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Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national data sets Presented by Christina Bethell, PhD, MBA, MPH Oregon Health and Science University School of Medicine The Child and Adolescent Health Measurement Initiative Co-Authors: Christina Bethell, PhD, Debra Read, MPH, Stephen Blumberg, PhD, Paul Newacheck, Dr. Ph AcademyHealth Annual Research Meeting June 27 2005 Boston Massachusetts
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Page 1: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national data sets

Presented by Christina Bethell, PhD, MBA, MPHOregon Health and Science University School of MedicineThe Child and Adolescent Health Measurement Initiative

Co-Authors: Christina Bethell, PhD, Debra Read, MPH, Stephen Blumberg, PhD, Paul Newacheck, Dr. Ph

AcademyHealth Annual Research Meeting

June 27 2005

Boston Massachusetts

Page 2: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Purpose

• To describe variations in prevalence and characteristics of children and youth with special health care needs across three national surveys that used the same identification method (CSHCN Screener)

1. National Survey of Children with Special Health Care Needs (2001)

2. Medical Expenditures Panel Survey (2000 and 2002)3. National Survey of Children’s Health (2003)

• Explore survey methodology and real changes in prevalence and/or practice patterns across survey years that may account for observed differences

Page 3: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

CSHCN Screener

• Developed to operationalize the federal MCHB definition of CYSHCN

• “Children with special health care needs are children who have or are at 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.”

Page 4: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

CSHCN Screener

• Five item consequences-based, parent reported screening tool that is not based on a condition check-list or ICD-9/10 diagnostic codes

• Identifies children and youth who currently experience one or more of five health or health need consequences due to an ongoing health condition. • Current use of RX meds for ongoing condition

• Above routine use of medical, mental or other type of health services for ongoing condition

• Need or use specialized therapies for ongoing condition

• Need or use treatment or counseling for an ongoing emotional, developmental or behavioral health condition

• Functional difficulties/problem doing things other children his/her age can do due to ongoing condition

Page 5: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Analytic Methods1. Qualitative comparison of the design, sampling and

administration of NS-CSHCN, NSCH and MEPS2. Compare CSHCN Identification Rates

– Overall and by demographic subgroups of children– By CSHCN Screener qualifying criteria and number of

criteria met– By type of health and health need consequences

experienced by CSHCN once they are identified

3. Probability of Identification Across Surveys• Logistic regression to assess association between

identification and demographic factors • Adjusted odds ratios calculated for age, sex, race/ethnicity,

household income

Page 6: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Analytic Methods

4. CSHCN Screener Administration “Anchoring” Differences Between 2001 NS-CSHCN and MEPS 2000

– Compare NS-CSHCN rates for only households with one child to MEPS 2000 in order to isolate the potential impact of difference in CSHCN Screener applications • NS-CSHCN--all children in household screened

simultaneously, no priming questions on child’s health

• MEPS 2000--all children in household screened separately, no priming questions on child’s health

Page 7: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Analytic Methods

5. Impact of Practice Pattern Changes– CSHCN increase between 2000 and 2002 MEPS

largely driven by increased identification on Q1: Current use of RX meds for ongoing condition.

– We confirmed whether there was also an increase in documented RX meds between 2000 and 2002--especially “chronic” use (5 or more RX meds/refills in a year).• Validity check for the CSHCN Screener

• May indicate real increases in treatment of chronic conditions with prescription medications between 2000 and 2002

Page 8: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Results: Methods Comparison Summary of Key Methods Differences

• Sampling– All children in household (NS-CSHCN and

MEPS) vs. target child (NSCH)– Random digit dial/SLAITS (NS-CSHCN

and NSCH) vs. panel design/NHIS (MEPS)– NS-CSHCN and NSCH sampled to allow

for state level estimates. MEPS does not allow state estimates to be made.

• Mode– Mail (MEPS 2000) – CATI (NS-CSHCN and NSCH) – CAPI (MEPS 2002)

Page 9: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Results: Methods Comparison Summary of Key Methods Differences

• Survey Design and Administration– Question order differed between NS-CSHCN and NSCH

and MEPS– Incentives used for NSCH and not NS-CSHCN or MEPS– Preceding survey items about child’s health for MEPS 2002

(5 items) and NS-CH (3 items) and not NS-CSHCN or MEPS 2000

– Screening approach was simultaneous for NS-CSHCN and was conducted for each child separately for MEPS and NSCH

– Overall framing for screening • NS-CSHCN: screen and then survey (“If yes, then longer

survey”)• NSCH: screening in context of survey • MEPS 2000: Screening conducted in context of longer

mailed survey on child’s health care• MEPS 2002: screener part of much longer survey on adult

and child health

Page 10: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Results: CSHCN Identification Rates

• Total Children Screened– NS-CSHCN 2001 -372,174 children age 0-17

– MEPS 2000 - 6418 children age 0-17 at end of survey year

– MEPS 2002 - 11,490 children age 0-17

– NSCH 2003 - 102,353 children age 0-17

• CSHCN Identified– 2001 NS-CSHCN – 12.8% -- 48,690 children

– MEPS 2000 – 16.2% -- 956 children

– MEPS 2002 – 19.4% -- 2096 children

– 2003 NSCH – 17.6% -- 18,561 children

Page 11: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Results: CSHCN Identification Rates by Child and Family Characteristics?

