Measuring and reporting on the presence of a medical home for all children and CSHCN Christina Bethe

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Measuring and reporting on the presence of a
medical home for all children and CSHCN
Christina Bethell, PhDDebra Read, MPHPaul
Newacheck, DrPHStephen J. Blumberg, PhDNora
Wells, MEdA project sponsored by the Maternal
and Child Health Bureau, The David and Lucile
Packard Foundation and the Centers for Disease
Control and PreventionA presentation prepared
for the Child Health Services Research Meeting,
June 2002
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Project Goal

• To develop, test, and gain consensus on a
• uniform strategy or set of strategies for
  measuring
• the presence of a medical home for all children
  
• and CSHCN

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Specific Objectives

• Existing Data Specify method for using existing
  state and national survey data to measure the
  presence of medical homes for children (MCHB)
• Family Input Interview and incorporate family
  input into the design and communication of
  measures of medical home (MCHB)
• New Methods Develop and test a comprehensive and
  parsimonious method for measuring medical home
  for use in the upcoming National Survey of
  Childrens Health and that may also serve as a
  standard for future versions of existing surveys
  (Packard)

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Medical Home AAP Definition

• 7 definitional components
• Accessible care
• Family centered care
• Continuous care
• Comprehensive care
• Coordinated care
• Compassionate care
• Culturally effective care
• 37 specific topics/concepts covered

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Medical Home AAP Definition

• Of the 37 topics/concepts
• 24 topics ? ALL CHILDREN
• 8 topics ? ALL children, but esp. CSHCN
• 2 topics ? CSHCN only (longer appts, care
  plans)
• 2 topics ? some CSHCN only(care coor. specific)
• 1 topic ? all children/MAYBE sometime
• SOME CSHCN/all the time (ADA)
  

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Medical Home AAP Definition

• What information is appropriate for self report
  on a survey
• 30 of the 37 topics are amendable, to some
  extent, to collection via self-report
• Of these 30 topics, 12 are currently addressed in
  some way by least one of the data sources under
  consideration (MEPS, CAHPS CCC, National Survey
  on CSHCN)

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Existing Data

• National Survey on CSHCN (SLAITS)
• CAHPS 2.0H (with and without the Children with
  Chronic Conditions Module)
• MEPS
• Other CAHMI tools (NSECH, PHDS, YAHCS)

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Issues in Constructing Measures Using Existing
Data

• specific content included for all children and
  age groups
• tailoring content and scoring to anticipated unit
  of analysis (system-wide, health plan, practice
  level)
• value assigned to responses to survey items (e.g.
  small problem getting referrals sometimes vs.
  usually)
• relative weighting of content within and across
  and definitional components
• threshold scores/responses required to count as
  having a medical home
• creating component scores/results as well as
  overall score/results
• creating individual level as well as aggregate
  scores/results

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Proportion of Children with a Medical Home
Variations in Estimates Based on Scoring Model
for Children With and Without Special Health Care
Needs

• Proportion of children meeting medical home
  criteria using WA CAHPS CSHCN Data

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Proportion Meeting Criteria for Having a Medical
Home According to Report of Personal Doctor
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Overall Rating of Care For Children Who Do and Do
Not Meet Grading Criteria for Having a Medical
Home

• Overall rating of care on a scale of 1-10

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Proportion Meeting Criteria By Domain
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Health Plan Level Rates Proportion of Children
With and Without Special Health Care Needs Who
Meet Threshold Criteria for Having a Medical Home

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Medical Homeness 0-100 Score Distribution of
Scores Using CAHPS CSHCN Data in One State
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Medical Homeness 0-100 Average Score vs.
Rate-Based Threshold Measure Across Nine Health
Plan Children With Special Health Care Needs
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Medical Home Focus Groups

• 6 groups conducted in NW Central OHIO
• 5 completed to-date
• 4 grps - urban / 2 grps - rural
• Sampling frame
• Families with at least 1 child enrolled in OHIO
  Medicaid and BCMH Bureau for Children with
  Medical Handicaps (Title V)

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Research Objectives for Family Focus Groups

• Hypothesis Having a Medical Home is important
  for CSHCN their families. The way we are
  currently defining operationalizing MEDICAL
  HOME captures the provider-level and system-level
  elements that are key for CSHCN and their
  families.
• Learn from families about their experiences
  regarding the specific definitional components of
  Medical Home the relative value they place on
  each
• Explore families reactions to the concept of
  Medical Home and how it relates to and/or
  reflects their experiences regarding their
  childrens care

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What did we learn?

