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  • Measure Summary
  • NQMC:006162
  • Oct 2000

Children with special health care needs: percentage of children who meet criteria for having special health care needs according to the Children with Special Health Care Needs Screener (CSHCN Screener).

Child and Adolescent Health Measurement Initiative (CAHMI). Approaches to identifying children and adults with special health care needs. A resource manual for state Medicaid agencies and managed care organizations. Baltimore (MD): Child and Adolescent Health Measurement Initiative (CAHMI); 2002. various p.

View the original measure documentation External Web Site Policy

This is the current release of the measure.

The measure developer reaffirmed the currency of this measure in October 2015.

Primary Measure Domain

Related Population Health Measures: Population Health State

Secondary Measure Domain

Does not apply to this measure

Description

This measure is used to efficiently identify children with ongoing physical, mental, behavioral or other conditions who also require a type or amount of health and related services beyond that required by children generally.

The CSHCN Screener is a five item, parent-reported tool which identifies children who currently experience one or more of five common health consequences: (1) use or need of prescription medication; (2) above average use or need of medical, mental health or educational services; (3) functional limitations compared with others of same age; (4) use or need of specialized therapies (occupational therapist [OT], physical therapist [PT], speech, etc.); (5) needs treatment or counseling for emotional, behavioral, or developmental problems. Any of the 5 health consequences must be due to a physical, mental, behavioral or other type of health condition which has lasted or is expected to last at least 12 months. The questions are designed to be self-administered or telephone administered as part of a parent/caretaker survey. The screener takes approximately one minute to administer for a single child and an average of two minutes to complete when screening all children in a household.

English and Spanish language versions of the screening tool are available.

Rationale

Children with special health care needs (CSHCN) are an important population of interest for health care services, economic health analyses, and policy development and implementation. CSHCN often have limited access to health care or do not receive all needed health services because of their elevated need for health care due to having a wide range of chronic illnesses, disabilities and other health problems. Thus, early identification, follow-up, and potential case management are essential to improve their quality of life. Also, continuity and coordination of care and utilization of appropriate payment mechanisms cannot be ensured unless these individuals are accurately identified. Providing appropriate services based on early identification may reduce the cost of treating children with special needs. A single, approved standardized screening instrument to identify CSHCN required for Federal and State program planning and evaluation was developed to monitor CSHCN health status and provide quality of care as mandated in the Title V of the Social Security Act.

The CSHCN Screener was developed to reflect the federal Maternal and Child Health Bureau's (MCHB) consequences-based definition of children with special health care needs: "Children who have special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."

The CSHCN Screener tool focuses on the current consequences of chronic health conditions. The non-condition specific approach used by the CSHCN Screener identifies children across the range and diversity of childhood chronic conditions and special needs, allowing a more comprehensive assessment of health care system performance than is attainable by focusing on a single diagnosis or type of special need. In addition, the relatively low prevalence of most childhood chronic conditions and special health care needs often makes it problematic to find adequate numbers of children with a specific diagnosis or type of special need. A non-condition specific approach makes it possible in many cases to identify enough children to allow statistically robust quality comparisons across health care systems and/or providers.

Evidence for Rationale

Child and Adolescent Health Measurement Initiative (CAHMI). Approaches to identifying children and adults with special health care needs. A resource manual for state Medicaid agencies and managed care organizations. Baltimore (MD): Child and Adolescent Health Measurement Initiative (CAHMI); 2002. various p.

Primary Health Components

Children with chronic or special health care needs; consequence-based criteria screening

Denominator Description

Children less than or equal to 17 years of age whose parent/caretaker completed the Children with Special Health Care Needs Screener (CSHCN Screener)

Numerator Description

Children who currently experience one or more of the following common health consequences:

  1. Use or need of prescription medication
  2. Above average use or need of medical, mental health or educational services
  3. Functional limitations compared with others of same age
  4. Use or need of specialized therapies (occupational therapy [OT], physical therapy [PT], speech, etc.)
  5. Needs treatment or counseling for emotional, behavioral, or developmental problems

AND

The above mentioned consequence results from a chronic physical, developmental, behavioral, emotional or any kind of health condition lasting or expected to last for at least 12 months.

