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Children with Special Health Care Needs CSHCN Module Report from the Field CAHMI WA State Medicaid P

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Title: Children with Special Health Care Needs CSHCN Module Report from the Field CAHMI WA State Medicaid P


1
Children with Special Health Care Needs (CSHCN)
Module Report from the Field CAHMI / WA State
Medicaid Pilot Spring 2000
2
Who are Children with Special Health Care
Needs?
  • Children with special health care needs . . . 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.
  • ? Maternal and Child Health Bureau, July 1998

3
Motivation
  • Quality for CSHCN is often inadequate (about
    40-60 of optimal on clinical indicators, 50-80
    on experience of care)
  • Increasing mandates to focus on quality of care
    for CSHCN clients in Medicaid and S-CHIP
  • Need for a common, standardized approach to
    identify and assess quality for CSHCN in health
    plans and other settings.

4
Motivation
  • Health care needs of CSHCN differ in type, scope,
    frequency, duration complexity
  • Majority of child health care dollars (80-90)
    spent for CSHCN
  • Assessment of care for CSHCN provides more
    sensitive indicators of quality

5
The CSHCN Module
  • Five Components
  • 1. A core patient experience of care survey, the
    CAHPS 2.0 Child Survey
  • 2. The CSHCN screener, a 5-item tool to identify
    children w/ chronic or special health care needs
  • 3. The CSHCN question supplement addressing
    topics especially relevant to CSHCN their
    families
  • 4. A dx-code based administrative data algorithm
    for use in an enriched sampling strategy
    (optional)
  • 5. Guidelines for scoring presenting the
    CSHCN-specific measures collected by CSHCN Module

6
Development Background
  • Began March, 1998.
  • 6 in-person national meetings of CAHMI Living
    with Illness Task Force involving consumers,
    providers, researchers, policymakers, etc.
  • 25 to 30 Living with Illness Task Force Advisory
    Group conference calls over course of work
  • Innumerable e-mails real time review sessions
    among Task Force members advisors
  • Field trials collecting over 26,000 cases of
    survey data

7
Players
  • CAHPS Team
  • NCQA
  • Family/consumer organizations -- Family Voices
  • Provider groups -- AAP, NACHRI, AAFP
  • Federal agencies - HCFA, HRSA, MCHB, AHRQ
  • State agencies -- numerous Medicaid/S-CHIP
    representatives
  • Academic experts -- Newacheck, Stein, Perrin
  • CAHMI/FACCT staff coordinated advisory team,
    developed measurement specifications and
    conducted field testing

8
Major Challenges
  • The epidemiology of children w/ chronic
    conditions makes condition by condition
    assessments impractical for performance
    comparison
  • Single condition monitoring provides inadequate
    view of overall quality of care
  • Condition checklists and/or administrative dx
    data have limited utility for prevalence or
    performance measurement (although can be useful
    components)
  • Sample size capacity to preserve CAHPS trending
    data important feasibility considerations

9
CSHCN Module
  • 5 item CSHCN Screener using non-categorical
    criteria to identify CSHCN
  • CSHCN Question Supplement (31 items) assessing
    concepts of care essential for CSHCN regardless
    of clinical nature or severity
  • Enriched sampling strategy minimizing sample size
    necessary to achieve statistically adequate
    cohort of CSHCN for performance comparison
  • Sampling design preserving standard CAHPS sample
    while also making it possible to stratify results
    for CSHCN and non-CSHCN groups

10
Testing
  • PHASE I 18 Focus grps w/ parents (8
    CSHCN-specific)
  • Cognitive interviews w/ instruments
  • PHASE II Field trials in 4 health plans (mail
    phone)
  • 2 commercial 1 Medicaid HMOs
  • 1 mixed model MCO 1,995 surveys collected
  • PHASE III Validation of CSHCN screening tool
    (phone only)
  • 1 mixed model MCO 2 national samples
  • 12,471 cases collected
  • PHASE IV WA State Medicaid Pilot Study (mail
    phone)
  • 9 Medicaid HMOs 1 FFS/SSI sample
  • 12,143 surveys collected

