Safe at Home

December 2020 marks the ten-year anniversary of Safe at Home (SAH), the interstage home monitoring program at Children’s Health Dallas’ Heart Center. Interstage is defined as the period between stage one palliation of single ventricle patients and the Glenn operation. Our program has grown substantially by joining the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), expanding the patient population monitored, utilizing technology, and growing our team.

Prior to creating SAH, our center’s outcomes required improvement in ability to discharge with an interstage mortality rate of 17%. Barriers to discharge included lack of adequate caregiver education, infrequent and/or inconsistent outpatient cardiology follow-up and distance to care center. A small working group developed discharge education for caregivers including journey boards, a visual depiction of tasks and essential learning required by caregivers prior to discharge. A 48-hour parental room-in prior to discharge allows an opportunity to practice caring for and monitoring their infant independently in a supportive nursing environment. A discharge checklist helps track progress toward discharge readiness. We purchased home monitoring equipment, pulse oximeters and infant scales, to loan to each family. We standardized outpatient cardiology follow-up by scheduling weekly clinic visits with guidelines on imaging. An advanced practice provider (APP) call system was created, allowing families direct phone access to an APP for red flag events or questions. Four SAH APPs rotate call, fostering APP familiarity with individual patients and consistency for families. The APPs serve as core members of our SAH team which includes cardiologists, a psychologist, social workers, a dietitian, case managers, intensive care physicians, and surgeons.

Shortly after starting our SAH program, we joined the NPC-QIC. Phase one of NPC-QIC’s initiative focused on decreasing interstage mortality by standardizing interstage monitoring of outpatients with hypoplastic left heart syndrome. Our SAH team has consistently participated in NPC-QIC’s conferences and has adapted several ideas from the learnings of NPC-QIC including the use of interstage digoxin, feeding protocols, and strategies to improve communication across the patient’s care team. Interstage mortality rate in the NPC-QIC decreased from 9.5% to 5.1%, and our center’s interstage mortality rate decreased from 17% to 1.4%.

NPC-QIC’s phase two growth prompted the development and expansion of our Safe in House program, starting in August 2016. This has resulted in standardizing inpatient care for patients unable to discharge interstage secondary to atrioventricular valve regurgitation, difficult social situations, arrhythmias requiring dual medication therapy, and/or a feeding regimen not practical for home. Currently, our Safe in House interstage mortality for NPC-QIC patients is 4.6% (not previously tracked for comparison). In addition, we are evaluating barriers to early extubation, early feeding and identification of patient subsets who require transplant. We are looking closely at patient outcomes beyond the time of the second stage palliation. This has helped us follow growth closely. Our center routinely discharges patients with a nasogastric (NG) tube. On data review, it shows that 58% of patients are discharged home with an NG tube; of these patients, approximately half were able to be NG tube-free at time of admission for Glenn.

Technology has significantly impacted the SAH program. We utilize an on-call cell phone to which parents can directly call, text, or send pictures. We believe this informal, direct access to an APP familiar with the patient substantially improved communication between caregivers and the SAH team. Approximately three years ago, we partnered with Locus Health who developed an iPad app for documentation of daily home monitoring data: oxygen saturations, weight, and intake/output. Documentation within the app allows the SAH APP’s and cardiologists to review daily data and monitor trends in real-time. Daily review of parent-entered home monitoring data has revealed trends prompting earlier intervention with either cardiac catheterization or surgery.

We will continue to evolve our program to provide patients with the highest quality of care. Current projects include evaluation of unplanned interventions, expanding patient population, revision of inpatient feeding protocol, and establishing a NG tube weaning guideline.