612 - Family Centered Care (FCC) proxy measures to identify FCC quality disparities in neonates with life-limiting conditions

Poster Number: 612
Publication Number: 612.14

Suneeta Brito, Virginia Commonwealth University School of Medicine, glen allen, VA, United States; Allison Williams, Virginia Commonwealth University School of Medicine, Richmond, VA, United States; Karen D. Hendricks-Munoz, Virginia Commonwealth University School of Medicine, Richmond, VA, United States; Tazuddin Mohammed, Children's Hospital of Richmond at VCU - Brook Road Campus, Richmond, VA, United States; Jenny R. Fox, CHOR VCU NICU, Richmond, VA, United States

Background: Family Centered Care (FCC) is the gold-standard approach to neonatal medicine which focuses on collaboration between patients and their providers to augment clinical experiences and medical outcome while optimizing allocation of resources. The neonatal population thrives on FCC which bestows valuable goals and strategies when planning for advanced care to those with life-limiting conditions (LLC) who differ from other medically complex patients. Many studies established disparities in healthcare but few have explored them amongst patients with a LLC. Moreover, FCC quality is typically evaluated via prospective survey with no current medical record proxy measures that can be monitored as part of routine care. We are investigating potential proxy measures to monitor healthcare disparities in the quality of FCC provided to neonates with a LCC in the Neonatal Intensive Care Unit.

Objective: Identify potential medical record proxy measures of FCC and evaluate their feasibility, 2) Compare proxy measures of FCC between LLC and non-LLC groups.

Design/Methods: This single center retrospective chart review between 2015 and 2021 identified 50 babies with a LLC over 29 weeks of gestation who lived longer than a week and matched them 1:1 with a non-LLC group based on gestational age over a week old, maternal race, gender and birth year. We used the NHPCO LLC definition as conditions in the pediatric population with which the child is not expected to live to adulthood. Proxy measures of FCC used: domain of family participation (lactation, physical therapy (PT), skin-to-skin), domain of information sharing (family meetings & updates), and dignity and care (pastoral care, supportive care, psychology). We compared the groups using Pearson correlations, linear regression and analyses of covariance (ANCOVAs).

Results: All chosen proxies required family engagement through nursing documentation. We found that while the LLC group had significantly more specialty care visits (p< 0.05) including pastoral care, supportive care, physical therapy and family meetings, they had less skin to skin, lactation support and breastmilk at discharge.

Conclusion(s): This study identified proxies to measure the equity of the quality of FCC provided to neonates with a LLC. We found the LLC group had more exposure to FCC efforts, except for skin to skin and mom’s own milk. Breastfeeding is crucial for neonates with a LLC, for the immunologic protection it confers and for the energy and comfort through illnesses and procedures. Future research should examine these potential healthcare disparities in lactation support.