The Medical Home and EHDI Systems; Physician
Perspectives February , 2004
Carol Dorros, MD-Parent Consultant
First Connections Training and Resource Project for Newborn Hearing Screening
A RI Department of Education and RI Department of Health Collaboration. Supported in Act), Health Resource and Services Administration, Department of Health and Human Services part by project 1 H61 MC 00009 from the Maternal and Child Health program (Title V, Social Security Project funds managed by The Hearing Rehabilitation Foundation.)
Dedication
This talk is dedicated to the memory of Ellen Kurtzer-White, AuD, whose life was committed to serving families of young children with hearing loss. She conceived of and directed The First Connections Training and Resource Project, designed to strengthen the RI EHDI system with the goal of improving the experience and outcomes for these families.
Special Thanks• Marianne Ahlgren, AuD
First Connections Training and Resource Project Project Coordinator• David Robinson, PhD
Director MSPCCData Analyst
• Peter Simon, MD, MPHAsst. Medical Director, RI Dept. of Family Health
Principal Investigator• Betty Vohr, MD
Medical Director, RI Hearing Assessment ProgramContributing Editor
Background
• AAP recommends a Medical Home for all children with special health care needs. (AAP position statement RE9902, 1999)
A medical home is defined as an approach to providing health care services where care is:
-accessible - coordinated- family-centered - compassionate-continuous -culturally competent- comprehensive
• Joint Commission on Infant Hearing recommends a Medical Home for all children with hearing loss.(AAP position statement, SO 60016, 2002)
Study ObjectivesTo survey Primary Care Physicians (PCPs)
involved with RI EHDI system in order to learn:
What are the office practices, specialty service provider interactions, knowledge of the newborn screening and follow-up process, and beliefs around the psychological impact for families?
Do these physicians view themselves as the Medical Home or care coordinators for infants and young children with hearing loss?
It was hypothesized that:• Primary care physicians (PCPs) would have
limited knowledge in the specifics of…1. Newborn hearing screening2. Diagnosis, and intervention 3. Psychological impact for families of children with hearing loss.
• That PCPs’ knowledge deficits would negatively impact their coordination and Medical Home practices.
Methods
3 page survey with:
39 questions relating to…
-PCP Medical Home practices and beliefs
-Knowledge about and recommendations to improve the RI EHDI system
-Preferences for receiving information
Study SampleInclusion criteria:
(1) Primary care practitioner or
neonatologist in Rhode Island
(2) Caring for children age 0-5Survey sent to 207 pediatricians and family
practitioners from a Health Dept. list108 useable surveys (52%) received
ResultsThe survey results were evaluated in the
following categories:1. Care coordination practices2. Medical home beliefs3. Psychological impact for families4. Intervention knowledge5. Technical knowledge6. Preferences for receiving information7. Recommendations to improve RI EHDI
system
Demographics Practice Type: 90% Primary care alone 5% Primary care with a subspecialty 5% Subspecialty alone (neonatology)
Practice Setting: 78% Private office 14% University or hospital based
9% Community health center
Years in practice: <1 year - 54 years Even distribution of years (0-5), (6-13), (14-20) and (>20)
47% female
Number of children (ages 0-5) in practice identified with HL within the past 5 years
Patients with hearing loss Number Percent
None 30 28%
1-2 Patients 41 38%
3-5 Patients 26 24%
More than 5 Patients 10 9%
Office Practices for Follow-up of RIHAP Letter Suggesting Need for Re-screen
4742
29
148
5
05
101520253035404550
% respondents
Care Coordination Results Which professional has primary responsibility for follow
up planning (testing, parent support, referrals, intervention) for patients birth through 5 years who have hearing loss?