Type of Evidence Supporting the Criterion of Quality for the Measure

  • A formal consensus procedure, involving experts in relevant clinical, methodological, public health and organizational sciences
  • One or more research studies published in a National Library of Medicine (NLM) indexed, peer-reviewed journal

Additional Information Supporting Need for the Measure

  • Nationally, 19.8% of children ages 0 to 17 years meet criteria having special health care needs according to National Surveys (National Survey of Children's Health [NSCH], National Survey of Children with Special Health Care Needs [NS-CSHCN], Medical Panel Expenditure Survey [MEPS]) conducted between 2011 and 2012.
  • According to the 2011-12 National Survey of Children's Health (NSCH):
    • Children with special health care needs (CSHCN) are less likely to receive care within a medical home — only 46.8% of CSHCN receive such coordinated and ongoing care, compared with 56.3% of children living without special needs.
    • Boys are more likely to have special health care needs than girls — 22.5% versus 17.0%, respectively.
    • CSHCN are more likely than non-CSHCN to have public health insurance — 43.44% of CSHCN have public insurance, compared to 35.5% of non-CSHCN.
    • More children who live in families with income of below poverty level have special health care needs. 20.8% of children living in families with 0 to 99% federal poverty level (FPL) have special health care needs, compared with 19.2% to 19.9% of children living in families with above 100% FPL.
    • Children who live in families with two biological or adoptive parents are less likely to have special health care needs (16.4%), compared to the children who live in families of two parents with at least one step-parent (27%) and single mother (26.2%).
  • According to the 2011-12 National Survey of Children's Health (NSCH):
    • Children with special health care needs (CSHCN) aged 6 to 17 are twice as likely to repeat a grade in school than non-CSHCN (14.9% versus 7.2%, respectively).
    • CSHCN aged 6 to 17 are nearly 4 times as likely to miss 11 or more school days a year due to illness or injury compared to non-CSHCN (14.9% versus 3.5%, respectively).
  • 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN) indicates that:
    • 21.6% of CSHCN live in families where their conditions have caused financial problems for the family.
    • 25.0% of CSHCN live in families where one or more members had to cut back or stop working due to children's condition.
    • These adverse child and family-level impacts were concentrated among low-income and uninsured CSHCN.
  • Complexity of CSHCN:
    • 91.2% of CSHCN have one or more functional difficulties. More specifically, of CSHCN with functional difficulties 68.9% have bodily difficulties, 60.5% activity and participation difficulties and 58.8% other emotional and behavioral difficulties.
    • 60.7% of CSHCN have more complex needs that require multidisciplinary care team, and/or specialized services beyond prescription medications.
    • 57.1% of CSHCN experience multiple (two or more) current chronic health conditions from the specified 21 conditions.
  • Use of health care for children with special health care needs (CSHCN) compared to non-CSHCN:
    • Four times the number of hospitalizations (89 versus 22 discharges per 1000)
    • Spent more than 7 times as many days in hospitals (370 versus 49 days per 1000) and more than half (52.5%) of children's hospital days were accounted for CSHCN
    • More than twice as many physician visits annually (4.35 versus 1.75)
    • Seven times more non-physician visits (2.17 versus 0.30) annually
    • More than 5 times the number of prescribed medications per year (6.94 versus 1.22)
    • Used substantially more home health provider days (1.73 versus 0.002); approximately 87% of home health care days were accounted for by CSHCN
  • Medical expenditure for children with special health care needs (CSHCN) compared to non-CSHCN (MEPS):
    • Total health care expenditures 3 times more ($2099 versus $628)
    • Hospital care expenses 4 times higher ($361 versus $96)
    • Physician services expenses more than double the amount ($406 versus $150)
    • Six times greater non-physician services expenses ($144 versus $24)
    • Average expenditures on prescribed medications 10 times higher ($340 versus $34)
    • Average expenditures for other medical services were about twice ($37 versus $16)
  • Families of CSHCN are 2 to 3 times more likely to have high out-of-pocket expenses (greater than $1000 per year, greater than 5% of family income). Children in households with incomes less than 200% of the federal poverty level (FPL) spent about 164% more of their family's income on health care, and those living in households with incomes between 200% and 400% of the FPL spent about 46% more than their counterparts in households with incomes at or above 400% of the FPL.
  • Medical expenditures for CSHCN who qualify on 4 of the 5 screener domains are almost four times those of CSHCN who qualify on only one screening criterion ($7881 versus $1952, respectively).

