1. CHILDREN WITH SPECIAL HEALTH CARE NEEDS LOCAL AND ITINERANT CLINIC PROVIDER SURVEYS Laila Andoni, Mackenzie Boon, Jason Fox, and Nicole Graham Project Mentors: Dr. Allison Ellzey, Dr. Sarah Winter, Gina Pola-Money

2. Challenges of CSHCN in Rural Areas ●Unmet health care needs due to transportation difficulties or lack of available care in the area. ●More likely to have financial difficulties. ●Parents express feelings of being overwhelmed, unprepared, isolated, and stigmatized. ●Less likely to be seen by a pediatrician. ●Physician-reported barriers include lack of time and limited knowledge of conditions affecting CSHCN.

3. CSHCN Itinerant Clinics 2012 URLEND survey of 50 families ●44% identify the clinics as primary source of medical care. ●Itinerant staff report that patients frequently call traveling clinic providers for medication management between clinics. ●Families desired clinics to be available more often and/or wanted to receive better follow-up care locally after a clinic Blanding Moab Price Richfield St. George Vernal Ogden

4. Participants Itinerant Providers Surveyed all Providers traveling to itinerant clinics throughout Utah to provide services Services include: Developmental Pediatrics Nursing Social Work Psychology Speech-Language Pathology Audiology PT/OT Neurology Genetics

5. Participants Cont’d… Local PCP Identification: UPIQ (Utah Pediatric Partnership to Improve Health Care Quality) database DOPL (Utah Division of Occupational and Professional Licensing) provider lists DOPL lists were reviewed and limited to pediatrics and family medicine Local PCPs Consisted of two groups: Rural PCPs – Local PCPs in the following locations: Blanding/Montezuma Creek Moab Richfield St. George Vernal Ogden PCPs – Local PCPs in Ogden

6. Measures Developed 2 surveys: 1 survey to send to itinerant providers 1 survey to send to local PCP’s Purposes of the survey: Better understand the strengths and weaknesses of the itinerant clinics to help improve services Better understand strengths and weaknesses of communities in caring for CSHCN

7. Survey Topics for Both Surveys Demographics Strengths and weaknesses of the community’s health care system and current itinerant clinic system Continuity of Care Ongoing healthcare management Challenges that affect care management for CSHCN Telemedicine

8. Local PCP Survey Questions # of patient referrals to the itinerant clinics Reason for not referring (if applicable) Services available for CSHCN within a specified distance Barriers to mental health services for CSHCN in rural communities Preferred method of communication regarding care of patients that attend itinerant clinics

9. Procedures ●Survey for local PCPs o Distributed via an email software program o Two reminder emails and one phone call ●Itinerant provider survey o Dr. Ellzey distributed via email o Reminder emails sent ●Data analysis

10. Demographics and Response Rate ●Itinerant providers o 10 different specialities o 79% response rate ●Local PCPs o 37 physicians o 20 nurse practitioners o 18 physician assistants o Majority from family medicine and pediatrics o Response rate of 13%

11. Telemedicine ●Differing opinions regarding feasibility of completing an initial assessment ●Explore telemedicine in the future for ongoing care management “Use of telemedicine to provide follow-up between clinic visits” “More telemedicine so that more follow up could be made”

12. Improved communication ●Encourage open lines of communication between local PCPs and itinerant providers ●Explore telemedicine for follow-up care ●Clarify specialist roles ●Increase awareness of services available in the local communities “True collaboration with local providers”

13. Awareness ●Many local PCPs have never referred o Ogden 76% o Rural 51% ●Of those PCPs, many have never heard of the itinerant system o Ogden 72% o Rural 58%

14. Access to Care ●Lack of access to pediatric specialties and subspecialties ●Consistently one of main weaknesses

15. Care management ●Defining responsibility ●Defining roles ●Possibility of more training for local providers

17. Future Directions ●Reevaluate locations ●Standard communication protocol o Focus groups ●Telemedicine

18. References ●Cook, G., Bailey, D. Hall, J., & Peterson, D. (2012). Evaluating the impact of CSHCN satellite clinics. Utah Regional Leadership Education in Neurodevelopmental Disabilities Program (URLEND). Retrieved from www.urlend.org/trainees/files/presentations/2011/CSHCN.docx www.urlend.org/trainees/files/presentations/.docx ●Farmer J.E., Clark, M.J., Sherman, A., Marien W.E., Selva. T.J. (2005). Comprehensive Primary Care for Children With Special Health Care Needs in Rural Areas. Pediatrics. 116(3):649-656. ●Gruen, R. L., Weeramanthri, T. S., Knight, S. S. E., & Bailie, R. S. (2003). Specialist outreach clinics in primary care and rural hospital settings. Cochrane Database of Systematic Reviews, 4. DOI: 10.1002/14651858.CD003798.pub2 ●Hardy, R., Vivier, P., Rivara, F., Melzer, S. (2013). Montana primary care providers’ access to and satisfaction with pediatric specialists when caring for children with special health care needs. The Journal of Rural Health, 29(2):224-232. ●Institute of Medicine of the National Academies (2005). Quality through collaboration: The future of rural health care. Washington, D.C.: The National Academies Press.

19. References ●Lauver, L.S. (2010). The lived experience of foster parents of children with special needs living in rural areas. Journal of Pediatric Nursing, 25(4):289-298. ●McClain, M. R., Cooley, W. C., Keirns, K., & Smith A. A. (2014). Survey of the preferences of primary care physicians regarding the comanagement with specialists of children with rare or complex conditions. Clinical Pediatrics, 53(6), 566-570. DOI: 10.1177/0009922814528035 ●Skinner, A.C., Slifkin, R.T. (2007). Rural/urban differences in barriers to and burden of care for children with special health care needs. The Journal of Rural Health, 23(2):150-157.

20. THANK YOU!