11
CSHCN Screening Tool
  • For broad-based, standardized use in quality
    assessment we needed
  • Short tool
  • Tool that would minimize false positives while
    still identifying the broad range of children
    having chronic or special health needs
  • Tool that could be used by mail or telephone
  • Tool reflecting a consensus definition of CSHCN

12
CSHCN Screening Tool
  • Five current consequences triggers
  • Limited or prevented in ability to function
  • Prescription medication need/use
  • Specialized therapies (OT, PT, Speech)
  • Medical care, mental health or educational
    services need/use above what is routine for age
  • Counseling or treatment for on-going emotional,
    behavioral or developmental problem
  • __________________________________________________
    _________________
  • 1) Due to medical, behavioral or other health
    condition
  • AND
  • 2) Condition has lasted or is expected to last
    for at least 12 months

13
Key Findings Proportion of CSHCN identified
  • 2 SLAITS pre-tests 16.0
  • CAHMI Trials
  • Population 19-21
  • SSI 95
  • CRG level 3 or 4 98

14
Key Findings Agreement with Other Methods
  • Agreement with QuICCC-R
  • Agree 9 out of 10 times
  • PPV Screener - 93
  • NPV Screener - 89
  • Discrepant group different in specific number and
    content of items qualifying on on the QuICCC-R
    and in probability that parents name a condition
    or child has a chronic diagnostic code or
    indication of condition in medical records
  • Agreement with 3M?CRG classification
  • Agree 9 out of ten times
  • PPV Screener - 67
  • NPV Screener - 93

15
Key Findings
WA State Medicaid Pilot Study, CAHMI 2000
16
Key Findings
WA State Medicaid Pilot Study, CAHMI 2000
17
What do we ask about these CSHCN ? (CSHCN
Question Supplement)
18
Existing Experience of Care Measures
  • 5 CAHPS Composites
  • Getting needed care
  • Getting care without long waits
  • Doctors who communicate
  • Helpful and courteous staff
  • Customer service

19
CSHCN Question Supplement
  • Comprised of 31 items (includes filter
    questions), the CSHCN Question Supplement
  • Adds 4 new domains for assessment
  • Getting Prescription Medicines
  • Getting Specialized Services
  • Family-Centered Care
  • Personal dr/nurse who knows child
  • Getting needed information about childs health
  • Shared decision making
  • Coordination of Care Services

20
CSHCN Question Supplement
  • Discriminating across plans
  • Significant variation in quality among health
    plans exists for CSHCN F value ranges (9
    sites)
  • Standard CAHPS composites 12.6 ? 4.4 (ps
    lt .000)
  • CSHCN measures 7.3 ? 3.6 (ps lt .001)
  • Opportunity for improvement
  • Care for CSHCN often lower, but not uniformly so
  • In a few plans, CSHCN grp outscored Non-CSHCN grp
    on some measures
  • Taken together, demographic health status
    variables explain less than 4 of variation in
    individual scores

21
Key Findings
  • Differences exist in quality for CSHCN and
    non-CSHCN groups in same health plan
  • CSHCN vs. Non-CSHCN Results
  • Domain Within plan differences
  • CAHPS How well drs. communicate 2 out of 9 plans
  • CAHPS Getting care quickly 1 out of 9 plans
  • CAHPS Getting needed care 9 out of 9 plans
  • CAHPS Courteous/helpful staff 1 out of 9 plans
  • CAHPS Customer services 5 out of 9 plans