Evidence for Additional Information Supporting Need for the Measure

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 Jan;12(1):1-14. PubMed External Web Site Policy

Bramlett MD, Read D, Bethell C, Blumberg SJ. Differentiating subgroups of children with special health care needs by health status and complexity of health care needs. Matern Child Health J. 2009 Mar;13(2):151-63. PubMed External Web Site Policy

National Survey of Children with Special Health Care Needs: Interactive data search of the 2005/06 data. Available at: http://www.cshcndata.org/DataQuery/SurveyAreas.aspx?yid=2. [internet]. Child and Adolescent Health Measurement Initiative; [accessed 2011 Mar 03].

National Survey of Children with Special Health Care Needs: Interactive data search of the 2011/12 data. Available at: http://childhealthdata.org/browse/survey/results?q=2625&r;=1. [internet]. Child and Adolescent Health Measurement Initiative; [accessed 2013 Oct 22].

Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med. 2005 Jan;159(1):10-7. PubMed External Web Site Policy

van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med. 2004 Sep;158(9):884-90. PubMed External Web Site Policy

Extent of Measure Testing

Over 36,000 cases of CSHCN Screener data were collected during development of the CSHCN Screener. Testing included administration in commercial and Medicaid managed care, Medicaid Fee-for-Service, and primary care case management populations. The Screener was also fielded in two national samples of households with children during pre-testing for the National Survey of CSHCN sponsored by the federal Maternal and Child Health Bureau.

Results from the CSHCN Screener have been compared with the Questionnaire to Identify Children with Chronic Conditions (QuICCC-R) and the 3M Clinical Risk Groups (3M/CRG) clinical classification system, medical chart reviews and parental reports of their children's specific health conditions, service needs and utilization levels. Overall, the CSHCN Screener identified numbers of children commensurate with other epidemiological studies of special health care needs. The screener did not systematically exclude categories of children according to the type and/or severity of their health conditions, and exhibited a high level of agreement with other methods. Good internal psychometric properties of responses to the CSHCN Screener and minimal random measurement error of the Screener was identified on the study using data from 2009-2010 NS-CSHCN (e.g., Cronbach's coefficient α level greater than .80).

Since initial development of the Screener, over 1 million cases of screener data have been collected through the NS-CSHCN (735,357), NSCH (193, 995) and MEPS (84,020) and have been used to continuously reassess its performance and validity.

Evidence for Extent of Measure Testing

Bethell CD, Read D, Neff J, Blumberg SJ, Stein RE, Sharp V, Newacheck PW. Comparison of the children with special health care needs screener to the questionnaire for identifying children with chronic conditions--revised. Ambul Pediatr. 2002 Jan-Feb;2(1):49-57. PubMed External Web Site Policy

Bethell CD, Read D, Stein RE, Blumberg SJ, Wells N, Newacheck PW. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr. 2002 Jan-Feb;2(1):38-48. PubMed External Web Site Policy

Blumberg SJ, Olson L, Frankel M, Osborn L, Becker CJ, Srinath KP, Giambo P. Design and operation of the National Survey of Children with Special Health Care Needs, 2001. Vital Health Stat 1. 2003 Jun;(41):1-136. PubMed External Web Site Policy

Carle AC, Blumberg SJ, Poblenz C. Internal psychometric properties of the children with special health care needs screener. Ambul Pediatr. 2010 Mar 13;:Epub ahead of print. PubMed External Web Site Policy

Child and Adolescent Health Measurement Initiative (CAHMI). Approaches to identifying children and adults with special health care needs. A resource manual for state Medicaid agencies and managed care organizations. Baltimore (MD): Child and Adolescent Health Measurement Initiative (CAHMI); 2002. various p.

