Barriers and Solutions to Neonatal

Follow-Up of High Risk Infants in the

State of Utah

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

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

Author Note

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

Problem

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

Goals

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

Quantitative Method

Follow up Rates by Neonatal Intensive Care Units (NICUs)

McKay- DeeNICU

Intermountain Medical Center

NICU

Primary Children’sMedical

CenterNICU

Utah Valley Regional Medical

CenterNICU

University of Utah Medical

CenterNICU

Patients Referre

d to Clinic (#)

30 53 58 58 65

Patients no Show in Clinic

(#)

10 12 16 15 11

Ratio (%)

33 23 28 26 17

Qualitative Method

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

 

Family Focus Group Findings

Questions Common 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

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

Family Focus Group Findings

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

Family Focus Group Findings

Questions Common ThemesWhat 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

Professional Focus Group Findings

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 1st visit

• Parents overwhelmed with medical issues while in hospital versus future developmental issues

Professional Focus Group Findings

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

Professional Focus Group Findings

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

Professional Focus Group Findings

Lack of representation of target group families

Four focus groups with a small sample size

Lack of diversity

Study Limitations

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

NFP Attendance Barriers

Education provided to families & NICU staff

Communication between facilities

Improve NFP and NICU communication for family contact

Additional clinics

Recommendations for Improving NFP Attendance

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

Recommendations for Improving Clinic Satisfaction

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

Suggestions for Further Study

‣ 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

Trainee Recommendations for the URLEND Program