Top Things to Know: Interstage Home Monitoring for Infants With Single Ventricle Heart Disease
Published: August 11, 2020
Prepared by Paul St. Laurent, DNP, RN, Sr. Science and Medicine Advisor, Lead
- In the recent era of congenital heart disease management, there has been a dramatic improvement in outcomes for infants with hypoplastic left heart syndrome (HLHS) and related variants that require staged palliation for single ventricle heart disease (SVHD) with aortic hypoplasia.
- For infants with SVHD, the interstage period has been defined as the time of discharge from the initial palliative procedure (S1P) to the time of second stage palliation (S2P).
- Prior to 2000, the post-discharge care provided following S1P surgery lacked the level of surveillance needed to manage this high-risk population with published mortality rates as high as 16% between discharge following S1P and S2P.
- Adoption of an innovative home monitoring strategy developed by Ghanayem and colleagues in 2003, Interstage Home Monitoring (IHM), has been associated with significantly improved morbidity and mortality, decreased major event readmissions, and improved growth.
- IHM has become the standard of care for most pediatric cardiac programs and continues to evolve utilizing telehealth platforms such as mobile technology and tablet-based real-time video encounters to optimize data collection and visual assessment of the infant at home.
- The IHM team typically consists of pediatric cardiologists, nurses, advanced practice providers, dieticians, occupational and physical therapists and/or speech-language pathologists knowledgeable in inpatient and outpatient management of infants with shunt-dependent SVHD.
- The foundation of IHM is routine caregiver home surveillance of oxygen saturations, enteral intake, and weight change during the interstage period; and early healthcare team notification of any abnormal parameters labeled as “red flags” or other changes in clinical condition.
- Red flags include oxygen saturation ≤75 % , failure to gain 20 g (=0.02 kg) in 3 days, weight loss ≥ 30 g (=0.03 kg), enteral intake < 100ml/kg/day, cyanosis, pallor, irritable, fussy, diarrhea or vomiting, increased sweating, respiratory changes (tachypnea, distress) and temperature > 100.4° F.
- Caregiver education should begin early during the inpatient stay and include training in equipment use, daily measurements, and recording and interpreting data. In addition, medical knowledge of their infant’s condition, medication administration, general infant care, preparation of formula, feeding administration, schedules for follow up appointments, and IHM team contacts should be provided.
- Well-coordinated, comprehensive communication of the hospitalization, surgical palliation, and IHM plan of care between all healthcare providers is vital for effective management of the highly complex, fragile infant in the outpatient setting.
Citation
Rudd NA, Ghanayem NS, Hill GD, Lambert LM, Mussatto KA, Nieves JA, Robinson S, Shirali G, Steltzer MM, Uzark K, Pike NA; on behalf of the American Heart Association Council on Cardiovascular and Stroke Nursing; Council on Lifelong Congenital Heart Disease and Heart Health in the Young; Council on Arteriosclerosis, Thrombosis and Vascular Biology; Council on Clinical Cardiology; and Council on Lifestyle and Cardiometabolic Health. Interstage home monitoring for infants with single ventricle heart disease: education and management: ascientific statement from the American Heart Association. J Am Heart Assoc. 2020;9:e014548. doi: 10.1161/JAHA.119.014548