P2.A020: A Qualitative Needs Assessment of Early Participants in an Enhanced Recovery After Surgery (ERAS) Program in Congenital Heart Disease

Background: Congenital heart disease (CHD) is the most common birth defect worldwide, often requiring surgery before adulthood. Although medical advancements have improved the mortality of CHD, morbidity still exists, impacting patient quality of life (QoL). Specifically, returning to baseline in the early surgical recovery phase is an area of potential improvement, as little is known about the family experience during this period. This preliminary project aims to qualitatively understand family perspectives concerning the immediate post-operative recovery phase for CHD patients, with the ultimate goal of enhancing patient-centered experiences after surgery.

Methods: In this cross-sectional study at a large pediatric center, participants were identified as children with CHD undergoing cardiac surgery at ages 4-17 years. The patients were a part of a broader Enhanced Recovery After Surgery (ERAS) program (Figure 1). ERAS, while widely implemented in adult surgery, is only recently being utilized in pediatrics. The goals of ERAS are minimizing opiates, nausea/vomiting, delirium, and delayed ambulation. In the first 6 months of the project, 27 patients were called at least one month after surgery. Families were asked open-ended questions regarding the difficulties of that first week home, and reviewed a list of symptoms including: difficulties with pain, nausea, activity, sleep, appetite, bowel or urinary systems, and taking medications. A qualitative thematic analysis was then performed utilizing language clustering with the open responses and a quantitative assessment of types of issues that made recovery challenging.

Results: Of 27 consented families, 23 participated in interviews. In the first week home, participants struggled most with sleep (78%), returning to activity (70%), and pain (57%). Fewer endorsed symptoms of nausea (8.7%), appetite changes (22%), bowel or urinary changes (35%), and difficulty taking medications (30%). Open-ended responses suggested that an inability to do daily activities, sleep (frequently impacted by pain), and inadequate resources most negatively impacted recovery (Figure 2). Aspects that enhanced families’ recoveries involved controllable symptoms and accessible guidance from the care team.

Conclusion: In the first week after surgery, participants struggled most with sleep, activity level, and pain. This was readily noticed by families, evidenced through their open-ended responses. Investigating post-operative sleep regimens and effective pain plan components may therefore prove useful, in addition to early PT/OT referrals. Given the positive and negative experiences that highlighted the desire for readily available medical guidance, we also recommend frequent and open communication between families and team members, potentially aided by digital tools to lower the communication burden. As this is a small, homogenous sample, further research is necessary to evaluate whether this information is center specific, and the commonalities amongst families with similar experiences. Ultimately, further data could support the development of a standardized protocol to better the immediate post-operative QoL of families with CHD and other surgical conditions.