alternative models for stratifying cshcn identified through three national surveys child health...
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Alternative Models for Alternative Models for Stratifying CSHCN Identified Stratifying CSHCN Identified
through Three National through Three National SurveysSurveysDebra Read, MPH
The Child and Adolescent Health Measurement InitiativeOregon Health and Science University, School of Medicine
Co-Authors: Debra Read, MPH, Matthew Bramlett, Ph.D, Christina Bethell, PhD, Stephen Blumberg, PhD
Child Health Services Research MeetingChild Health Services Research MeetingJune 26, 2005 Boston, MAJune 26, 2005 Boston, MA
Three national surveys use the MCHB definition as Three national surveys use the MCHB definition as starting point for identification of CSHCN:starting point for identification of CSHCN:
• Nat. Survey of CSHCN Nat. Survey of CSHCN (NS_CSHCN)(NS_CSHCN)
• Nat. Survey of Children’s Health Nat. Survey of Children’s Health (NSCH)(NSCH)
• Medical Expenditure Panel Survey Medical Expenditure Panel Survey (MEPS)(MEPS)
““Children with special health care needs are those who have . . . . a Children with special health care needs are those who have . . . . a chronic physical, developmental, behavioral, or emotional condition chronic physical, developmental, behavioral, or emotional condition
and who also require health and related services of a type or amount and who also require health and related services of a type or amount beyond that required by children generally.”beyond that required by children generally.”
Maternal and Child Health Bureau, July 1998Maternal and Child Health Bureau, July 1998
CSHCN ScreenerCSHCN Screener
– Designed to operationalize Designed to operationalize MCHB definition of MCHB definition of CSHCNCSHCN
– Developed through a national processDeveloped through a national process involving state leaders, families, experts, and involving state leaders, families, experts, and policymakerspolicymakers
– Over 36,000 children / youth screenedOver 36,000 children / youth screened during during development & testing phasesdevelopment & testing phases
– Several versions tested,Several versions tested, leading to final leading to final screenerscreener
CSHCN ScreenerCSHCN Screener
Asks about 5 different health consequencesAsks about 5 different health consequences::
1)1) Limited or prevented in ability to function Limited or prevented in ability to function
2)2) Prescription medication need/use Prescription medication need/use
3)3) Specialized therapies (OT, PT, Speech) Specialized therapies (OT, PT, Speech)
4)4) Above routine use of medical care, mental health Above routine use of medical care, mental health or other health services or other health services
5)5) Counseling or treatment for on-going emotional, Counseling or treatment for on-going emotional, behavioral or developmental problembehavioral or developmental problem
______________________________________________________________________________________________________________________________________
a)a) Due to medical, behavioral or other health condition Due to medical, behavioral or other health condition
ANDAND
b)b) Condition has lasted or is expected to last for at least 12 months Condition has lasted or is expected to last for at least 12 months
Special Health Needs ContinuumSpecial Health Needs Continuum
Defining Special Defining Special Health Needs – Health Needs – WHO do we WHO do we want want
to identify?to identify?
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)
Stratifying groups identified by CSHCN Stratifying groups identified by CSHCN ScreenerScreener
Makes sense logically & clinicallyMakes sense logically & clinically::• Underlying epidemiology of childhood chronic conditions and Underlying epidemiology of childhood chronic conditions and
disabilitydisability
• Broader definition of CSHCN as starting pointBroader definition of CSHCN as starting point
• Wide variation in number and types of health services needed/used Wide variation in number and types of health services needed/used
by CSHCNby CSHCN
Options includeOptions include::• QuantitativeQuantitative – – number of qualifying screening criterianumber of qualifying screening criteria
