The CSHCN Screener Key Findings, Methods Issues, and its Relationship with Well-Being

Stephen J. Blumberg, PhDChristina D. Bethell, PhD, MBA

Paul W. Newacheck, DrPH

The CSHCN ScreenerKey Findings, Methods Issues, and its

Relationship with Well-Being

Centers for Disease Control and PreventionNational Center for Health Statistics

27 July 20113rd Conference of the International

Society for Child Indicators University of York

Children with Special Health Care Needs

The CSHCN ScreenerKey Findings, Methods Issues, and its

Relationship with Well-Being

Centers for Disease Control and PreventionNational Center for Health Statistics

27 July 20113rd Conference of the International

Society for Child Indicators University of York

U.S. National Survey ofChildren’s Health (NSCH)

Dates: 2003, 2007, 2011 Conducted by: National Center for Health Statistics Purpose: Produce estimates on the health and well-

being of children, families, & their communities Sample: Independent random-digit-dial (RDD) samples

for all 50 states & the District of Columbia (DC) Random selection: One child 0 – 17 years of age

selected from each household with children to be the subject of the interview

Goal: Complete interviews for over 91,000 children nationally (goal: 1,700 completed per state & DC)

Respondent: Parent or guardian

NSCH Sponsor

Has primary responsibility for promoting and improving the health of U.S. women, children and families.

Provides leadership to improve the physical and mental health, safety and well-being of the MCH population

Administers block grants to state MCH agencies

Title V MCH Block Grants

The US federal government budgets more than $1 billion annually for MCH services

In order to be entitled to payments, states must use at least 30 percent of such payment amounts for services for children with special health care needs (CSHCN)

Why CSHCN?– CSHCN account for 42% of total medical care costs

(excluding dental costs)

Definition of“Children with Special Health Care Needs”

“Children with 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.” (McPherson, Arango, Fox, et al., 1998)

Home Environment Indicators

CSHCN Non-CSHCN4+ family meals together per week 76.0% 77.1%

No tobacco smoke in home 89.9% 93.0%

Watch less than 2 hours of TV per day 45.7% 49.4%

No television in bedroom (age 6-17) 45.6% 51.1%

Parent met all/most friends (6-17) 79.7% 80.9%

Usually/always does all homework (6-17) 77.4% 88.9%

Ever breastfed (age 0-5) 68.3% 76.5%

Told stories or sung to every day (0-5) 65.4% 58.2%

All of the above 22.7% 30.1%

Data Source: NSCH, 2007

Neighborhood and School Indicators

CSHCN Non-CSHCNUsually/always engaged in school 69.5% 83.7%

Never repeated a grade 81.5% 91.8%

Participate in after school activities 77.2% 81.7%

Usually/always safe at school 88.8% 89.8%

Usually/always safe in community 84.4% 86.4%

Live in supportive neighborhood 80.4% 83.9%

Safe and supportive 48.6% 51.8%


Indicators Related to Social Behaviors, Activities, and Family

CSHCN Non-CSHCNAge 6-17:

Has problematic social behaviors 17.9% 6.2%

Lacks consistent positive social skills 12.3% 4.6%

No vigorous physical activity 13.2% 9.5%

Does not get adequate sleep daily 41.1% 34.1%

All ages:Mother’s health less than very good 52.2% 41.0%

Father’s health less than very good 41.8% 36.3%

Does not share ideas or talk to parents about things that matter

37.4% 28.1%

Parents usually/always stressed 20.0% 7.9%


Definition of“Children with Special Health Care Needs”

“Children with special health care needs are those who have ... 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.” (McPherson, Arango, Fox, et al., 1998)

Special Health Needs Continuum

No special healthcare needs

At risk for developing a special health care need

On going health conditions;above average service use needs;few to moderate functionallimitations

On going healthconditions; high or complexservice use needs; moderateto severe functional limitations

GROUP BGROUP A GROUP C(A + B + C)

MOST INCLUSIVE DEFINITIONSinclude “at risk” groups

BROADER DEFINITIONSinclude those with wider array of

conditions, levels of severityand service use needs

(B + C)

NARROWER DEFINITIONSinclude only those with

very severe conditions or highlycomplex needs

(C only)

Defining Special Health Care Needs

What is the CSHCN Screener? A non-condition-specific, consequences-based method for

identifying CSHCN, targeting Categories B and C Designed in 1998-2000 by the Child and Adolescent

Health Measurement Initiative (now at OHSU) Developed through a national process involving

physicians, state leaders, families, methods experts, and policymakers

Tested with parents of 36,000+ children during development phase

Several versions tested, leading to final version, which takes 1 minute for parents to complete

Data for more than 1 million children analyzed since 2000

The CSHCN Screener

Asks about five “common” consequences1. Limitation of activities2. Need for or use of prescription medication3. Need for or use of specialized therapies4. Above routine need or use of medical, mental

health, or education services5. Need for or receipt of treatment or counseling

for an emotional, behavioral, or developmental problem

(Bethell, Read, Stein, Blumberg, Wells, & Newacheck, 2002)

The CSHCN Screener

Two follow-up questions1. Is this due to a medical, behavioral, or other

health condition?2. Is this a condition that has lasted or is expected

to last 12 months or longer?