WA State Medicaid Pilot Study, CAHMI 2000
p gt .01
22
Enriched sampling strategy enhances feasibility
23
Enriched Sampling Strategy
  • Relatively low prevalence of CSHCN in general
    population raises sample size issues for
    survey-based identification methods
  • For many applications, it may be desirable to
    minimize the starting sample size needed to
    achieve a targeted number of CSHCN by increasing
    number of children likely to be CSHCN
  • The CSHCN Module includes a pre-specified dx-code
    list for use with administrative records to
    prescreen for a cohort of children having a
    higher probability than average of meeting the
    survey-based screening tool

24
Existing Child CAHPS Survey
Results
Random sample
Plan Members (0-12 years old)
CAHPS 2.0 H Survey
25
CSHCN Child Survey Population-Based Approach
Overall Results
Random sample
Plan Members (0-12 years old)
CAHPS 2.0 H Survey
CSHCN Screener
CSHCN Results
26
Enriched Sampling Strategy Approach
Overall Results
Random sample 1
Plan Members (0-12 years old)
CAHPS 2.0 Survey w/ CSHCN screener questions
CSHCN Results
Random sample 2
Administrative data idd as probable CSHCN
27
Enriched Sampling Strategy
  • Consistent CSHCN catch across plans
  • Overall, 52 of the children in the dx code
    prescreen group met the survey-based CSHCN
    screening tool (range across 9 plans 51 to
    58)
  • Similar screener results across plans
    OVERALL CATCH ()
  • Q1 Rx meds 27.3 ? 30.8
  • Q2 Service use 19.4 ? 22.6
  • Q3 Func. limits 11.7 ? 13.6
  • Q4 Therapies 5.0 ? 7.5
  • Q5 Mental hlth 15.5 ? 18.2

28
Enriched Sampling Strategy
  • 8-11 of survey eligible children across the 9
    plans met prescreen criteria (1 or more dx codes
    from list)
  • Most common diagnoses among the group meeting
    prescreen criteria
  • MCO SSI
  • ASTHMA 31 15
  • ADHD/ADD 12 13
  • CONGENITAL ANOMALIES 11 15
  • HEARING LOSS 10 9
  • MENTAL HEALTH (Depression, 9.8 14
  • neuroses, eating disorders, substance abuse)
  • DEVELOPMENTAL DELAY 8 17

29
Scoring Presentation
  • The CSHCN Module yields 2 sets of consumer
    reporting measures
  • For regular CAHPS random population sample
  • 5 CAHPS composites
  • 3 CAHPS rating scales
  • For CSHCN group ONLY
  • 5 CAHPS composites
  • 3 CAHPS rating scales
  • 4 CSHCN-specific composites

30
Scoring Presentation
  • Options and Issues
  • Mutually exclusive vs. non-mutually exclusive
    groups for scoring/presentation
  • Scoring of the benefit structure related items
    (RX medicines and specialized services
  • Absolute vs. relative scoring
  • Incorporating prescreen group cases that not meet
    CSHCN screener

31
Other Issues
  • Mode of administration
  • In WA State Pilot study, CSHCN rates did NOT vary
    significantly by mode (mail or phone)
  • Multi child responders effect on CSHCN
    estimates
  • In WA State Pilot Study, about 12 may have
    responded to survey for more than 1 child
  • Adolescent self-report vs. parent reporting
  • Other applications of the CSHCN screener
  • Cultural competency

32
Spanish vs. English
  • In WA State Medicaid Pilot Study
  • 10 of surveys were collected in Spanish
  • More of the Spanish than English language surveys
    were collected by telephone (English 19 Spanish
    36)
  • 46 of respondents answering Yes, my child is
    Hispanic responded to survey in Spanish
  • Nearly 100 of those who responded in Spanish
    described their child as being Hispanic

33
Spanish vs. English
  • In the WA State Pilot Study, children described
    as Hispanic tended to be idd as CSHCN at a
    lower rate than non-Hispanics
  • Hispanic child, survey collected in English
  • 18 met CSHCN screener (vs. 21 non-Hispanic)
  • SLAITS pretest found similar difference (14
    CSHCN Hispanic vs. 16 CSHCN non-Hispanic)
  • Hispanic child, survey collected in Spanish
  • 10 met CSHCN screener

