1. Evaluating the Impact of CSHCN Clinics Utah Regional LEND Faculty mentor: Stephanie McVicar and Rich Harward Team members: Quin Card, Lauren Eimers-Wangrud, Nicole Macy, Dionne Spooner, DJ Sullivan, and Monica Weston

2. Background and Funding for CSHCN Clinics The Utah Department of Health – Operates 28 satellite pediatric clinics in 7 locations throughout the state – primarily funded with federal MCH grants and additional state funding – Maternal & Child Health Bureau promotes Family Centered Care (FCC) FCC is a partnership approach to health-care in which the family and health care providers work collaboratively to achieve the best possible outcomes for the patient and family Challenges for implementation of the FCC principles – Importance of family and their involvement at every level of the healthcare system – Ensuring family needs leading care

3. Family Centered Care Research FCC is best practice FCC is correlated with positive outcomes Established the need for reliable and valid research tools for measuring FCC and CSHCN outcomes

4. Current Project Assess the areas of need in itinerant clinics that serve families with special health care needs. Survey Design Goal of FCC Screener II – improving the survey – gathering audiological feedback

5. Method and Survey Design Utilized modify existing survey, FCC Screener I History of FCC Screener I – 2009 survey was distributed to families who had children with disabilities that received services from CSHCN itinerant pediatric satellite clinic. – Not statistically validated due to low participant response. – Focus on families who had children with Autism Spectrum Disorder (ASD) Modifications to for current survey, FCC Screener II Replacing the ASD section with information from families who had children with hearing impairment Improving wording for reader clarity

6. Method Survey Implementation Paper survey via U.S. mail – Included self-addressed stamped envelope Voluntary completion and return Anonymous Did request clinic the family attended

7. Method Population 150 Families attending CSHCN itinerant pediatric satellite clinics in Fall 2012 45 responses 4 responded to hearing loss addition 30% response rate

8. Results When comparing population location and the four different variables there is no statistical significance between the locations. Regardless of location or population size the "satisfaction" ratings were pretty equal across the various locations. When comparing condition severity and the four different variables there is also no statistical significance between severity of condition and "satisfaction" variables. Regardless of whether the condition is more severe or less severe, patients tended to rate their level of service pretty similarly.

9. Small Population

10. Medium Population

11. Large Cities

12. Discussion  44% use CSHCN Clinics as regular source of care  88.9% happy with referrals given  11/45 families wish clinics were more frequent  26/45 families felt staff is friendly, polite, and very professional  Families attending clinics for hearing loss had an average 3.5 score across the hearing loss survey questions  Of those responding to the hearing loss survey, all stated that they received the help they needed.

13. Questions and Comments?

14. Quin Card More clarity on the URLEND website. My recommendation would be to organize assignment information under one link on the website. Currently, there are links for some of the assignments, but not all. This could be implemented by forming one topic link, then adding links for each assignment and a brief description of what is required. (Leg. Assignment, South Main Clinic, PDC’s This would aid in leadership development because the explanations & expectations would be clear and in one location, freeing up time to focus more on the big picture rather than format & basic requirements.

15. Lauren Eimers-Wangrud Great leadership experience Possible change could be email contact with former URLENDers  Get advice and feedback from experience  Allow us to research methods that worked well or not so well in the past  Assistance in trouble-shooting

16. Nicole Macy 1. I would suggest a consistent and reliable method of communication and exchange of information. a. This could be implemented by standardizing collaboration method. b. Consistent and reliable method of communication would limit miscommunication and task/ responsibility confusion.

17. Dionne Spooner 1.I think more steps need to be taken to assure that distant sites are able to be connected for all components. 2.I really enjoy the small group projects running throughout the program to allow for development of a solid project 3.I would recommend more family involvement during presentations – such as co-presenters to show both sides of issues

18. DJ Sullivan Include a midpoint accountability evaluation and reiteration of goals and assignments 1) Implement a half-day evaluation (with as many trainees as can attend) of goals achieved and project completion to date. Spend time going over 2nd half assignments, projects, and lectures. 2) This would improve leadership as it would require individuals to be accountable for their work to a specific point. Additionally, it would help trainees plan, prioritize, and organize for the next few months.

19. Monica Weston Give more description on requirements More clear directions given at the beginning of URLEND on assignments and requirements (i.e. PDC, Legislation and powerpoint presentation) It could be implemented at the beginning during the orientation. Perhaps a section where all the activities/assignments are reviewed. Place the projects and assignments on the contract. The requirements listed above were not on the contract. This would make me a more affective leader because I would have a more clear idea of projects that I need to work on. It would help me in my organization, planning and implementation of these components.

20. Thank you!