Read D, Bethell C, Blumberg SJ, Abreu M, Molina C. 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 Nov;11(6):568-85. PubMed External Web Site Policy

State of Use

Current routine use

Current Use

Decision-making by managers about resource allocation

External oversight/Indian Health Service

External oversight/Maternal and Child Health Bureau

External oversight/Medicaid

External oversight/Regional, county, or city agencies

External oversight/State government program

Monitoring and planning

Monitoring health state(s)

National health policymaking

National reporting

State/Provincial health policymaking

Measurement Setting

Ambulatory/Office-based Care

Ancillary Services

Behavioral Health Care

Community Health Care

Emergency Department

Emergency Medical Services

Home Care

Hospital Inpatient

Hospital Outpatient

Managed Care Plans

Rehabilitation Centers

Residential Care Facilities

Rural Health Care

Substance Use Treatment Programs/Centers

Professionals Involved in Delivery of Health Services

Does not apply to this measure (e.g., measure is not provider specific)

Least Aggregated Level of Services Delivery Addressed

Individual Clinicians or Public Health Professionals

Statement of Acceptable Minimum Sample Size

Unspecified

Target Population Age

Ages less than or equal to 17

Target Population Gender

Either male or female

Public Health Aims for Quality

Population-centered

IOM Care Need

Not within an IOM Care Need

IOM Domain

Not within an IOM Domain

Case Finding Period

Unspecified

Denominator Sampling Frame

Geographically defined

Denominator (Index) Event or Characteristic

Patient/Individual (Consumer) Characteristic

Denominator Time Window

Does not apply to this measure

Denominator Inclusions/Exclusions

Inclusions
Children less than or equal to 17 years of age whose parent/caretaker completed the Children with Special Health Care Needs Screener (CSHCN Screener)

Exclusions
Adults 18 years of age and older

Exclusions/Exceptions

Does not apply to this measure

Numerator Inclusions/Exclusions

Inclusions
Children who currently experience one or more of the following common health consequences:

  1. Use or need of prescription medication
  2. Above average use or need of medical, mental health or educational services
  3. Functional limitations compared with others of same age
  4. Use or need of specialized therapies (occupational therapy [OT], physical therapy [PT], speech, etc.)
  5. Needs treatment or counseling for emotional, behavioral, or developmental problems

AND

The above mentioned consequence results from a chronic physical, developmental, behavioral, emotional or any kind of health condition lasting or expected to last for at least 12 months.

Exclusions
Children age 0 to 17 years who do not meet any of the five criteria for having a special health care need

Numerator Search Strategy

Fixed time period or point in time

Data Source

Patient/Individual survey

Type of Health State

Individually Reported Health State

Instruments Used and/or Associated with the Measure

Children with Special Health Care Needs Screener (CSHCN Screener)

Measure Specifies Disaggregation

Does not apply to this measure

Scoring

Rate/Proportion

Interpretation of Score

Desired value is a lower score

Allowance for Patient or Population Factors

Analysis by high-risk subgroup (stratification by vulnerable populations)

Analysis by subgroup (stratification by individual factors, geographic factors, etc.)

Description of Allowance for Patient or Population Factors

No stratification is required.

The Children with Special Health Care Needs Screener (CSHCN Screener) administered in its most recent form (in the 2009/10 National Survey of Children with Special Health Care Needs [NS-CSHCN] and 2011/12 National Survey of Children's Health [NSCH]) includes a number of child demographic variables that allow for stratification of the findings by possible vulnerability:

  • Age
  • Gender
  • Geographic location: State, HRSA Region, National-level Rural Urban Commuter Areas (RUCA)
  • Race/ethnicity
  • Health insurance: status, type, consistency, adequacy
  • Primary household language
  • Household income
  • Family structure: Two biological or adoptive parents, two parents with at least one step-parent, mother only and other
  • Special Health Care Needs type

Standard of Comparison

External comparison at a point in, or interval of, time

External comparison of time trends

Internal time comparison

Original Title

Children with special health care needs screener (CSHCN Screener).

Submitter

Child and Adolescent Health Measurement Initiative - Nonprofit Organization

Developer

Child and Adolescent Health Measurement Initiative - Nonprofit Organization

Funding Source(s)

The CSHCN Screener was initially supported by The David and Lucile Packard Foundation and validation and re-assessment of the Screener were funded by the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), the National Center for Health Statistics (NCHS) and the Centers for Medicare & Medicaid Services (CMS) of the Department of Health and Human Services.

