Resources & Publications
Common classifications of children with severe chronic illness and their illnesses.
Literature and decision aids
Schemes to reliably identify severe chronic illness in patient records and datasets
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Reviews of published literature relevant to children with severe chronic and critical illness.
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Classifications & Definitions
Severe Neurological Impairment: A delphi consensus-based definition. Allen J, Brenner M, Hauer J, Molloy E, McDonald D. Eur J Paediatr Neurol. 2020 Nov;29:81-86. PMID: 32951992
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Defining pediatric chronic critical illness for clinical care, research, and policy. Shapiro MC, Henderson CM, Hutton N, Boss RD. Hosp Pediatr 2017; 7:236–244. PMID: 28351944
Ways to identify children with medical complexity and the importance of why. Berry JG, Hall M, Cohen E, O'Neill M, Feudtner C. J Pediatr 2015; 167:229–237. PMID: 26028285
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Children with medical complexity: An emerging population for clinical and research initiatives. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R. Pediatrics 2011; 127:529–538. PMID: 21339266
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Pediatric deaths attributable to complex chronic conditions: A population-based study of Washington State, 1980-1997. Feudtner C, Christakis DA, Connell FA. Pediatrics 2000;106:205–209. PMID: 10888693
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U.S. Congress, Office of Technology Assessment, Technology-Dependent Children: Hospital v. Home Care–A Technical Memorandum, OTA-TM-H-38 (Washington, DC: U.S. Government Printing Office, May 1987). Available at: http://ota.fas.org/reports/8728.pdf.​​
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Identification Schemes
Complex Chronic Conditions
R Package for Pediatric Complex Chronic Condition Classification. Feinstein JA, Russell S, DeWitt PE, Feudtner C, Dai D, Bennett TD. JAMA Pediatr. 2018 Jun 1;172(6):596-598. PMID: 29710063
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Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. BMC Pediatr. 2014 Aug 8;14:199. PMID: 25102958
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​Chronic conditions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay. Edwards JD, Houtrow AJ, Vasilevskis EE, Rehm RS, Markovitz BP, Graham RJ, Dudley RA. Crit Care Med. 2012 Jul;40(7):2196-203. PMID: 22564961​​
Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Pediatrics. 2001 Jun;107(6):E99. PMID: 11389297
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Medical Complexity
Development and Validation of the Pediatric Medical Complexity Algorithm (PMCA) Version 3.0. Simon TD, Haaland W, Hawley K, Lambka K, Mangione-Smith R. Acad Pediatr. 2018 Jul;18(5):577-580. PMID: 29496546
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Development and Validation of the Pediatric Medical Complexity Algorithm (PMCA) Version 2.0. Simon TD, Cawthon ML, Popalisky J, Mangione-Smith R. Hosp Pediatr. 2017 Jul;7(7):373-377. PMID: 28634166
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Pediatric medical complexity algorithm: a new method to stratify children by medical complexity. Simon TD, Cawthon ML, Stanford S, Popalisky J, Lyons D, Woodcox P, Hood M, Chen AY, Mangione-Smith R. Pediatrics. 2014 Jun;133(6):e1647-54. PMID: 24819580
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Clinical Risk Groups
Stratification of children by medical complexity. Neff JM, Clifton H, Popalisky J, Zhou C. Acad Pediatr. 2015 Mar-Apr;15(2):191-6. PMID: 25468428​
Clinical Risk Groups (CRGs): a classification system for risk-adjusted capitation-based payment and health care management. Hughes JS, Averill RF, Eisenhandler J, Goldfield NI, Muldoon J, Neff JM, Gay JC. Med Care. 2004 Jan;42(1):81-90. PMID: 14713742
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High-intensity Neurologic Impairment
Children’s Hospital Association: High-Intensity Neurologic Impairment Codes. 2019. Available at: https://www.childrenshospitals.org/Research-and-Data/Pediatric-Data-and-Trends/2019/High-Intensity-Neurologic-Impairment-Codes.
