Early Outcomes of Nurse-Led Outreach for Lost to Follow-Up Patients after Pediatric Heart Surgery

The primary aim of this paper is to review the efficacy of a clinical outreach program aimed at reducing the number of CHD survivors who are lost to follow-up (LTF). The secondary aim was to identify common reasons for the delays in timely follow-up care.

A retrospective review was initially conducted. A total of 1555 records of patients who had congenital heart surgery over a 33-year period (1989 to 2022) were reviewed for follow-up status. Patients who had not been seen by a cardiology provider for at least 18 months at the time of review were deemed LTF and were eligible for outreach. A nurse outreach coordinator attempted to contact all LTF patients for clinical purposes. A total of 254 patients (16%) were identified as LTF and needing outreach to re-establish care. Following outreach, a descriptive study was performed to assess follow-up data following clinical outreach. Barriers to care were also assessed during outreach. Contact was successfully made with 158 of these patients (62%), and 93 (37% of those called) agreed to schedule follow-up appointments resulting in a total of 57 (22% of those called) who completed follow-up cardiology appointments, including three catheterization reinterventions. The most frequent reasons for lack of follow-up included moving out of the area, living far away, and insurance issues, while other reasons for not following up included being asymptomatic and not knowing they should be regularly followed.

Targeted outreach to patients LTF after pediatric cardiac surgery can maintain continuity of care. Specific systems improvements for proactively identifying patients at risk of loss to follow-up, tracking these patients, as well as increased barrier assessments and ongoing education may help mitigate the number of patients lost to follow-up.