• All families reported having at least one person
  they considered as their childs personal
  dr/nurse
• About 1/3 of families had more than one person
• PDNs were usually pediatricians, but some were
  family practice Drs
• The PCP was not always considered the doctor that
  knew child childs health condition the best
• HP rules re PCPs
• Rural distances from specialists

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What did we learn?

• The CSHCN their families interacted regularly
  with multiple systems and services
• Not only do these systems not talk to each
  other, families consistently had low expectations
  of that happening
• Parents, however, were quick to differentiate the
  medical care provided directly by physicians from
  other types of services, needs or systems

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Care Coordination

• About one-half of families got no outside help
  with care coordination, but NOT because it is
  their choice.
• The help that families did get comes from various
  sources, but these are usually not associated
  closely with childs pediatrician
• BCMH nurse was mentioned most often
• Early Intervention nurses
• Medicaid waiver or mental health services case
  managers
• In only 2 cases was the care coordinator situated
  in childs pediatrician's office both of these
  families went to same pediatrician!

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Reaction to the CONCEPT of Medical Home

• Ill take one of them!
• Everything would be at your fingertips. Seems
  organized.
• This would mean knowing that you arent the only
  one fighting the only one doing it all..
• Something like this would take the weight
  off.you could relax a little!
• I get wonderful care from the BCMH doctor, but I
  really dont have that core..somebody to tell me
  or show me what this is what I can get for them
  (has 2 yr old triplets w/ CP, etc.)
• Someone would know the whole overview. Less
  repetition to everyone in the system.
• With it, you wouldnt have to repeat yourself a
  100 times.

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Reaction to the CONCEPT of Medical Home

• A good idea but ..
• some parts might be more difficult to make
  happen such as the school part.it is what we
  need though, that kind of coordination.
• Medical home wouldnt work if the core doesnt
  care or doesnt know about available resources.
• Knowledgeable is a very subjective term because
  they (the doctors) can be very caring but not
  have all the information or expertise.
• The key would be not being treated like a
  numberthe professional(s) in the core have to
  have a reasonable case load so they are not
  spread too thin

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New Methods National Survey of Childrens Health

• Test set -- 49 items
• Five study groups
• Has one primary provider
• More than one primary provider
• Usual provider no primary provider
• No usual or primary provider usual place
• No usual or primary provider or place
• Validity item reduction analysis to arrive at
• 10-12 items
• Global Vignette
• Nested measurement model

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Issues in Arriving at a Preferred Methodology

• Balancing comprehensiveness with parsimony
• Selecting among highly correlated concepts
• Breadth vs. depth within and across definitional
  components
• Relative importance of definitional components to
  child health
• Anchoring experience of care to provider/usual
  source
• Gaps in available data
• Relevance of specific concepts to all children
• Potential for valid self report
• Negotiating differences in survey construction
  preferences

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Features of New Method

• Primary Care and Specialized Services Components
• Allows child to have more than one primary
  provider
• Small change in definition of primary provider
  from CAHPS model (eliminate knows best wording)
• Allows primary provider to be other than a
  pediatrician or family physician (e.g. a nurse,
  physician assistant, specialist, etc.)
• Anchors assessments of family centered care,
  primary care access and coordination of care to
  primary provider
• User specific scoring, grading and reporting
  templates recommended

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Illustration Global Vignette

• Im going to read a possible description of
  childrens health care. Tell me how well it
  describes (childs) health care.
• At the place where the child goes for care,
  there is at least one doctor or nurse who knows
  the child and his or her health history. They
  can be depended on to see the child when he or
  she needs to visit for a check-up or an illness.
  They ask about and listen to the parents
  concerns and involve them in decisions. They
  also help arrange other types of care when
  necessary.

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Limitations and Tradeoffs

• Balances short term with long term goals
• Seeks to inspire not discourage
• Does not include all concepts
• Does not include community service linkages in
  scoring model
• Focuses on most actionable aspects given the
  current organization and financing of health care

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Timeline for Testing the Medical Home Module in
the National Survey of Childrens Health

• Pretest -- Summer 2002
• Validity Item reduction analysis -- Fall 2002
• Full survey -- Spring 2003
• Test Medical Home Module at the practice level in
  the FACCT/CAHMI Practice Level Promoting Healthy
  Development Project -- Fall 2002