• QualitativeQualitative – type of qualifying health consequences– type of qualifying health consequences
• Other survey informationOther survey information – alone or in combination w/ – alone or in combination w/
screening information screening information
52%
22%
15%
7%3%
8%4%
54%
21%
14%
7%4%
19%
13%
57%
0%
10%
20%
30%
40%
50%
60%
70%
80%
1 2 3 4 5Number of qualifying CSHCN screening criteria
% C
SH
CN
NS_CSHCN 2001 (CSHCN n = 48,690)
MEPS 2002 (CSHCN n = 2,096)
NSCH 2003 (CSHCN n = 18,578)
Number Qualifying CSHCN Number Qualifying CSHCN Screener CriteriaScreener Criteria
CSHCN ages 0-17 identified by CSHCN Screener across 3 National Surveys
71%
10% 11%3% 4%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
CSHCN Screener criterion
CS
HC
N w
ho
qu
alifi
ed o
n a
sin
gle
scr
een
ing
cri
teri
on
Q1
Q2 Q3 Q4 Q5
2%
6%5%
88% Qualified on Functional Limitations (Q3) in addition to 1 or
more other criteria
Statewide sample of children Statewide sample of children ages 0 -12 receiving SSI ages 0 -12 receiving SSI disability benefitsdisability benefits (n=1,493)(n=1,493)
CSHCN who qualified on a CSHCN who qualified on a singlesingle screening criterion screening criterion
NS_CSHCNNS_CSHCN (n= 24,960)(n= 24,960)
Q1:PRESCRIPTION
(RX) MEDS
Q2: ABOVEROUTINE
SERVICE USE
Q3:FUNCTIONALLIMITATIONS
Q5:MENTALHEALTH
Q4:SPECIALIZEDTHERAPIES
Rx Meds ONLY(Q1)
Service Use ONLY(Q2, Q4, or Q5)
Rx Meds ANDService Use
(Q1 and Q2, Q4, or Q5)
FunctionalLimitations
(Q3 only or w/ any otherQ Q Q Q’s
CYSHCNChildren meeting 1 or
more of the abovequalifying screening
criteria
FOUR sub groupings of CYSHCN basedon type(s) of qualifying health
consequences they experience
37%
18%
24%21%
40%
17%
22% 21%16%
20%
42%
22%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Managed by RX meds only Elevated use/need ofservices
RX meds & elevatedservice use/needs
Func. limitations + anyother
CSHCN grouped by types of health consequences based qualifying screening criteria
% C
SH
CN
NS_CSHCN 2001 (CSHCN n = 48,690)
MEPS 2002 (CSHCN n = 2,096)
NSCH 2003 (CSHCN n = 18,578)
Type of Health Consequences based on Type of Health Consequences based on Qualifying CSHCN Screener CriteriaQualifying CSHCN Screener Criteria
CSHCN ages 0-17 identified by CSHCN Screener across 3 National Surveys
Rx Meds Only: Chronic conditions primarily managed by RX meds
Conditions have little or no impact on daily activities because
well-managed by RX meds
Well-managed chronic conditions = “success story” dependent
upon continued access to health care and medication
Elevated service need/use only: Conditions/disabilities not being primarily managed by RX meds
1 in 2 require more medical, mental health, or educational
services than usual for most children
1 in 2 have on-going emotional, developmental or behavioral
issues which require treatment of some type
Rx Meds AND elevated service useRx Meds AND elevated service use:: Managed by combination of RX meds AND other health services
85% require more health and/or educational services than usual
for most children
Nearly 50% report on-going emotional, developmental or
behavioral issues which require treatment of some type
Functional limitations Functional limitations (alone or with other criteria)(alone or with other criteria):: 75% require more health and/or educational services than most
children
65% are using RX meds to manage condition(s)
Nearly 1 in 2 require OT, PT or other specialized therapies
About 45% have an on-going emotional, developmental or
behavioral issue for which they need treatment or counseling
Number of Qualifying Screener Criteria per Specific Number of Qualifying Screener Criteria per Specific Health Consequences Group -- Health Consequences Group -- NS_CSHCN 2001 (n = 48, 690)NS_CSHCN 2001 (n = 48, 690)
Func limitations + any other
100%
Qualified on 1 criteria
Managed by RX meds only
75%
21%
5%Qualified on 1 criteria
Qualified on 2 criteria
Qualified on 3 criteria
Elevated need/use of services
62%
33%
5%Qualified on 1 criteria
Qualified on 2 criteria
Qualified on 3 criteria
Qualified on 4 criteria
Rx meds AND elevated need/use of services
29%
29%
16%
18%
8%
Qualified on 1 criteria
Qualified on 2 criteria
Qualified on 3 criteria
Qualified on 4 criteria
Qualified on all 5 criteria
Func limitations + any other