Category

NS-CSHCN vs. MEPS and NSCH 13

of 15 possible differences

MEPS 2002 vs.2003 NSCH 2 of 15

possible differences

All ChildrenYes, NS-CSHCN

Lower No

By AgeNS-CSHCN Lower All

GroupsMEPS higher 12-17

age only

By SexNS-CSHCN Lower All

Groups No

By Race/Ethnicity

NS-CSHCN Lower White, Black,

HispanicMEPS slightly higher

White only

By HH IncomeNS-CSHCN Lower All

Groups No

Page 12: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Results: Probability of Identification by Demographic Groups

• While rates are lower for NS-CSHCN, the probability of identification according to age, sex, race/ethnicity and household income is largely stable across all three surveys (less than .5 AOR differences across surveys)– Age (vs. age 0-5)

• 6-11: 2.03-2.21 Adjusted Odds Ratios (sig)

• 12-17: 2.17-2.57 Adjusted Odds Ratios (sig)

– Sex (vs. male)• Female: .66-.76 Adjusted Odds Ratios (sig)

Page 13: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Results: Probability of Identification by Demographic Groups

– Race (vs. White)• Hispanic: .78-.87 Adjusted Odds Ratios (sig. for all but

MEPS 2002)

• Black: .83-.88 (nearly sig)

– Income (vs. 400% + FPL)• 0-99%: 1.00-1.47 AOR (sig NS-CSHCN only)

• 100-199%: 1.06-1.20 AOR (sig NS-CSHCN only)

• 200-399%: .92-.95 AOR (not sig)

Page 14: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Results: Do CSHCN Identification Rates Differ Significantly By Proportion Identified for Each

Qualifying Criteria

CSHCN Qualifying Criteria

2001 NS-CSHCN vs. MEPS 2002 and 2003

NSCH MEPS 2002 vs. 2003 NSCH

Q1: RX MedsNo (MEPS near sig. 1.2%

higher)

Q2: Elevated Service Need/Use No

Q3: Functional Limitations No

Q4: Specialized TherapiesNo (MEPS near sig. .5%

higher)

Q5: Trt/Counseling for Emot., Behav., Develp. Problem

No (MEPS near sig. .6% higher)

Yes, NS-CSHCN lower

Page 15: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

CSHCN Identification Rate By CSHCN Screener Qualifying Criteria

• Rank of the probability of identification by CSHCN Screener question is the same across all three surveys– Q1 – most likely (RX meds)

– Q2 – 2nd most likely (elevated need/use)

– Q5: - 3rd most likely (trt for emot., devel., behav. problem)

– Q3: -4th most likely (functional limitations)

– Q4 – least likely (specialized therapies)

Page 16: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Summary of CSHCN Identification Rate By Child Characteristics, Qualifying Criteria, and

Number and Type of Consequences

• Virtually all significant differences in rates of identification by demographic characteristics, qualifying criteria and number or type consequences are accounted for by lower rates on NS-CSHCN.

• While rates for NS-CSHCN are lower, conclusions regarding the probability of identification as CSHCN remain largely stable across all surveys

• NSCH and MEPS 2002 do not differ significantly in nearly all cases evaluated.

• When NSCH and MEPS 2002 are different, MEPS 2002 is ALWAYS just slightly higher (possible conditioning and priming effects?)

Page 17: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Summary of CSHCN Identification Rate By Child Characteristics, Qualifying Criteria, and

Number and Type of Consequences

• Once identified, we do not observe any significant differences in proportion identified by number of qualifying criteria across surveys

• Once, identified, we observe that CSHCN identified across all three surveys have the same likelihood of experiencing functional limitations

• Once identified, we do observe that CSHCN identified via the NS-CSHCN – are slightly more likely to have an elevated need or use for

services AND need/use of RX meds (complexity higher?)

– are slightly less likely to have need or use of RX meds as their ONLY health or health care need consequence

Page 18: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Testing the “Anchoring” Hypothesis by Comparing 2001 NS-CSHCN Rates for Single

Child Households to MEPS 2000

• Comparison to MEPS 2000 selected as a comparison to 2001 NS-CSHCN because – a substantial proportion of NS-CSHCN data was collected in 2000

– MEPS 2000 did not include health related priming questions (did include health care use questions, however)

– MEPS 2000 (vs. MEPS 2002) child survey was conducted separate from large adult and child household survey making it more similar to NS-CSHCN in this regard

• NS-CSHCN subset to single child households to remove the “comparing your children” effect of simultaneous (all children at once) CSHCN Screener administration – MEPS 2000 provided a separate survey for each child in the

household

Page 19: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Result: Statistical Difference Between 2001 NS-CSHCN and MEPS 2000 Nearly Eliminated