Identification of Children With High-Intensity Neurological Impairment. Thomson JE, Feinstein JA, Hall M, Gay JC, Butts B, Berry JG. JAMA Pediatr. 2019 Oct 1;173(10):989-991. PMID: 31424541
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Trends in resource utilization by children with neurological impairment in the United States inpatient health care system: a repeat cross-sectional study. Berry JG, Poduri A, Bonkowsky JL, Zhou J, Graham DA, Welch C, Putney H, Srivastava R. PLoS Med. 2012 Jan;9(1):e1001158. PMID: 22272190
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Reviews
The Child With Severe Chronic Illness in the ICU: A Concise Review. Edwards JD, Goodman DM. Crit Care Med. 2022 May 1;50(5):848-859. PMID: 35234176
Chronic Illness in Pediatric Critical Care. Murphy Salem S, Graham RJ. Front Pediatr. 2021 May 14;9:686206. PMID: 34055702
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Hospitalist care of the medically complex child. Srivastava R, Stone BL, Murphy NA. Pediatr Clin North Am. 2005 Aug;52(4):1165-87. PMID: 16009262
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Tracheostomy/Long Term Ventilation Decision Making
Published Literature
Parent Perspectives on the Child Experience of Pediatric Home Ventilation via Tracheostomy. Hosp Pediatr. 2023 Dec 1;13(12):1124-1133. PMID: 37964652
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Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation.
Boss RD, Vo HH, Jabre NA, Shepard J, Mercer A, McDermott A, Lanier CL, Ding Y, Wilfond BS, Henderson CM. PEC Innov. 2023 Jun 7;2:100173. PMID: 37384158
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"What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation. Shipman KJ, Mercer AH, Raisanen JC, Jabre NA, Vo HH, Miles A, Shepard J, Henderson CM, Boss RD, Wilfond BS. J Palliat Med. 2023 Jul;26(7):930-940. PMID: 36662553
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Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling. Bogetz JF, Munjapara V, Henderson CM, Raisanen JC, Jabre NA, Shipman KJ, Wilfond BS, Boss RD. Dev Med Child Neurol. 2022 Jul;64(7):840-846. PMID: 35080259
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Parent perspectives on facilitating decision-making around pediatric home ventilation. Jabre NA, Raisanen JC, Shipman KJ, Henderson CM, Boss RD, Wilfond BS. Pediatr Pulmonol. 2022 Feb;57(2):567-575. PMID: 34738745
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Life with pediatric home ventilation: Expectations versus experience. Henderson CM, Raisanen JC, Shipman KJ, Jabre NA, Wilfond BS, Boss RD. Pediatr Pulmonol. 2021 Oct;56(10):3366-3373. PMID: 34310864
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Family Experiences Deciding For and Against Pediatric Home Ventilation. Boss RD, Henderson CM, Raisanen JC, Jabre NA, Shipman K, Wilfond BS. J Pediatr. 2021 Feb;229:223-231. PMID: 33068566
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Decisions for Long-Term Ventilation for Children. Perspectives of Family Members. Edwards JD, Panitch HB, Nelson JE, Miller RL, Morris MC. Ann Am Thorac Soc. 2020 Jan;17(1):72-80. PMID: 31437013
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Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs. Edwards JD, Morris MC, Nelson JE, Panitch HB, Miller RL. Ann Am Thorac Soc. 2017 Oct;14(10):1539-1547. PMID: 28530141
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Decision Aids
Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation. Vo HH, Wilfond BS, Ding Y, Henderson CM, Raisanen JC, Ashwal G, Thomas A, Jabre NA, Shipman KJ, Schrooten A, Shaffer J, Boss RD. Patient Educ Couns. 2023 Sep;114:107855. PMID: 37348312
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Development and validation of a novel informational booklet for pediatric long-term ventilation decision support. Edwards JD, Panitch HB, George M, Cirrilla AM, Grunstein E, Wolfe J, Nelson JE, Miller RL. Pediatr Pulmonol. 2021 May;56(5):1198-1204. PMID: 33305899