Alternative Models for Stratifying CSHCN Identified through Three National Surveys Child Health...

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



Elevated need/use of services

62%

33%

5%Qualified on 1 criteria




Rx meds AND elevated need/use of services

29%

29%

16%

18%

8%





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



% 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



% 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



% 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

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