Using Quantitative and Using Quantitative and Qualitative Groupings to Qualitative Groupings to Stratify CSHCN OutcomesStratify CSHCN Outcomes
– Adequacy of CSHCN current health Adequacy of CSHCN current health insuranceinsurance
– Family-Centeredness of child’s health Family-Centeredness of child’s health carecare
– Access to needed mental health care or Access to needed mental health care or counselingcounseling
26%
40%
33%
43%
30%33%
40% 41%
52%
0%
10%
20%
30%
40%
50%
60%
70%C
SH
CN
age
s 0-
17
RX
meds only
RX
meds only
Elevated service use
only
RX
meds &
elevated service use
Func limitations + any
1
2
34
5
CSHCN grouped by type of qualifying health consequences
CSHCN grouped by number of qualifying screener criteria
% of currently insured CSHCN whose insurance is NOT adequate
NS_CSHCN 2001 (n = 36,609)
23%
46%
31%
43%
30%33%
38%43%
49%
0%
10%
20%
30%
40%
50%
60%
70%C
SH
CN
ag
es 0
-17
RX
med
s on
ly
RX
med
s on
ly
Ele
vated
serv
ice use
on
ly
RX
med
s &
elev
ated
servic
e use
Fu
nc lim
itatio
ns
+ a
ny
1
2
34
5
CSHCN grouped by type of qualifying health consequences
CSHCN grouped by number of qualifying screener criteria
% of CSHCN who DO NOT consistently get Family-Centered Care
NS_CSHCN 2001 (n = 38,866)
37%41%
31%
13%
25%
49%53%
57%
6%
0%
10%
20%
30%
40%
50%
60%
70%
80%C
SH
CN
age
s 0-
17
RX
meds only
RX
meds only
Elevated
service use o
nly
RX
meds &
elevated
service use
Fun
c limitatio
ns + an
y
1
2
34
5
CSHCN grouped by type of qualifying health consequences
CSHCN grouped by number of qualifying screener criteria
% of CSHCN who needed mental health care or counseling during past 12 months (C4Q05_X06)
NS_CSHCN 2001 (n = 38,866)
28%
11%
23% 22%
16%14%
20%23%
7%
0%
10%
20%
30%
40%
50%
60%
70%C
SH
CN
age
s 0-
17
RX
meds only
RX
meds only
Elevated
service u
se only
RX
meds &
elevated
service use
Fun
c limitatio
ns + an
y
1
23
45
CSHCN grouped by type of qualifying health consequences
CSHCN grouped by number of qualifying screener criteria
% of CSHCN who DID NOT get all the mental health care/counseling that they needed during
past 12 months (C4Q05_06a) NS_CSHCN 2001
Anchor selection of stratification method to policy or Anchor selection of stratification method to policy or research question, analytic purpose and requirements:research question, analytic purpose and requirements:– Do you need an ordinal vs. categorical variable?
– Do you need variables included in all surveys in order to make across surveys comparisons?
– Keep purpose and end users in mind – How will results be used? By whom? For what purpose(s)?
– Consider the tradeoffs inherent in each method in terms of the characteristics of the groups, which CSHCN are likely to be included/excluded, and interpretation of result
– Consider other combinations of screener results such as CSHCN with emotional, developmental, or behavioral issues (Q5) vs. CSHCN who did not meet these screening criteria
Using other survey information – either on its Using other survey information – either on its own or combined with screener information to own or combined with screener information to
stratify results by complexity, severity, or stratify results by complexity, severity, or types of conditionstypes of conditions
EXAMPLES:EXAMPLES:• NS_CSHCN questions about NS_CSHCN questions about how oftenhow often and and
how muchhow much CSHCN’s conditions affect their CSHCN’s conditions affect their abilities and daily activitiesabilities and daily activities
• Condition checklists and/or parent-rated Condition checklists and/or parent-rated severity question included in NSCHseverity question included in NSCH
39%
39%
21%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
CSHCNOVERALL
Managed by RXmeds only
Elevateduse/need of
services
RX meds &elevated service
use/needs
Func. limitations+ any other
CSHCN grouped by types of health consequences based on qualifying screening criteria
% C
SH
CN
ag
es
0-1
7
Usually / Always
Sometimes
Never
C3Q02: In the last 12 mos, how often have (child’s name)’s . . . health conditions affected his/her
ability to do things other children his/her age do? (NS_CSHCN 2001; n = 38,866)
Parents evaluate and report on their children’s abilities through a “strength-based” perspective – especially
with relation to other children . . . . .