34
Spanish vs. English
  • Age distribution in Spanish language group may
    explain some of the CSHCN rate difference
  • Mean age 6 yrs / Spanish grp vs. 8 yrs /
    English grp
  • Reading level of screener does not appear to be
    implicated
  • Mode of administration did NOT significantly
    effect CSHCN screening rates in Spanish
  • A mix of cultural translation factors may be
    involved
  • A child described as being Hispanic was more
    likely to meet CSHCN criteria if the survey was
    collected in English
  • Hispanic children also appeared to be
    underrepresented in SSI sample

35
Spanish vs. English
  • Despite lower CSHCN rates for group responding in
    Spanish
  • 20 of parents in Spanish grp rated their
    childs health now as fair compared to 6 in
    English grp
  • Spanish grp reported twice the rate of NO
    dr/clinic visits during past 6 mos. (35 /
    Spanish vs. 18 / English)
  • Level of ER utilization, however, was the same
    for children in both the Spanish English
    language groups

36
Status of CSHCN Module
  • Version of the CSHCN Module (HEDIS/CAHPS 2.5H
    Child Survey) accepted for inclusion in HEDIS
    2002. Public review in process.
  • Technical documentation for national CAHPS users
    group currently underway
  • 3.0 version of CSHCN Module in final stages of
    testing and confirmation
  • CSHCN screening tool being used nationally in
    MEPS SLAITS and various State settings

37
Washington State Pilot Spring 2000 CSHCN
Module Experience
38
WA State Medicaid CAHPS Past Present
  • Conducted CAHPS surveys since 1997
  • 1997-2000
  • Children and Adults - Managed Care
  • Children and Adults - Fee-for-Service
  • 2000
  • Added CSHCN Module to CAHPS Child Survey
  • surveyed children in Managed Care SSI
    Fee-for-Service

39
Study Population
  • All child Medicaid clients statewide meeting
    standard CAHPS child survey eligibility criteria
  • 0 - 12 years old
  • Currently enrolled in a health plan for at least
    6 months (one gap gt 30 days allowed)
  • English or Spanish household language
  • One statewide SSI sample, 0 - 12 yrs old
  • Fee-for-service group
  • n 2550 nearly all SSI / 0-12yrs statewide

40
Study Population
  • Administrative records for all CAHPS eligible
    children examined w/ prescreen algorithm
  • Child placed in one of 3 categories
  • No encounter data found
  • Encounter records DO NOT meet prescreen criteria
  • Encounter records DO meet prescreen criteria
  • Stratified random samples drawn in each of the
    nine participating health plans

41
Enriched Sample
  • SAMPLE A Random sample of eligible pop.
  • Std. CAHPS sample of 1,050 Medicaid child members
    per plan
  • SAMPLE B Prescreened sample
  • Remaining children subset to those meeting
    prescreening criteria
  • Second random sample of up to 1,500 per plan
    selected from this group
  • 5 of 9 plans had sufficient population to meet
    goal
  • Targeted sample for remaining plans 750
  • In some cases, supplemented with grp not meet
    prescreening criteria.

42
Survey Methods
  • In April 2000, surveys mailed to 19,756 families
    of child Medicaid clients
  • CAHPS 2.0H Child Survey (Medicaid)
  • CSHCN Screener (5 items)
  • CSHCN Question Supplement (31 items)
  • 2 waves of surveys mailed, phone admin. follow
    up with non-mail responders
  • All respondents answered all CAHPS and CSHCN
    components

43
Results
  • Across 9 MCO sites 10, 560 surveys
    collected

SAMPLE A Regular CAHPS sample 47.1 n 4972
SAMPLE B Prescreened sample 52.9 n 5588
  • SSI sample 1583 surveys collected

44
Grand Total
  • 12,143 usable surveys
  • 90 collected in English
  • 10 collected in Spanish
  • 57.7 response rate overall / MCOs
  • English Spanish RRs nearly equal
  • SSI response rate 62.8
  • 79 mail 21 telephone

45
  • How did the data from the CSHCN Module
    complement and augment existing CAHPS data
    collection activities?

