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Department of Health and Human Services; Centers for Medicare and Medicaid Services. State health official letter on the children’s health care quality measures. SHO 11–001. Available at: http://downloads.cms.gov/cmsgov/archived-downloads/SMDL/downloads/SHO11001.pdf.
Public Law 111-148, Section 2703. March 23, 2010. Available at: http://www.gpo.gov/fdsys/pkg/PLAW-111publ148/pdf/PLAW-111publ148.pdf.
Agency for Healthcare Research and Quality. Pediatric Quality Measures Program (PQMP) Centers of Excellence grant awards. Available at: http://www.ahrq.gov/policymakers/chipra/pubs/pqmpfact.html.
Centers for Medicare and Medicaid Services. Children’s Health Insurance Program Reauthorization Act (CHIPRA) of 2009. Public Law 111–113. Available at: http://www.gpo.gov/fdsys/pkg/PLAW-111publ3/html/PLAW-111publ3.htm. Accessed January 1, 2010.
- Report to Congress: Approaches for Identifying, Collecting, and Evaluating Data on Health Care Disparities in Medicaid and CHIP.Department of Health and Human Services, Washington, DC2011 (Available at:)Accessed September 2011)
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Oregon Health Authority. Diagnosis codes for ACA-qualified conditions from patient-centered primary care home program. Updated March 7, 2012.
- 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: 1-14
Child and Adolescent Health Measurement Initiative; FACCT—The Foundation for Accountability. The children with special health care needs consumer quality measurement module CAHPS/AHRQ submitter’s kit. May 2001. Available at: http://childhealthdata.org/identifying-cshcn.
- Comparison of the children with special health care needs screener to the questionnaire for identifying children with chronic conditions—revised.Ambul Pediatr. 2002; 2: 49-57
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- How well does the QuICCC identify individual children who have chronic conditions?.Arch Pediatr Adolesc Med. 2000; 154: 447-452
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FACCT—The Foundation for Accountability. Comparison of case finding questions by conceptual domain. 2000. Available at: http://childhealthdata.org/identifying-cshcn.
NCQA Technical Advisory Group. Pediatric Living With Illness Screener and Supplemental Survey Module (LWIM). Prepared October 1999, Revised May 2000. Available at: http://childhealthdata.org/identifying-cshcn.
- The changing landscape of disability in childhood.Future Child. 2012; 22: 13-42
- [Prevalence and characteristics of children and youth with special health care needs (CSHCN) in the German Health Interview and Examination Survey for Children and Adolescents (KiGGS)].Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2007; 50: 750-756
- The performance of the screener to identify children with special health needs in an European sample of children with chronic conditions.Eur J Pediatr. 2004; 163: 517-523
- The effects on person-level versus household-level questionnaire design on survey estimates and data quality.Public Opin Q. 2001; 65: 574-584
Child and Adolescent Health Measurement Initiative Advisory Committee; CAHMI Living With Illness Task Force. 2.5H Child Survey: a method for modifying the CAHPS 2.0H Child Survey to measure experience of care for children with ongoing health conditions. Measure work-up. Available at: http://childhealthdata.org/identifying-cshcn.
Bethell C, Newacheck P. Memo to NCQA Technical Advisory Group: Recommended measure for children with chronic conditions. October 19, 1999. Available at: http://childhealthdata.org/identifying-cshcn.
National Committee for Quality Assurance. NCQA Endorsement of Children with Ongoing Health Needs (CSHCN) module: HMOS Focus on Quality of Children’s Health Care Quality. October 2000. Available at: http://childhealthdata.org/identifying-cshcn.
- Methods for improving regression analysis for skewed continuous or counted responses.Annu Rev Public Health. 2007; 28: 95-111
- Approaches to Identifying Children and Adults with Special Health Care Needs: A Resource Manual for State Medicaid Agencies and Managed Care Organizations.Centers for Medicare and Medicaid Services, Washington, DC2002 (Available at:)
- A Portrait of Adolescents in America, 2001.FACCT—The Foundation for Accountability, Portland, Ore2001 (Available at:)
- Chronic Childhood Disorder: Promoting Patterns of Adjustment.Year Book Medical Publishers, Chicago, Ill1975
- Issues involved in the definition and classification of chronic health conditions.Pediatrics. 1993; 91: 787-793
- What diagnosis does not tell: the case for a noncategorical approach to chronic illness in childhood.Soc Sci Med. 1989; 29: 769-778
Child and Adolescent Health Measurement Initiative. 2009/10 NS-CSHCN: Prevalence of specific difficulties among CSHCN with each condition. Data Resource Center, 2012. Available at: http://childhealthdata.org/docs/cshcn/functional-difficulties-by-condition_2009-10.pdf.
- Internal psychometric properties of the Children With Special Health Care Needs Screener.Acad Pediatr. 2011; 11: 128-135
- Evaluation of National Health Interview Survey diagnostic reporting.Vital Health Stat 2. 1994; 120: 1-116
- A comparison of household and medical provider reports of medical conditions.in: Cox B. Cohen S. Methodological Issues for Health Care Surveys. Marcel Dekker Inc, New York, NY1985: 150-189
- Using existing population-based data sets to measure the AAP definition of Medical Home for all children and children with special health care needs.Pediatrics. 2004; 113: 1529-1537
- Conceptualizing childhood health problems using survey data: a comparison of key indicators.BMC Pediatr. 2007; 5: 7-40
Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health. Nationwide disparities snapshot: children with special health care needs. National Survey of Children’s Health, 2007. Available at: http://www.childhealthdata.org/browse/snapshots/nsch-profiles/performance?geo=1. Accessed April 9, 2012.
