee metropolitan statistical area.  WMJ. 2006;105:30-35
PubMed
Hobbs N, Perrin JM, Ireys HT, Moynihan LC, Shayne MW. Chronically ill children in America.  Rehabil Lit. 1984;45:206-213
PubMed
Kaplan SL, Grossman P, Landa B, Shenker IR, Weinhold C. Depressive symptoms and life events in physically ill hospitalized adolescents.  J Adolesc Health Care. 1986;7:107-111
PubMed   |  Link to Article
Newacheck PW, Halfon N, Budetti PP. Prevalence of activity limiting chronic conditions among children based on household interviews.  J Chronic Dis. 1986;39:63-71
PubMed   |  Link to Article
Gortmaker SL, Walker DK, Weitzman M, Sobol AM. Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents.  Pediatrics. 1990;85:267-276
PubMed
Pless IB, Power C, Peckham CS. Long-term psychosocial sequelae of chronic physical disorders in childhood.  Pediatrics. 1993;91:1131-1136
PubMed
Knafl K, Breitmayer B, Gallo A, Zoeller L. Family response to childhood chronic illness: description of management styles.  J Pediatr Nurs. 1996;11:315-326
PubMed   |  Link to Article
Martin C, Nisa M. Meeting the needs of children and families in chronic illness and disease: a greater role for the GP?  Aust Fam Physician. 1996;25:1273-1281
PubMed
Garwick AW, Patterson JM, Bennett FC, Blum RW. Parents' perceptions of helpful vs unhelpful types of support in managing the care of preadolescents with chronic conditions.  Arch Pediatr Adolesc Med. 1998;152:665-671
PubMed   |  Link to Article
Boekaerts M, Roder I. Stress, coping, and adjustment in children with a chronic disease: a review of the literature.  Disabil Rehabil. 1999;21:311-337
PubMed   |  Link to Article
Eiser C. Chronic Childhood Disease. Cambridge, England: Cambridge University Press; 1990
Cooper WO, Hickson GB, Gray CL, Ray WA. Changes in continuity of enrollment among high-risk children following implementation of TennCare.  Arch Pediatr Adolesc Med. 1999;153:1145-1149
PubMed   |  Link to Article
Perrin JM, Kuhlthau K, McLaughlin TJ, Ettner SL, Gortmaker SL. Changing patterns of conditions among children receiving Supplemental Security Income disability benefits.  Arch Pediatr Adolesc Med. 1999;153:80-84
PubMed   |  Link to Article
Silver EJ, Stein RE, Bauman LJ. Sociodemographic and condition-related characteristics associated with conduct problems in school-aged children with chronic health conditions.  Arch Pediatr Adolesc Med. 1999;153:815-820
PubMed   |  Link to Article
Feudtner C, Christakis DA, Connell FA. Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington State, 1980-1997.  Pediatrics. 2000;106:205-209
PubMed
Stein RE, Bauman LJ, Epstein SG, Gardner JD, Walker DK. How well does the questionnaire for identifying children with chronic conditions identify individual children who have chronic conditions?  Arch Pediatr Adolesc Med. 2000;154:447-452
PubMed   |  Link to Article
Dosa NP, Boeing NM, Ms N, Kanter RK. Excess risk of severe acute illness in children with chronic health conditions.  Pediatrics. 2001;107:499-504
PubMed   |  Link to Article
Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services.  Pediatrics. 2001;107:E99
PubMed   |  Link to Article
Spaite DW, Karriker KJ, Conroy C, Seng M, Battaglia N, Salik RM. Emergency medical services assessment and treatment of children with special health care needs before and after specialized paramedic training.  Prehospital Disaster Med. 2001;16:96-101
PubMed
Stein RE, Silver EJ, Bauman LJ. Shortening the questionnaire for identifying children with chronic conditions: what is the consequence?  Pediatrics. 2001;107:E61
PubMed   |  Link to Article
Stein REK. Challenges in long-term health care for children.  Ambul Pediatr. 2001;1:280-288
PubMed   |  Link to Article
Gallaher MM, Christakis DA, Connell FA. Health care use by children diagnosed as having developmental delay.  Arch Pediatr Adolesc Med. 2002;156:246-251
PubMed   |  Link to Article
Neff JM, Valentine J, Park A.  et al.  Trends in pediatric hospitalizations of children in Washington State by insurance and chronic condition status, 1991-1998.  Arch Pediatr Adolesc Med. 2002;156:703-709
PubMed   |  Link to Article
Perrin JM. Health services research for children with disabilities.  Milbank Q. 2002;80:303-324
PubMed   |  Link to Article
Geist R, Grdisa V, Otley A. Psychosocial issues in the child with chronic conditions.  Best Pract Res Clin Gastroenterol. 2003;17:141-152
PubMed   |  Link to Article
American Academy of Pediatrics Committee on Children With Disabilities and Committee on Psychosocial Aspects of Child and Family Health.  Psychosocial risks of chronic health conditions in childhood and adolescence.  Pediatrics. 1993;92:876-878
PubMed
McDougall J, Miller LT. Measuring chronic health condition and disability as distinct concepts in national surveys of school-aged children in Canada: a comprehensive review with recommendations based on the ICD-10 and ICF.  Disabil Rehabil. 2003;25:922-939
PubMed   |  Link to Article
Jee SH, Barth RP, Szilagyi MA, Szilagyi PG, Aida M, Davis MM. Factors associated with chronic conditions among children in foster care.  J Health Care Poor Underserved. 2006;17:328-341
PubMed   |  Link to Article
Farooqi A, Hagglof B, Sedin G, Gothefors L, Serenius F. Chronic conditions, functional limitations, and special health care needs in 10- to 12-year-old children born at 23 to 25 weeks' gestation in the 1990s: a Swedish national prospective follow-up study.  Pediatrics. 2006;118:e1466-e1477
PubMed   |  Link to Article
Stein REK, Siegel MJ, Bauman LJ. Are children of moderately low birth weight at increased risk for poor health? a new look at an old question.  Pediatrics. 2006;118:217-223
PubMed   |  Link to Article
Bloom B, Dey AN, Freeman G. Summary health statistics for US children: National Health Interview Survey, 2005.  Vital Health Stat 10. 2006(231);1-84
PubMed
Simeonsson RJ, Scarborough AA, Hebbeler KM. ICF and ICD codes provide a standard language of disability in young children.  J Clin Epidemiol. 2006;59:365-373
PubMed   |  Link to Article

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