46
Using CSHCN Module allowed
  • 1) State-wide health plan level estimates of
    CSHCN in Medicaid managed care
  • 2) Care quality to be examined compared for
    CSHCN non-CSHCN grps
  • 3) Utilization and specialized services
    comparison for CSHCN non-CSHCN grps
  • 4) More in-depth look at care experience
    service need/use by SSI group
  • 5) Public reporting of health plan quality data
    for CSHCN and SSI groups

47
1) State-wide health plan level estimates of
CSHCN in Medicaid managed care
Using the CSHCN Module Data
48
CSHCN Screener Results
  • Medicaid managed care samples (English ONLY)

SAMPLE A Regular CAHPS sample 20.7 met CSHCN
screener
SAMPLE B Prescreened sample 53 met CSHCN
screener
Full prescreen sample sites ONLY ( n 5)
  • SSI Fee-for-service sample (all English)

94.3 met CSHCN screener
49
CSHCN Screener Results
  • WA State Medicaid Pilot
  • In random child population sample
  • 20.7 CSHCN overall, (9 plans)
  • Range 17 ? 25 CSHCN
  • In random child population sample, qualifying
    on
  • OVERALL RANGE
  • Q1 Rx meds 14.4 11.6 ? 16.5
  • Q2 Service use 9.7 6.8 ? 13.4
  • Q3 Func. limits 6.4 4.4 ? 8.4
  • Q4 Therapies 3.4 2.5 ? 4.6
  • Q5 Mental hlth 9.7 6.3 ? 12.7

50
CSHCN vs. Non-CSHCN Washington State Medicaid
Managed Care Sample
p lt .01
51
CSHCN vs. Non-CSHCN Washington State Medicaid
Managed Care Sample
p lt .01
52
2) Care quality examined compared for CSHCN
non-CSHCN grps
Using the CSHCN Module Data
53
Experience of Care Measures
  • Measures derived from CAHPS/CSHCN survey data
  • 5 CAHPS composites
  • Getting Needed Care
  • Getting Care Without Long Waits
  • Doctors Who Communicate
  • Helpful and Courteous Office Staff
  • Customer Services
  • 4 CSHCN composites
  • Access To Prescription Medicines
  • Access To Specialized Services
  • Family -Centered Care
  • Coordination Of Care

54
CSHCN vs. Non-CSHCN
CAHPS Composites
55
CAHPS Composites
  • CSHCN group had significantly lower scores on
    every question for
  • Getting Needed Care composite
  • Q7 Finding PCP happy with
  • Q14 Referrals to specialists
  • Q28 Getting care parent/doctor believed
    necessary
  • Q29 Care delayed due to health plan approvals
  • Customer Service composite
  • Q66 Finding or understanding health plan
    materials
  • Q68 Getting help over phone from customer
    service
  • Q69 Getting help from customer service w/o long
    wait

56
CAHPS Composites
  • CSHCN group had significantly lower scores on
    starred ? questions for
  • How Well Drs. Communicate composite
  • Q34 Dr listens to parent ?
  • Q36 Dr explains things so parent understands ?
  • Q38 Dr respectful of what parents say ?
  • Q40 Dr explains things so child understands
  • Q41 Dr spends enough time with child
  • Getting Care Quickly composite
  • Q19 Getting phone help or advice from Drs
    office/clinic ?
  • Q21 Getting appts as soon as wanted
  • Q24 Getting urgent care as soon as wanted
  • Q30 Waiting more than 15 mins in Drs
    office/clinic

