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)
ModuleReport from the FieldCAHMI / 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

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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 FindingsProportion of CSHCN identified

• 2 SLAITS pre-tests 16.0
• CAHMI Trials
• Population 19-21
• SSI 95
• CRG level 3 or 4 98

14
Key FindingsAgreement 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

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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

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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
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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

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Existing Child CAHPS Survey
Results
Random sample
Plan Members (0-12 years old)
CAHPS 2.0 H Survey
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CSHCN Child SurveyPopulation-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
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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

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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

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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

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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

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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 PilotSpring 2000CSHCN
ModuleExperience
38
WA State Medicaid CAHPSPast 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-CSHCNWashington State Medicaid
Managed Care Sample
p lt .01
51
CSHCN vs. Non-CSHCNWashington 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-CSHCNWashington State Medicaid
Managed Care Sample
Q27 Dr office/clinic visits during past 6 months
p lt .01
61
CSHCN vs. Non-CSHCNWashington State Medicaid
Managed Care Sample
Q26 Emergency room visits during past 6 months
p lt .01
62
CSHCN vs. Non-CSHCNWashington 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