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
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.
2.
3.
•
National Survey of Children with Special Health Care Needs
(2001)
Medical Expenditures Panel Survey (2000 and 2002)
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
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.”
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
Analytic Methods
1.
Qualitative comparison of the design, sampling and
administration of NS-CSHCN, NSCH and MEPS
2. Compare CSHCN Identification Rates
–
–
–
3.
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
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
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
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
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)
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
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
Results: CSHCN Identification Rates
by Child and Family Characteristics?
Category
All Children
By Age
By Sex
By Race/Ethnicity
By HH Income
NS-CSHCN vs.
MEPS and NSCH 13 MEPS 2002 vs.2003
of 15 possible
NSCH 2 of 15
differences
possible differences
Yes, NS-CSHCN
Lower
No
NS-CSHCN Lower All MEPS higher 12-17
Groups
age only
NS-CSHCN Lower All
Groups
No
NS-CSHCN Lower
White, Black,
MEPS slightly higher
Hispanic
White only
NS-CSHCN Lower All
Groups
No
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)
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)
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
Q1: RX Meds
Q2: Elevated Service
Need/Use
Q3: Functional Limitations
MEPS 2002 vs. 2003 NSCH
No (MEPS near sig. 1.2%
higher)
No
Yes, NS-CSHCN lower
Q4: Specialized Therapies
No
No (MEPS near sig. .5%
higher)
Q5: Trt/Counseling for
Emot., Behav., Develp.
Problem
No (MEPS near sig. .6%
higher)
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)
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?)
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
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 NSCSHCN 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
Result: Statistical Difference Between 2001 NSCSHCN and MEPS 2000 Nearly Eliminated
Overall Rate
Q1: RX Meds
Q2: Elevated Service
Need/Use
Q3: Functional Limitations
Q4: Specialized Therapies
Q5: Trt/Counseling for
Emot., Behav., Develp.
Problem
2001 NS-CSHCN Single
Child Households Only
MEPS 2000
14.2 (13.8-14.6)
16.2 (14.7-17.7)
11% (10.7-11.4)
11.8% (10.8-12.9)
6.3% (6.1-6.6)
6.8% (6.0-7.7)
3.4% (3.2-3.6)
4% (3.2-5.0)
2.2% (2.0-2.4)
3.2% (2.7-3.8)
3.9% (3.7-4.1)
6.2% (5.2-7.3)
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
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 (78.884.8%)
– Non-CSHCN: .1 point increase in ANY RX Meds
(not sig)
• Increase virtually entirely accounted for by
CYSHCN
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.
Conclusions
CSHCN 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.
Conclusions
CSHCN Screener is picking up what appear to be real
practice pattern changes between 2000 and 2002
MEPS 2000 (Adjusted
# RX Med Verified
Odds Ratio; Versus 0
as Filled
RX Meds)
MEPS 2002
(Adjusted Odds
Ratio; Versus 0
RX Meds)
1.93 (1.5-2.5)
2.81 (2.3-3.4)
4.48 (3.3-6.1)
7.38 (5.9-9.2)
18.0 (13.6-23.8)
32.7 (26.2-40.9)
1-2 Meds/Refills
3-4 Meds/Refills
5 or more
Meds/Refills
Conclusions
Association Between Chronic RX Meds Use and CSCHN
Identification is Strong (MEPS 2002)
% Qualifying
# RX Med
% Qualifying
on Q1 of
Verified as
As CSHCN
CSHCN
Filled
Screener
0
6.3%
2.0%
1-2 filled
14.0%
9.0%
3-4 filled
5 or more
filled
27.6%
20.4%
63.1%
58.4%
Conclusions
Increased Use of RX Meds Appears to Be for Treatment of
Chronic Conditions – especially among youth age 12-17
• 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
Limitations and Next Steps
• 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 1217
• Consideration of other issues and explanations as well
as policy and program implications is underway.