57
CSHCN vs. Non-CSHCN
CSHCN Composites
58
CSHCN Family Centered Care Composites
  • CSHCN group had
  • Significantly HIGHER scores on
  • Q10 PCP understands how health conditions affect
    childs day-tp-day life
  • Q11 PCP asks how child is feeling, growing,
    behaving
  • Significantly LOWER scores on
  • Q37 Support from all childs providers re
    parents care of child
  • Q46 Receiving enough information about childs
    medical or other health conditions

59
3) Utilization and specialized services
comparison for CSHCN non-CSHCN grps
Using the CSHCN Module Data
60
CSHCN vs. Non-CSHCN Washington State Medicaid
Managed Care Sample
Q27 Dr office/clinic visits during past 6 months
p lt .01
61
CSHCN vs. Non-CSHCN Washington State Medicaid
Managed Care Sample
Q26 Emergency room visits during past 6 months
p lt .01
62
CSHCN vs. Non-CSHCN Washington State Medicaid
Managed Care Sample
p lt .01
63
4) More in-depth look at care experience
service need/use by SSI group
Using the CSHCN Module Data
64
Medicaid CSHCN vs. SSI / FFS
65
Medicaid CSHCN vs. SSI / FFS
66
Using the CSHCN Module Data
  • 5) Public reporting of health plan quality data
    for CSHCN and SSI groups
  • CSHCN quality results included in Medicaid client
    brochures distributed statewide during Fall 2000
    enrollment period
  • 300 copies stakeholderreports w/ CSHCN SSI
    quality results
  • State level report on CSHCN in Medicaid managed
    care
  • Individualized health plan reports comparing
    CSHCN non-CSHCN groups

67
CAHPS CSHCN Module
  • CSHCNs comparison population to children on SSI
    (fee-for-service population) previously surveyed
  • Screener allowed us to identify CSHCNs
    proportion by health plan (complements encounter
    data studies used to set rates)
  • New measures required by HCFA coordination of
    care, access to equipment, specialty care
  • Provides new possibilities/capabilities for
    measuring Medical Home

68
Lessons Learned Client Education
  • CAHPS reports of quality measures
  • Have not reached consensus on relative vs.
    absolute ratings for client reports
  • CAHPS standard (including case-mix adjustment
    combining like response categories) important
  • Parents of CSHCN expressed that seeing quality
    measures provides useful tool to evaluate
    individual providers

69
Quality Improvement Opportunities
  • CSCHN care coordination issue for health plans
    and MAA communication issue (providers ask how
    your child is feeling,growing, behaving)

70
Future Plans
  • HCFA regulations (BBA and Children with Special
    Health Care Needs) emphasis on QAPI
  • Snohomish County environment shifting, need to
    focus on care improvement with providers
  • EPSDT shift to providing feedback to providers
  • 2002 Procurement may include reward for quality
  • 2001 surveys Title V children, PCCM enrollees,
    and CHIP

71
(Closing comments section)
72
Looking Ahead 2001-2004
  • Vision
  • Inform consumers and purchasers about quality
  • Activate consumers as partners in care and
    improving quality
  • Improve quality of child and adolescent health
    and health care quality
  • Three Overarching Goals
  • Keep the focus nationally and in states
  • Build supply of quality information
  • Build demand for quality information

73
Support Available
  • Targeted consulting from FACCT
  • Full measures specifications developed for
    website use
  • CAHMI Website
  • Provides detailed review of CAHMI principles,
    framework, measures, technical specifications --
    all key documents and tools available for
    download
  • Ideal platform for public-private clearinghouse
    of CAHMI and non-CAHMI measures and issues
    regarding child and adolescent quality
    measurement, reporting and accountability

74
More information
  • www.facct.org/cahmi.html
  • www.ncqa.org -- public review documents
  • childs_at_facct.org
  • Users Forms available to be filled out
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