O2112: Following Through on Follow-Through: Perspectives from Family, Staff, and National Experts on Quality Improvement Targets for High-Risk Infant Follow-Up Programs

Background: High-risk infant follow-up (HRIF) programs exist to monitor and optimize outcomes for medically complex infants after NICU discharge. However, fewer than half of eligible children attend such programs, and even more stop attending after their first appointment. Quality improvement (QI) initiatives could address the perceived low value and improve follow-through yield if the root challenges to participation were more clear. A qualitative approach may effectively capture the experience of patients and other key partners to identify current unmet needs in follow-through, including potential targets for improving program quality and value.

Methods: Our study setting was a HRIF clinic situated within a quaternary-care medical center. Participants were primary caregivers of patients recently enrolled in the clinic (n=6) and clinic staff members across various disciplines (n=9). Clinical and public health experts were also interviewed about HRIF in general (n=4). We conducted semi-structured interviews to explore best practices, barriers, facilitators, and other areas of patient experience in HRIF. Coding was performed by two independent coders with reliability checks using a third coder to ensure inter-rater consistency. A grounded theory approach was used for thematic analysis. Themes are reported if a majority (≥50%) of unique participants highlighted it, then categorized as either strengths or unmet needs.

Results: Facilitators and Strengths: Among staff and caregivers, main themes around HRIF strengths and facilitators for participation were: 1. staff expertise with a multidisciplinary approach, 2. strong patient-provider communication, and 3. the availability of subspecialty care within a quaternary-care children’s hospital. Staff, but not families, identified successful transition to other services as a strength, indicating a discrepancy between what services are recommended and what families are able to access after program graduation. National experts identified benefits in connecting to community resources that families may or may not be aware of without providers recommending them.

Barriers and Weaknesses: Among staff and caregivers, main themes around HRIF weaknesses and barriers to participation were: 1. the lack of connections among participating families, 2. poor collaboration with community services such as Early Intervention, and 3. difficulties coordinating referrals. Staff, but not families, also identified a need for better program navigation resources, especially with the limited bandwidth of a single social worker, and a concern that families are not always comfortable being honest. National experts noted that HRIF programs lack explicit application of a health equity lens.

Conclusion: Elucidating HRIF program strengths and weaknesses through semi-structured interviews offers critical insights to inform and contextualize QI initiatives. Additionally, this work provides a unique opportunity to shape needed best practice guidelines in HRIF related to transition periods, collaboration with community services, and family-centered system navigation.