What is the Medical Home for Children with Chronic Medical Conditions? Insights for Improvement

1. What is the Medical Home for Children with Chronic Medical Conditions?Insights for Improvement Elisabeth Dellon, MD, MPH: Pediatric Pulmonology Michael Steiner, MD: General Pediatrics and Adolescent Medicine Rachael Carr, BA

2. Healthcare for Children with Special Healthcare Needs • Children and families with special healthcare needs (CSHCN) often straddle primary (PCP) and subspecialty care • Understanding and improving that interplay has the potential to simultaneously improve health outcomes and lower the cost of care

3. Healthcare for Children with Special Healthcare Needs • Primary care medical homes and subspecialty physician shortage • Right care, right time • Ideally high quality, accessible care would occur in medical homes when possible • Subspecialty care would be accessible, and used by PCPs and families only when needed

4. Study • Objective: Examine the interplay between families, PCP, and specialty care for CSHCN from multiple perspectives. • Goal: To identify variables that impact where and when families use PCP or specialist for care • Eventually be able to ‘turn-up’ or ‘turn-down’ important variables so that care is pursued where quality will be highest and cost lowest

5. Methods • 3 phase study, mixed methods study • 1st Phase • Survey and interview families of CSHCN as they return for specialty care • Explore perspectives on child’s health • Medical home qualities of both PCP and specialty care setting • Why they decide to seek care at specialist or PCP for a discrete problem

6. Methods • 2nd Phase • Survey subjects’ PCP offices about practice characteristics • Catalog a series of patient contacts with subspecialty nurses or administrators • Review PCP clinical notes for those subjects past 12 months • Review specialist clinical notes for past 12 months

7. Methods • 3rd Phase---preparing to enroll • Brief survey to large volume of children seeking specialty care to better understand how demographic variables impact specialty v. PCP decisions

8. Results: Caregiver Survey and Interview

9. Results: Caregiver Survey and Interview

10. Percent of Subjects with Varying Chronic medical conditions

11. Percent of Subjects Seeing Each Specialist Type

12. Healthcare Utilization During Past Year

13. Who Do Parents Call When Child Has An Acute Health Problem

14. Why Parents Report They Make Those Call Decisions

15. Reasons For Calls to Specialty Nurses • Total of 866 calls logged by 15 specialty nurses • 704 calls (81%) were related to the medical condition addressed by the specialist

16. Family Perception of Medical Home Characteristics of PCP Care

17. PCP Report of Medical Home Characteristics of PCP Practice • 75% response rate • 19% Medical home designation by NCQA

18. PCP Report of Medical Home Characteristics of PCP Practice

19. Family Perception of Medical Home Characteristics of Specialty Care

20. Next Steps • Analyze and compare chart extraction data from PCP and specialist clinical notes • Examine documented communication between those • Large sample to further examine sociodemographic characteristics

21. Summary • CSHCN have multiple problems & see multiple specialists • Report more specialty visits per year than PCP visits • Parents contact their specialists for care of the chronic medical problems, and PCP for typical childhood illnesses • Many parent contacts to specialists could be handled at PCP office

22. Summary • Parental decisions of who to call for questions seem most influenced by • Provider who knows child best • Access to appointments and convenient location • Trust • Families perceive less medical home characteristics at PCP than reported by those practices • Families perceive more medical home characteristics in specialty care than PCP

23. Discussion • Current care for CSHCN likely maldistributed, with too high of a proportion of care done at specialists • Changing family decision about care seeking for CSHCN could dramatically affect this • Could increase contact with PCP, lower contact with specialist which would improve specialist access • Need to increase parent sense that PCP has • Knowledge of child’s condition • Access and convenience • Trustworthy

24. Discussion • Do PCPs help create this problem by not actively managing chronic problems where specialist has seen child? • Eg “You need to call UNC for that” • Do specialists worsen this by • Too many F/U appointments instead of transferring care back to PCP • Not communicating to PCP • Giving family message that only a specialist should care for this problem

25. Questions • Questions • Elisabeth_dellon@med.unc.edu • Msteiner@med.unc.edu • Thank you to Access Care/Medicaid for funding study • Thank you to Steve Wegner and Alan Stiles for guidance and supervision of project

26. Hidden Slides

27. Medical care during past year

28. PCP practice demographics

29. Other features of primary care practices