Primary care physician 63%
Audiologist 13%
Otolaryngologist 6%
Early intervention 4%
Team (PCP, audiologist, EI…) 9%
Other 5%
Care Coordination
Statement n
Almost always or
always SometimesRarely or
Never
Coordinate follow-up planning and care 99 38% 40% 15%
Ongoing communication
with the audiologist 100 28% 31% 35%
Helpfulness of written reports from audiologists 99 56% 23% 13%
Primary referral source 99 60% 18% 15%
Participate in IFSP(Individual Family Service Plan)
97 8% 10% 68%
Participate in IEPs(Individual Education Plan)
91 10% 16% 66%
Medical Home
Statement n
Agree or strongly
agree
Neither agree nor disagree
Disagree or
strongly disagree
My practice is the Medical Home for my pt.s with HL 105 58% 32% 9%
Should coordinate services 107 62% 26% 11%
Well informed of services 104 42% 26% 29%
Well informed about paths of follow-up 104 44% 26% 27%
Parents need PCP guidance to have child’s educational needs met
106 72% 23% 4%
It is PCP’s role to help create an intervention plan 104 53% 26% 16%
Medical Home Results
43 44
58
0
10
20
30
40
50
60
70
Practice is theMedical Home
Well Informed ofServices
Well Informed ofPaths of Follow-up
% Agree or Strongly agree
Medical Home Beliefs Related to Care Coordination
54
8 10
71
0
1020
30
40
5060
70
80
PCP Guidancefor Education
PCP CreateIntervention
Plan
Participate IFSP Participate IEP
Agree or Strongly agree
%
Always or Almost Always
Technical Knowledge Related to Screening and Diagnosis
Fact Correct Response
Incidence of hearing loss in children
30%
Initial fail rate for RI newborn hearing screening
20%
Otoacoustic emissions (OAE) tests cochlear function
28%
Automated auditory brainstem response (AABR) tests neural integrity
70%
Visual reinforcement audiometry (VRA) can be used as early as 6 months of age
35%
Psychological Knowledge
Statement n
Agree or strongly
agree
Neither agree nor disagree
Disagree or
strongly disagree
Parents of children diagnosed with HL experience a grief response
107 91% 7% 2%
Addressing the emotional needs of parents is integral to the care of children
107 87% 13% 0%
Parents degree of upset is proportional to degree HL 107 49% 19% 31%
Intervention Knowledge
Statement n
Agree or strongly
agree
Neither agree nor disagree
Disagree or
strongly disagree
Hearing aids correct hearing to normal 107 15% 24% 60%
Cochlear implants restore hearing to normal 102 9% 32% 53%
The audiogram is the best indicator of intervention needs
103 21% 26% 49%
Sign language interferes with development of speech
107 6% 19% 75%
Intensive speech therapy should begin immediately. 107 67% 23% 9%
Of 66 PCPs who state the physician has primary responsibility for follow-up planning:
The percent who actually coordinate
50
38
11
0
10
20
30
40
50
60
Most of time or always Sometimes Rarely or never
%
Indices
Indices were created in the areas of :
• Care Coordination Practices
• Medical Home Beliefs
• Technical Knowledge
• Psychological Knowledge• Intervention Knowledge.
Care coordination practices and Medical Home beliefs are related to:
Practice CCI
( r )MHI
( r)Communication with the audiologist .63** .40**
Helpfulness of written reports from the
audiologist.35** .26*
Participation in the IEP .78** .43**
Participation in the IFSP .64** .26**CCI=Care Coordination Index , MHI=Medical Home Index
*=p<.01, **=p<.001
Index Correlations
Care Coord.
Med. Home
Tech. Know.
Psych.
Know.
Med. Home
r=.55** - - -
Tech. Know.
n.s. n.s. - -
Psych. Know.
n.s. n.s. n.s. -
Interv. Know.
n.s. r=-.20* n.s. r=.23*
* = p < .05 ** = p < .001
Index Summary
• Care coordination practice is positively related to medical home belief
• Intervention knowledge is positively related to psychological knowledge
• Medical home belief is negatively related to intervention knowledge
Findings from Indices
Preferences for Receiving Information
85
75 73
59 57
0
10
20
30
40
50
60
70
80
90
ResourceGuide
Grand Rounds Journalarticles
Meeting aboutRI resources
Web
% Likely or Very Likely
Recommendations to Improve RI’s Newborn Screening and Follow-up
Category Frequency n=30
Education 19 %
Screening 19 %
Flow/Process 17 %
Resources 14 %
Communication 10 %
Care Coordination 10 %
Miscellaneous 7 %
Funding 5 %
Physician Recommendations:
One page algorithm of screening and follow-up process, listing specific tests & referral specialists (with names and phone numbers).
Physician Recommendations:
Results of screening, pass and fail, in newborn chart.
Letter indicating failed screen should be followed by call to office to inform PCP what the program is doing to further coordinate diagnosis and treatment.
Recommendations Continued…
More patient specific communication from audiologists and hearing loss professionals regarding plans and options
List or directory of resources
Recommendations Continued…
Clear consistent model for the team approach to managing young children with hearing loss.
Center of excellence.
Recommendations Continued…
Education (starting at the residency level) addressing…
-emotional stress for parents
-screening process and follow-up interventions
-cultural issues related to hearing loss
Data Supporting the Involvement of Medical Home:
The majority of surveyed physicians think that the primary care provider has primary responsibility for follow-up planning.
Over half of surveyed physicians believe their practice is the Medical Home for their pediatric patients with hearing loss.
Specific Practices that support care coordination and Medical Home:
Improved communication and coordination with the Audiologist.
Active participation in interventional and educational planning (IFSPs and IEPs).
Factors Contributing to Experiences of Fragmentation for Families
Results identify specific knowledge gaps related to screening, psychological impact and follow-up interventions.
Many physicians do not feel well informed of the services or pathways.
There is a disconnect between what physicians feel they should be doing and what they actually do in relation to care coordination.
Physician Recommendations:
An easy to use algorithmMore specific patient informationBetter mechanisms needed for facilitating
the PCP’s role as team member for families of young children with hearing loss.
Additional opportunities for education.
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