(Bethell, Read, Stein, Blumberg, Wells, & Newacheck, 2002)

Key Features of CSHCN Screener

Based on parent report– Most amenable to uniform data collection

Short (1 minute to complete)– Costs per item are usually high in government surveys– Longer surveys threaten participation rates

Based on consequences rather than conditions– Condition checklists tend to be very long– Condition checklists are hard to analyze and interpret– Focus on consequences helps capture children with

conditions not yet diagnosed or poorly recalled

Group id’d byCSHCN Screener

SURVEY PARENTS- Ask about specific health services children need or use- Ask about child health status & impact of any health problems

SURVEY PARENTS- Ask to name any specific diagnoses or health conditions children have

CLINICAL EVALUATION- Review of children’s medical charts by pediatric clinicians

MEDICAL RECORDS- Examine encounter & claims data for diagnoses listed in children’s records

COMPARE to:- CYSHCN identified by other methods or definitions such as program eligibility- Children not identified

“Triangulate” to Validate

Cross-Method Comparisons

Over 93% of identified CSHCN had at least one specific chronic health condition or problem, and most had two or more

Over 98% of identified CSHCN had some type of functional difficulty, as defined by the International Classification of Functioning (ICF)

Who is Identified by the Screener?

All or nearly all children with complex health conditions such as:– Cerebral palsy; cystic fibrosis; muscular dystrophy– Rare metabolic or genetic disorders– Mental retardation; developmental delay; autism– Sickle cell anemia; Down Syndrome; diabetes

Only those children whose asthma, ADHD, allergies, or other conditions result in:– Elevated service use,– Long-term use of prescription medicine, or– Limitations in functioning

Who is Missed by the Screener?

The CSHCN Screener is likely to miss children who have only:– Food or environmental allergies– Special diet (e.g., lactose intolerance)– Vision problems (e.g., amblyopia, colorblindness)– Developmental delays early in life

Some parents of children with speech problems, learning disabilities, developmental delay, and conduct problems report consequences but then say they are not due to “health conditions”

Over-Identification?

Should ongoing need for only prescription medication be considered a special need?

Should children with only asthma or allergies be considered CSHCN?

CSHCN with only Rx needs

CSHCN with only asthma or

allergies

Non-CSHCN

Mean # of doctor visits in past year

4.1 4.5 2.3

% with 2+ hospital emergency visits

13.9 16.2 4.8

Data Source: NS-CSHCN, 2005-2006

Survey-Based Uses of the CSHCN Screener in the U.S.

National Survey of CSHCN (NS-CSHCN) National Survey of Children’s Health (NSCH) Medical Expenditure Panel Survey (MEPS) Consumer Assessment of Health Plans Survey

(CAHPS)

Prevalence Differences by Survey

12.8%13.9%

17.6%19.2% 19.3% 18.8%

0%

5%

10%

15%

20%

Prevalence of CSHCN in United States

Data Sources: see legend

NS

-CS

HC

N 2

001

NS

-CS

HC

N 2

005-

06

NS

CH

200

3

NS

CH

200

7

ME

PS

200

1

ME

PS

200

4

Why Might Prevalence Rates Differ Across Surveys?

Dates of data collection

Method of data collection and estimation– Mode– Sampling frame– Interviewers– Weighting methods

Sample size and sampling error

Method of identification– Respondent– Recall period– Question wording– Question ordering– Question context

and introduction

Percent of CSHCN with Each Consequence Type, by Survey

0%

20%

40%

60%

80%

100%

PrescriptionMedications

Service Use /Need

FunctionalLimitations

SpecialTherapies

Mental Health

NS-CSHCN 2001 NS-CSHCN 2005-2006NSCH 2003 NSCH 2007MEPS 2001 MEPS 2004

Data Sources: see legend

Demographic DifferencesPrevalence by Age

8.8%

16.0% 16.8%

0%2%4%6%8%

10%12%14%16%18%

0-5 Years 6-11 Years 12-17 Years

Prevalence by Sex

16.1%

11.6%

0%2%4%6%8%

10%12%14%16%18%

Male Female

Prevalence by Income

14.0% 14.0% 13.5% 14.0%

0%2%4%6%8%

10%12%14%16%18%

0-99% FPL 100-199%FPL

200-399%FPL

400% + FPL

Prevalence by Race/ Ethnicity

15.5% 15.0%

8.3%

0%2%4%6%8%

10%12%14%16%18%

Non-HispanicWhite

Non-HispanicBlack

Hispanic


Prevalence by Race/Ethnicity and Primary Language at Home

4.6%

13.1%15.6%

0%

5%

10%

15%

20%

Hispanic / Spanish Hispanic / English NH White / English


Prevalence by Race/Ethnicity and Primary Language at Home

0%

3%

6%

9%

12%

15%

PrescriptionMedications

Service Use /Need

FunctionalLimitations

SpecialTherapies

Mental Health



Prescription Medication Orders Filled, by Ethnicity and Language of Interview

36.8%

0.8%

45.8%

5.4%

54.5%

6.2%

0%

10%

20%

30%

40%

50%

60%


Data Source: MEPS, 2004

Percent of Children with Any Prescription

Medication Orders

Percent of Children with Any Psychiatric Medication Orders

Thanks to Byron A. Foster, Oregon Health and Science University.

The CSHCN Screener

Reliably identifies children requiring on-going medical and other health-related services

Can be used to stratify children into meaningful subgroups related to condition complexity

Is sensitive to health care practice patterns (such as those related to cultural differences)

Yields results that can be influenced by differences in survey administration

Provides a key health indicator that is related to the home environment and the well-being of children and their families

Documents

The CSHCN Screener Key Findings, Methods Issues, and its Relationship with Well-Being