2001 NS-CSHCN Single Child Households Only

MEPS 2000

Overall Rate 14.2 (13.8-14.6) 16.2 (14.7-17.7)

Q1: RX Meds 11% (10.7-11.4) 11.8% (10.8-12.9)

Q2: Elevated Service Need/Use

6.3% (6.1-6.6) 6.8% (6.0-7.7)

Q3: Functional Limitations3.4% (3.2-3.6) 4% (3.2-5.0)

Q4: Specialized Therapies2.2% (2.0-2.4) 3.2% (2.7-3.8)

Q5: Trt/Counseling for Emot., Behav., Develp. Problem

3.9% (3.7-4.1) 6.2% (5.2-7.3)

Page 20: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Assessing Practice Pattern Changes Between Survey Years as Explanation for Increased CSCHN Rates

• Compare MEPS 2000 and MEPS 2002– Same sampling frame and same survey

– Objective data on the count and names of prescription medications children taken is available for both years

• CSHCN identification rates up 3.1% points– MEPS 2000: 16.2%

– MEPS 2002: 19.4% (increase entirely in 6-11 age group)

• 81.3% of the increase is accounted for by increased identification on Q1: Current use of prescription medications for an ongoing condition– 2.6 point increase in population identification on Q1 between

2000 and 2002

Page 21: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Assessing Practice Pattern Changes Between Survey Years as Explanation for Increased CSCHN Rates

• Increase in RX Meds use 2000-2002– All Children: 3.5 point increase in ANY RX Meds

(49.7 to 53.3%)

– CSHCN: 6 point increase in ANY RX Meds (78.8-84.8%)

– Non-CSHCN: .1 point increase in ANY RX Meds (not sig)

• Increase virtually entirely accounted for by CYSHCN

Page 22: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

Assessing Practice Pattern Changes Between Survey Years as Explanation for Increased CSCHN Rates

• 75% of increase in RX Meds accounted for by an increase in “5 or more medications/refills”. – .9% increase in children/youth with 1-4

medications/refills– 2.6% increase in children/youth with 5 or more

medications/refills

• Increase disproportionately accounted for by CYSCHN age 12-17.– 37% increase in 5+ RX Meds use (13.9-17.3

points) between 2000 and 2002 vs. 4.1-6.5 points for the younger age groups.

Page 23: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

ConclusionsCSHCN Screener is picking up what appear to be real

practice pattern changes between 2000 and 2002

• Probability of identification using the CSHCN Screener is dramatically higher for children and youth with 5 or more medications/refills in a year period

• The CSHCN Screener discriminates use of RX Meds for acute vs. ongoing conditions– 37% with five or more medications/refills do not qualify as

CYSHCN due to a “no” response to the “duration of condition” follow up item.

Page 24: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

ConclusionsCSHCN Screener is picking up what appear to be real

practice pattern changes between 2000 and 2002

# RX Med Verified as Filled

MEPS 2000 (Adjusted Odds Ratio; Versus 0

RX Meds)

MEPS 2002 (Adjusted Odds Ratio; Versus 0

RX Meds)

1-2 Meds/Refills1.93 (1.5-2.5) 2.81 (2.3-3.4)

3-4 Meds/Refills4.48 (3.3-6.1) 7.38 (5.9-9.2)

5 or more Meds/Refills

18.0 (13.6-23.8) 32.7 (26.2-40.9)

Page 25: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

ConclusionsAssociation Between Chronic RX Meds Use and CSCHN

Identification is Strong (MEPS 2002)

# RX Med Verified as

Filled

% Qualifying As CSHCN

% Qualifying on Q1 of CSHCN

Screener0 6.3% 2.0%

1-2 filled 14.0% 9.0%

3-4 filled 27.6% 20.4%5 or more

filled 63.1% 58.4%

Page 26: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

• Several factors suggest that the increased use of RX Meds is for chronic health problems – Association between use of RX Meds and identification using

the CSHCN Screener is stronger for 2002 than for 2000

– Increases in RX Meds use between 2000 and 2002 is largely for 5 or more medications/refills

• Findings suggest that – The majority of the observed increase in CSHCN over time is

for children who have a chronic use of medications (5 or more medications/refills in a year period)

– The majority of the increase in children and youth with 5 or more medications/refills in a year period is accounted for by youth age 12-17

ConclusionsIncreased Use of RX Meds Appears to Be for Treatment of

Chronic Conditions – especially among youth age 12-17

Page 27: Comparing and interpreting findings on the prevalence and characteristics of children and youth with special health care needs (CYSHCN) in three national.

• Each survey evaluated is designed to produce national

population-based estimates. However, their use of a different sampling and administration method results in limited “apples to apples” comparison opportunities.

• Further analysis is required to determine the class of drugs and specific chronic health issues driving the increased identification on Q1/RX Meds– Based on other research, we hypothesize the increase is

significantly driven by increased use of medications for mental, emotional and behavioral problems in youth age 12-17

• Consideration of other issues and explanations as well as policy and program implications is underway.

Limitations and Next Steps


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