1. 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.)

2. 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.

3. Special Thanks Marianne Ahlgren, AuD First Connections Training and Resource Project Project Coordinator David Robinson, PhD Director MSPCC Data Analyst Peter Simon, MD, MPH Asst. Medical Director, RI Dept. of Family Health Principal Investigator Betty Vohr, MD Medical Director, RI Hearing Assessment Program Contributing Editor

4. OAE

5. 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)

6. Study Objectives To 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?

7. It was hypothesized that: Primary care physicians (PCPs) would have limited knowledge in the specifics of… 1. Newborn hearing screening 2. 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.

8. 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

9. Study Sample Inclusion criteria: (1) Primary care practitioner or neonatologist in Rhode Island (2) Caring for children age 0-5 Survey sent to 207 pediatricians and family practitioners from a Health Dept. list 108 useable surveys (52%) received

10. Results The survey results were evaluated in the following categories: 1.Care coordination practices 2.Medical home beliefs 3.Psychological impact for families 4.Intervention knowledge 5.Technical knowledge 6.Preferences for receiving information 7.Recommendations to improve RI EHDI system

11. 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

12. Number of children (ages 0-5) in practice identified with HL within the past 5 years Patients with hearing lossNumberPercent None3028% 1-2 Patients4138% 3-5 Patients2624% More than 5 Patients109%

13. Care Coordination

14. Office Practices for Follow-up of RIHAP Letter Suggesting Need for Re-screen

15. 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%

16. Care Coordination Statementn Almost always or always Sometimes Rarely or Never Coordinate follow-up planning and care 9938%40%15% Ongoing communication with the audiologist 10028%31%35% Helpfulness of written reports from audiologists 9956%23%13% Primary referral source 9960%18%15% Participate in IFSP (Individual Family Service Plan) 978%10%68% Participate in IEPs (Individual Education Plan) 9110%16%66%

17. Medical Home

18. Statementn Agree or strongly agree Neither agree nor disagree Disagree or strongly disagree My practice is the Medical Home for my pt.s with HL 10558%32%9% Should coordinate services 10762%26%11% Well informed of services 10442%26%29% Well informed about paths of follow-up 10444%26%27% Parents need PCP guidance to have child’s educational needs met 10672%23%4% It is PCP’s role to help create an intervention plan 10453%26%16%

19. Medical Home Results % Agree or Strongly agree

20. Medical Home Beliefs Related to Care Coordination Agree or Strongly agree % Always or Almost Always

21. Technical Knowledge

22. Technical Knowledge Related to Screening and Diagnosis FactCorrect 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%

23. Psychological Knowledge

24. Statementn Agree or strongly agree Neither agree nor disagree Disagree or strongly disagree Parents of children diagnosed with HL experience a grief response 10791%7%2% Addressing the emotional needs of parents is integral to the care of children 10787%13%0% Parents degree of upset is proportional to degree HL 10749%19%31%

25. Intervention Knowledge

26. Statementn Agree or strongly agree Neither agree nor disagree Disagree or strongly disagree Hearing aids correct hearing to normal 10715%24%60% Cochlear implants restore hearing to normal 1029%32%53% The audiogram is the best indicator of intervention needs 10321%26%49% Sign language interferes with development of speech 1076%19%75% Intensive speech therapy should begin immediately. 10767%23%9%

27. Result Correlations

28. Of 66 PCPs who state the physician has primary responsibility for follow-up planning: The percent who actually coordinate %

29. Indices Indices were created in the areas of : Care Coordination Practices Medical Home Beliefs Technical Knowledge Psychological Knowledge Intervention Knowledge.

30. 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

31. Index Correlations Care Coord. Med. Home Tech. Know. Psych. Know. Med. Home r=.55**--- Tech. Know. n.s. -- Psych. Know. n.s. - Interv. Know. n.s.r=-.20*n.s.r=.23* * = p <.05 ** = p <.001

32. 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

33. Physician Preferences for Receiving Information

34. Preferences for Receiving Information % Likely or Very Likely

35. Physician Recommendations for Improving Rhode Island’s EHDI System

36. Recommendations to Improve RI’s Newborn Screening and Follow-up CategoryFrequency n=30 Education19 % Screening19 % Flow/Process17 % Resources14 % Communication10 % Care Coordination10 % Miscellaneous 7 % Funding5 %

37. Physician Recommendations:  One page algorithm of screening and follow-up process, listing specific tests & referral specialists (with names and phone numbers).

39. 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.

40. Recommendations Continued…  More patient specific communication from audiologists and hearing loss professionals regarding plans and options  List or directory of resources

41. Recommendations Continued…  Clear consistent model for the team approach to managing young children with hearing loss.  Center of excellence.

42. 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

43. Conclusions

44. 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.

45. 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).

46. 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.

47. Physician Recommendations:  An easy to use algorithm  More specific patient information  Better mechanisms needed for facilitating the PCP’s role as team member for families of young children with hearing loss.  Additional opportunities for education.

48. Let No Child Be Missed