CHILDREN WITH SPECIAL HEALTH CARE NEEDSLOCAL 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

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.

CSHCN Itinerant Clinics2012 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

BlandingMoabPrice RichfieldSt. GeorgeVernalOgden

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

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

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

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

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

Procedures

● Survey for local PCPso Distributed via an email software programo Two reminder emails and one phone call

● Itinerant provider surveyo Dr. Ellzey distributed via email o Reminder emails sent

● Data analysis

Demographics and Response Rate● Itinerant providers

o 10 different specialitieso 79% response rate

● Local PCPso 37 physicianso 20 nurse practitionerso 18 physician assistantso Majority from family medicine and pediatricso Response rate of 13%

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”

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”

Awareness

● Many local PCPs have never referredo Ogden 76%o Rural 51%

● Of those PCPs, many have never heard of the itinerant systemo Ogden 72%o Rural 58%

Access to Care

● Lack of access to pediatric specialties and subspecialties

● Consistently one of main weaknesses

Care management

● Defining responsibility

● Defining roles

● Possibility of more training for local providers

Future Directions

● Reevaluate locations

● Standard communication protocolo Focus groups

● Telemedicine

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

● 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.

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.

THANK YOU!