Prevalence of Life-Threatening Conditions in Children

Abstract

Objective: We estimated the prevalence of children with life-threatening conditions (LTC) cared for in the military health system (MHS) in response to a Congressional inquiry and to inform program planning. Methods: We developed a case definition of LTC, using the concept ‘‘death trajectory’’^1,2 to define our cases. We conducted an unduplicated count of children with LTC in the MHS database during FY 2001/FY 2002 using selected ICD-9 codes based on our case definition. We then surveyed the literature for reported prevalence of LTC among children with similar case definitions. The concept of ‘‘death trajectory’’ describes non-categorical life-threatening conditions of four types: progressive decline to death (e.g., spinal muscular atrophy); intermittent periods of intensive care to maintain quality-of-life (e.g., cystic fibrosis); curative treatment is possible but may fail (e.g., childhood cancers); and severe but non-progressive disability with extreme health vulnerability (e.g., spastic quadriplegia with tracheotomy). Results: There were 3,976 children identified with LTC in a population of 2.6 million children, for a prevalence of 0.15%. Conclusion: A prevalence of 0.15% for children with LTC in the MHS population agrees closely with that derived for similar case definitions by other authors among populations of children in other single-payer health care systems (i.e., United Kingdom). The method used here may apply to similar health care systems with ICD 9 codes in a searchable database.

Keywords

hospice palliative care prevalence life-threatening conditions in children death trajectory children

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References

ACT/RCPCH. A Guide to the Development of Children’s Palliative Care Services. Report of the Joint Working Party. 1st ed. London, England: ACT/RCPCH (Association for Children with Life-Threatening Conditions and their Families/Royal College of Pediatrics and Child Health); 1997.

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(6):E99.

van der Lee JH , Mokkink LB , Grootenhuis MA , Heymans HS , Offringa M. Definitions and measurement of chronic health conditions in childhood: a systematic review . JAMA. 2007;297(24): 2741-2751.

Davies R. Establishing need for palliative care services for children/young people. Br J Nurs. 2003;12(4):224-232.

Himelstein BP , Hilden JM , Boldt AM , Weissman D. Pediatric palliative care. N Engl J Med. 2004;350(17):1752-1762.

Zarbock S. , ed. CHI Program for All-Inclusive Care for Children and Their Families . 2nd ed. Alexandria, Virginia : Children’s Hospice International; 2003.

American Academy of Pediatrics. Palliative care for children. Pediatrics. 2000;106(2):351-357.

Bethell CD , Read D. , Blumberg SJ , Newacheck PW What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Matern Child Health J. 2008 ;12(1):1-14.

Davidoff AJ Identifying children with special health care needs in the National Health Interview Survey: a new resource for policy analysis. Health Serv Res. 2004;39(1):53-71.

10.

Newacheck PW , Halfon N. Prevalence and impact of disabling chronic conditions in childhood. Am J Public Health. 1998; 88(4):610-617.

11.

ACT/RCPCH. A Guide to the Development of Children’s Palliative Care Services. 2nd ed. London, England: The Association for Children wtih Life-Threatening Terminal Conditions annd their Families (ACT) and the Royal College of Paediatrics and Child Health; 2003.

12.

Lenton S. , Stallard P. , Lewis M. , Mastroyannopoulou K. Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood. Child Care Health Dev. 2001;27(5):389-398.

13.

Maguire H. Assessment of Need of Life-Limited Children in Northern Ireland. Newtownabbey, UK: Northern Ireland Children’s Hospice; 2000.

14.

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(1):71-79.

15.

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(3): 273-278.

16.

Stein RE , Silver EJ Comparing different definitions of chronic conditions in a national data set . Ambul Pediatr. 2002;2(1): 63-70.

17.

Institute of Medicine. When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. Washington, DC: The National Academies Press; 2003.

18.

SAS Software, version 9.1, SAS Institute, Inc., Cary, NC 27513; 2003.

19.

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(5):461-466.

20.

ChIPPS. Children’s International Project on Palliative/Hospice Services (ChiPPS). A Call for Change: Recommendations to Improve the Care of Children Living with Life-Threatening Conditions: National Hospice and Palliative Care Organization, Alexandria, Virginia; 2001.

21.

Feudtner C. , DiGiuseppe D. , Neff J. Hospital care for children and young adults in the last year of life: a population-based study. BMC Med . 2003;1(1):8.

22.

Ramnarayan P. , Craig F. , Petros A. , Pierce C. Characteristics of deaths occurring in hospitalised children: changing trends. J Med Ethics. 2007 ;33(5):255-260.

23.

Meyer E. , Burns J. , Griffith J. , Troug R. Parental perspectives on end-of-life care in the pediatric intensive care unit. Critical Care Med. 2002;30(1):226-231.

24.

O’Malley KJ , Cook KF , Price MD , Wildes KR , Hurdle JF , Ashton CM Measuring diagnoses: ICD code accuracy. Health Serv Res. 2005 ;40(5pt2):1620-1639.