1. Trainees: Juliana Briscoe, Sherrily Brown, Melissa Herzig, Kerry Prout, and Debbie Thomas

2. The authors of this paper wish to acknowledge the faculty mentors for this project:  Mentors: Sarah Winter & Vicki Simonsmeier  Family Consumer Consultant: Christine Evans  Core Faculty: Paula Peterson, JoLynn Webster, Gretchen Peacock, Heidi Lane, and Terry Pavia

3.  Low attendance rates at the Utah Neonatal Follow-Up Program (NFP)  Desire to know what is being done well in clinic  Desire to know what can be improved upon in clinic

4. 1. Identification of NFP attendance trends through quantitative data 2. Identification of NFP attendance barriers through qualitative data 3. Recommendations to the NFP team from research findings

5.  Current attendance trends were identified via data analysis of the NFP follow-up rates from the five largest referral Utah NICU facilities in 2011.

6. Follow up Rates by Neonatal Intensive Care Units (NICUs) McKay- Dee NICU Intermountain Medical Center NICU Primary Children’sMedical Center NICU Utah Valley Regional Medical Center NICU University of Utah Medical Center NICU Patients Referred to Clinic (#) 305358 65 Patients no Show in Clinic (#) 1012161511 Ratio (%) 3323282617

7. Family Focus Group (SLC & Ogden) Professional Focus Group (PCMC & McKay-Dee) ‣Perceptions of program value ‣Identify potential barriers and solutions to NFP attendance ‣Baseline knowledge and value of program ‣Identify potential barriers and solutions to NFP attendance

8.  QuestionsCommon Themes Who referred you to the NFP? NICU team referred families during hospital stay Were there any difficulties with your referral experience to NFP? Families were not aware of the first appointment date Did you receive materials/handouts regarding the NFP and would you consider them helpful or informative? No handouts given in hospital Most didn’t receive appointment letters What is the most important reason or benefit for your family to attend the NFP? Multiple disciplines available to evaluate child's development Answer any questions and obtain education regarding child's progress

9. What challenges or barriers do you face attending the NFP? Long wait time between specialists Child’s performance is not as good at the end of the day as they are tired Lack of communication between specialists during visit What are possible solutions to these challenges/barriers you face? Nap & feed between specialists Provide logistic info before appointment Provide a check off sheet with specialist’s appointments for the day Show child’s progress from previous visit

10. What are the services the NFP provides? Not sure of all services; just the services provided to their child Who funds the NFP and are you aware of any costs to the families? Unsure of funding Aware of insurance being billed

11. QuestionsCommon Themes What services does the NFP provide? Unsure of all services and eligibility What are the advantages to patients and families? See a variety of specialists in clinic Early identification of developmental problems Raises family awareness & support What are the disadvantages to patients and families? Long wait time If families are in denial, may not recognize the benefit of clinic What are the referral criteria for Utah’s NFP? Aware of referral criteria

12. Describe the process/procedures you currently utilize to refer families to the NFP? Two different procedures were presented during focus groups Do the current referral procedures promote successful referral and follow-up to the NFP? Weekly meeting with NFP representative, D/C summary put in mailbox F to F meeting with families regarding the program benefits What may detract from successful referral and follow- up to the NFP? No confirmation from NFP re: referral or date of 1 st visit Parents overwhelmed with medical issues while in hospital versus future developmental issues

13. Who funds the NFP and what is the cost to families? State funding with no cost to families Do you know where the NFP clinics are located? SLC, Provo, Ogden, ? St. George Would you consider the materials/handouts regarding the NFP accessible and informative? Introductory letter is adequate Need handouts to give to families, place in waiting rooms and use to educate clinical professions

14. What solutions might eliminate or minimize the barriers to NFP attendance? Better communication between facilities NFP Presentation to clinical professionals Face to face meetings with parents close to NICU discharge date Share follow-up note at facility & possibly submission of paperwork online

15.  Lack of representation of target group families  Four focus groups with a small sample size  Lack of diversity

16.  Lack of education provided to families & NICU staff  Lack of communication between facilities  Lack of NFP and NICU communication  Distance of clinic locations  Medical vs. developmental priorities  Lack of parental understanding that development needs evaluation over time

17.  Education provided to families & NICU staff  Communication between facilities  Improve NFP and NICU communication for family contact  Additional clinics

18.  Provide a NFP presentation to PCMC Grand Rounds  Feasibility of providers  Check off sheet and check out process  Post-appointment summary  Strategic communication plan  Scheduling consideration

19.  Broaden the diversity of the focus groups  Target participants who are referred to the NFP, but do not attend or have not completed the program  Gather data from community pediatricians

20. ‣Exposure to and problem-solving of systemic, billing and policy issues related to interdisciplinary clinics ‣Increase opportunity and exposure to clinic administration and operations ‣Additional emphasis on diagnoses i.e. CP/Down’s Syndrome ‣Increase family interaction in an informal setting ‣Increase clinical sites for URLEND trainees