Composition of the Group that Developed the Measure

Principal Investigator: Christina Bethell, PhD, Child and Adolescent Health Measurement Initiative (CAHMI), Oregon Health & Science University

Senior Research Associate: Debra Read, MPH, Child and Adolescent Health Measurement Initiative (CAHMI), Oregon Health & Science University

The Living with Illness Task Force:

  • Barbara Anderson, MD, Joslin Diabetes Center
  • Julie Brown, PhD, RAND Corporation
  • Treeby Brown, Association of Maternal & Child Health Programs
  • Paul Cleary, PhD, Harvard Medical School
  • Christine Crofton, PhD, Agency for Healthcare Research and Quality
  • Charles Darby, Agency for Healthcare Research and Quality
  • Larry C. Deeb, MD, Children's Clinic
  • Sue Dull, National Association of Children’s Hospitals and Related Institutions
  • Susan Epstein, New England SERVE
  • Jack Fowler, PhD, University of Massachusetts
  • Shirley Girouard, PhD, RN, FAAN
  • Maxine Hayes, MD, Washington State Department of Health
  • Ron Hays, PhD, RAND Corporation
  • John Hochheimer, PhD, National Committee for Quality Assurance
  • Charles Homer, MD, MPH, Institute for Healthcare Improvement
  • Henry Ireys, PhD, Johns Hopkins University
  • Peggy McManus, Maternal & Child Health Policy Research Center
  • Merle McPherson, MD, Maternal and Child Health Bureau
  • John Meurer, MD, Medical College of Wisconsin

Special Health Care Needs Advisory Committee:

  • Rodney Armstead, MD, FACP, Medical Diagnostic Management, Inc.
  • Marcie Goldstein, MA, CESSI, Inc.
  • Michael Hendryx, PhD, Washington State University
  • Lynda Honberg, MHSA, HRSA, MCHB
  • Mark Hornbrook, PhD, Kaiser Center for Health Research
  • Jill Pierce, National Mental Health Association
  • Jeremy Kisch, PhD, National Mental Health Association
  • Donald Lollar, Ed.D, Centers for Disease Control and Prevention
  • Kate Lorig, RN, DrPH, Stanford University School of Medicine
  • Dann Milne, PhD, Colorado Department of Health Care Policy and Financing
  • David Nerenz, PhD, Michigan State University
  • Paul Newacheck, DrPH, UC San Francisco Medical Center
  • James O'Leary, PhD, Blue Cross Blue Shield Association of America
  • Estelle Richman, MA, City of Philadelphia
  • Carole Steiner, MHCA, CalOptima
  • Albert Wu, MD, MPH, Johns Hopkins University

Financial Disclosures/Other Potential Conflicts of Interest

None

Adaptation

This measure was not adapted from another source.

Date of Most Current Version in NQMC

2000 Oct

Measure Status

This is the current release of the measure.

The measure developer reaffirmed the currency of this measure in October 2015.

Source(s)

Child and Adolescent Health Measurement Initiative (CAHMI). Approaches to identifying children and adults with special health care needs. A resource manual for state Medicaid agencies and managed care organizations. Baltimore (MD): Child and Adolescent Health Measurement Initiative (CAHMI); 2002. various p.

Measure Availability

Source available from the Child and Adolescent Health Measurement Initiative (CAHMI) Web site External Web Site Policy.

For more information, contact CAHMI at 615 North Wolfe Street, Room E4640, Baltimore, MD 21205; Phone: 410-955-1848; Fax: 503-494-2473; E-mail: info@cahmi.org: Web site: www.cahmi.org External Web Site Policy.

Companion Documents

The following is available:

  • Bethell CD, Blumberg SJ, Stein RE, Strickland B, Robertson J, Newacheck PW. Taking stock of the CSHCN screener: a review of common questions and current reflections. Acad Pediatr. 2015 Mar-Apr;15(2):165-76.

NQMC Status

This NQMC summary was completed by ECRI Institute on February 23, 2011. The information was verified by the measure developer on April 12, 2011.

This NQMC summary was retrofitted into the new template on July 29, 2011.

The information was reaffirmed by the measure developer on October 27, 2015.

Copyright Statement

This NQMC summary is based on the original measure, which is subject to the measure developer's copyright restrictions.

Copyright Data Resource Center (DRC) for Child and Adolescent Health, an initiative of the Child and Adolescent Health Measurement Initiative (CAHMI).

The CAHMI quality measure tools (including sampling, administration, analysis, and reporting specifications) are available for free on the CAHMI's Data Resource Center Web site (www.childhealthdata.org External Web Site Policy). All CAHMI quality measures are copyrighted by the CAHMI. Should you use any of the material from NQMC, please reference it appropriately.

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