62%
27%
11%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
CSHCNOVERALL
Managed by RXmeds only
Elevateduse/need of
services
RX meds &elevated service
use/needs
Func. limitations+ any other
CSHCN grouped by types of health consequences based on qualifying screening criteria
% C
SH
CN
ag
es
0-1
7
Affects a great deal
Affects somewhat
Affects very little or not at all
C3Q03: Do (child’s name)’s . . . health conditions affect his/her ability to do things a great deal,
some, or very little/never bothers?
. . . . . take this into account when using parent-reports of children’s abilities to stratify CSHCN by severity or
complexity
(NS_CSHCN 2001; n = 38,866)
Has a doctor or other health professional Has a doctor or other health professional EVEREVER told you that [child’s name] has any of the told you that [child’s name] has any of the following conditions?following conditions?(NSCH 2003: S2Q19 – S2Q37)(NSCH 2003: S2Q19 – S2Q37)
• Hearing problems or vision problemsHearing problems or vision problems
• ADD or ADHDADD or ADHD
• AsthmaAsthma
• Depression or anxiety problemsDepression or anxiety problems
• Behavioral or conduct problemsBehavioral or conduct problems
• Bone, joint, or muscle problemsBone, joint, or muscle problems
• DiabetesDiabetes
• AutismAutism
• Any developmental delay or physical impairmentAny developmental delay or physical impairment
NSCH Condition Checklist #1NSCH Condition Checklist #1
During the During the past 12 monthspast 12 months, have you been told , have you been told by a doctor or other health professional that by a doctor or other health professional that he/she had any of the following conditions? he/she had any of the following conditions? (NSCH 2003: S2Q38 – S2Q42)(NSCH 2003: S2Q38 – S2Q42)
• Hay fever or any kind of respiratory allergy Hay fever or any kind of respiratory allergy
• Any kind of food or digestive allergyAny kind of food or digestive allergy
• Eczema or any kind of skin allergyEczema or any kind of skin allergy
• Frequent or severe headachesFrequent or severe headaches
• Stuttering, stammering, or other speech problemsStuttering, stammering, or other speech problems
NSCH Condition Checklist #2NSCH Condition Checklist #2
Children w/ YES to 1 or more
conditions on
LIST #1
Children w/ YES to 1 or more
conditions on
LIST #2
AND / ORAND / OR
S2Q47S2Q47:: You said that [ch’s name] has/had/has You said that [ch’s name] has/had/has or has had [names of conditions]. Would you or has had [names of conditions]. Would you describe his/her health condition(s) as minor, describe his/her health condition(s) as minor, moderate, or severe?moderate, or severe?**
* * Parent-rated severity question is not asked for children with health conditions not named by List #1 and/or #2 --
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Children without special healthcare needs
CSHCN
Ch
ildre
n a
ges
0-1
7
13% INCLUSION of children who do not experience current health consequences due to on-going conditions BUT whose parents report having been told at some
point in time that child had 1 or more of the conditions on List 1 and/or List 2
30%
OMISSION of children with current health consequences due to on-going conditions
BUT who DO NOT have any of the conditions named by Lists 1 and 2
Relying ONLY upon condition checklists and/or parent-rated severity
in the NSCH will lead to:
Development and testing of Development and testing of the CSHCN Screenerthe CSHCN Screener
• Bethell CD, Read D, Neff J, Blumberg SJ, Stein REK, Sharp V, Bethell CD, Read D, Neff J, Blumberg SJ, Stein REK, Sharp V, Newacheck P. Comparison of the children with special health Newacheck P. Comparison of the children with special health care needs screener to the questionnaire for identifying care needs screener to the questionnaire for identifying children with chronic conditions–revised. children with chronic conditions–revised. Ambulatory Ambulatory PediatricsPediatrics. 2002;2:49-57.. 2002;2:49-57.
• Bethell CD, Read D, Stein REK, Blumberg SJ, Wells N, Bethell CD, Read D, Stein REK, Blumberg SJ, Wells N, Newacheck PW. Identifying children with special health care Newacheck PW. Identifying children with special health care needs: development and evaluation of a short screening needs: development and evaluation of a short screening instrument. instrument. Ambulatory PediatricAmbulatory Pediatrics. 2002;2:38-47.s. 2002;2:38-47.
More informationMore information• [email protected]@ohsu.edu
• [email protected]@ohsu.edu
• www.cshcndata.orgwww.cshcndata.org