- Children With Special Health Care Needs in Context: A Portrait of States and the Nation. The National Survey of Children’s Health, 2007.Dept of Health and Human Services, Rockville, Md2011
Bethell C, Read D. Taking stock of the CSHCN Screener: MEPS longitudinal comparison of CSHCN status and disability over time. Child and Adolescent Health Measurement Initiative; 2006. Available at: http://childhealthdata.org/identifying-cshcn.
- Consistent but not the same: effects of method on chronic conditions rates.Arch Pediatr Adolesc Med. 2010; 149: 1105-1110
- Expenditures for care of children with chronic illnesses enrolled in the Washington State Medicaid program, fiscal year 1993.Pediatrics. 1997; 100: 197-204
- Mental health in the United States: health care and well being of children with chronic emotional, behavioral, or developmental problems—United States, 2001.MMWR Morb Mortal Wkly Rep. 2005; 54: 985-989
Wilhelm C, Bethell C, Newacheck PN, Strickland BS. Advancing methods to measure and promote health and quality of care for children at risk for special health care needs. Child and Adolescent Health Measurement Initiative White Paper, April 2014.
Child and Adolescent Health Measurement Initiative. 2009/10 NS-CSHCN: Comorbidity of conditions and difficulties among CSHCN. Data Resource Center, 2012. Available at: http://childhealthdata.org/docs/cshcn/conditions-difficulties-09cshcn_feb-2-2012.pdf.
National Survey of Children With Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health. Available at: www.childhealthdata.org. Accessed February 25, 2013.
Drew JA. Does the FACCT Special Health Care Needs Screener produce biased estimates of children with chronic conditions? Poster Presentation at: Population Association of America, Los Angeles, CA. March 30-April 1, 2006.
- Hispanic children with special health care needs from Spanish-language households.Pediatrics. 2010; 126: S120-S128
- An evaluation of the linguistic and cultural validity of the Spanish language version of the Children With Special Health Care Needs Screener.Matern Child Health J. 2007; 11: 568-585
- Seeking and obtaining mental health services: what do parents expect?.Arch Psychiatr Nurs. 2001; 15: 223-231
- Understanding the Hispanic paradox.Ethn Dis. 2001; 11: 496-518
Child and Adolescent Health Measurement Initiative. Who are children with special health care needs? Data Resource Center, 2012. Available at: http://childhealthdata.org/docs/nsch-docs/whoarecshcn_revised_07b-pdf.pdf.
National Survey of Children’s Health. NSCH 2007. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health. Available at: http://www.childhealthdata.org. Accessed October 22, 2012.
- Quality improvements in primary care for children with special health care needs: use of a brief screening measure.Child Health Care. 2003; 32: 273-285
- Differentiating subgroups of children with special health care needs by health status and complexity of health care needs.Matern Child Health J. 2009; 13: 151-163
- Child health care in changing times.Pediatrics. 1998; 101: 746-752
- The doctor’s dilemma: challenges for the primary care physician caring for the child with special health care needs.Ambul Pediatr. 2002; 2: 218-223
- Children with complex chronic conditions in inpatient hospital settings in the United States.Pediatrics. 2010; 126: 647-655
- Increasing prevalence of medically complex children in US hospitals.Pediatrics. 2010; 126: 638-646
- Hospital-based comprehensive care programs for children with special health care needs: a systematic review.Arch Pediatr Adolesc Med. 2011; 165: 554-561
- Impact of children with medically complex conditions.Pediatrics. 2010; 126: 789-790
Child Development and Rehabilitation Center (CDRC). Establishing an integrated and collaborative program to improve health outcomes for children with complex special health care needs (C-CSHCN) through coordinated pediatric tertiary care and community-based services. Proposal to state Medicaid program. Final, January 2012.
- Assessing Children’s Well-Being: A Handbook of Measures.Lawrence Erlbaum Associates, Mahwah, NJ2004
- CAHPS 2.0 Surveys.Agency for Healthcare Research and Quality, Rockville, Md1998
- Research Consortium on Children with Chronic Conditions (RCCCC): a vehicle for interdisciplinary collaborative research.Matern Child Health J. 2010; 14: 9-19
Neff JM; FACCT—The Foundation for Accountability. Living with illness field trial: National Association of Children’s Hospitals and Related Institutions (NACHRI) condition list and Living With Illness Screener status results. FACCT LWIM Field Trial Final Report, 1999. Available at: http://childhealthdata.org/identifying-cshcn.
- Identifying and classifying children with chronic conditions using administrative data with the clinical risk group classification system.Ambul Pediatr. 2002; 2: 71-79
- Using the National Health Interview Survey and Medical Expenditures Panel Survey to Assess the Use and Impact of Complementary and Alternative Medicine for Children in the US: A Meta-Data Methods Summary Report.Child and Adolescent Health Measurement Initiative, Baltimore, Md2012
- A national and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations.Acad Pediatr. 2011; 11: S22-S33
American Recovery and Reinvestment Act (ARRA). Title XIII: Health Information Technology for Economic and Clinical Health Act (HITECH). Available at: http://www.hitechanswers.net/about/about-arra/. Accessed November 25, 2014.
Department of Health and Human Services; Centers for Medicare and Medicaid Services. Medicare and Medicaid programs—electronic health record incentive program, stage 2, 2012. Available at: http://www.himss.org/files/HIMSSorg/content/files/2012-21050_PI.pdf.
The authors declare that they have no conflict of interest.