Nurse-led outreach re-engages cardiac surgery patients lost to follow-up - Children's National

A single center study at Children's National analyzed more than 1,500 patient records from the last 33 years and found 16% of patients in that time range had not been seen by a cardiologist in at least 18 months and considered "lost to follow-up" after cardiac surgery.

However, a cardiac nurse-led outreach program successfully re-connected with more than a third of them to schedule follow up appointments. Through these interactions they also offered health education about the critical nature of follow-up and helped resolve barriers that previously kept people from seeking follow-up care. The study was published in the European Journal of Cardiovascular Nursing.

What it means

Despite more successful surgical repairs and treatments available than ever, congenital heart disease (CHD) remains a lifelong diagnosis that requires continual care to assess for and intervene when there is a life-threatening issue.

The authors initially reviewed the records of 1,555 patients who underwent surgical repairs for congenital heart disease categorized as benchmark procedures by the Society of Thoracic Surgery Congenital Heart Surgery Database, including repairs of aortic arch anomalies, tetralogy of Fallot (TOF), atrioventricular septal defect (AVSD), transposition of the great arteries (TGA) and Fontan palliation at Children's National. They found 254 patients (16%)were lost to follow up at this one institution.

However, the study demonstrated that a dedicated system of outreach to those lost to care can be leveraged to bring some people back into routine assessment. A program led by a nurse with significant experience in congenital heart disease and its repair succeeded in reaching 158 (62%) of the lost group. The nurse sought to remove barriers to follow-up and guide people back to the appropriate care provider. More than 90 people (37%) agreed to schedule follow-up appointments, with 57 of them completing cardiology appointments at Children's National.

Why it matters

There is significant research showing that the risks of premature morbidity and mortality in people with congenital heart disease increase when there is no routine follow up by a cardiac specialist.

Over time, those who are lost to follow-up are more likely to experience an emergent issue requiring urgent intervention. Unfortunately, many families struggle with maintaining lifelong, routine cardiology appointments. It is important for care providers to understand the external factors that may play a role in whether they continue follow-up. At Children's National, the study identified distance, insurance issues and a perception of overall wellness as factors impacting the likelihood of attending follow-up visits. Transportation, scheduling conflicts and health literacy levels also played a role.

Children's National leads the way

In this study, the team designed a pilot, nurse-led program aimed at drawing in some of those previously lost to care. Feedback from those who were reached helped the center make immediate process changes for current patients, to help prevent future loss. For example:

• Appointment no-shows or cancellations are now tracked and reported monthly so a designated outreach coordinator can proactively contact families to reschedule and address any barriers.
• The outreach coordinator also places follow-up orders for future visits within the medical record for patients based on their last follow-up note.

"We have begun to shift the mental burden of follow-up to the health care system…These small practice changes can ensure long-term continuity of care and healthcare utilization for CHD patients," the authors wrote.

They also note that the next wave of research into patients lost to follow-up should focus on understanding the true barriers to care, designing additional measures that mitigate the numbers of families who are lost and identifying appropriate counseling during preliminary post-surgical cardiology visits to make sure families know the risks to health that are associated with future lack of follow up.