Family Focus Restructures Single Ventricle Care

Standardize, connected care in a multidisciplinary team environment aims to improve outcomes and quality of life for patients born with single ventricle heart anatomy.

Children with single ventricle anatomy, one of the most harrowing of congenital heart defects, face unique challenges that require multiple procedures and hospital admissions to treat. In most institutions, each admittance is disconnected from the ones before and the care – though it may be high quality – is not standardized.

In light of this, the leadership of The Heart Center at Nationwide Children’s Hospital established a multidisciplinary comprehensive Single Ventricle Team (SVT) in 2013 to redefine how to care for high-risk patients with single ventricle anatomy.

The process of creating the SVT and improving outcomes and quality of life for infants with CHD was outlined in a recent publication in Congenital Heart Disease.

“We have two main goals within our team: enhanced outcomes – decrease in mortality and morbidity, good neurodevelopment, high quality of life – and being contemporary with the literature,” says Karen M. Texter, MD, medical director of the Single Ventricle Program and a cardiologist in The Heart Center as well as lead author on the study. “An interdisciplinary and comprehensive program run by a small core group allows us to do that as well as increase family support to provide the best care through this lifelong journey.”

The SVT’s longitudinal structure relies on one Single Ventricle nurse practitioner who remains with the family for the entire medical journey of a patient seen by the SVT, starting from diagnosis – often, before the patient is born. Cardiologists, nurses, nurse practitioners, developmental pediatricians, feeding specialists and therapists, social workers and psychologists in the SVT work with the nurse practitioner to contribute their expertise for better outcomes while ensuring coordinated care for every patient.

“Providing standard care doesn’t push the envelope to advancement. By bringing together a team of critical thinkers, innovation in care will evolve faster,” says Timothy F. Feltes, MD, co-director of The Heart Center at Nationwide Children’s, senior author of the study, and part of the leadership that advocated for the creation of the SVT. “The Heart Center is committed to achieving the best outcome for our single ventricle patients and to achieve this, we had to bring together a group of physicians, nurses and other health care providers whose primary focus is on the details of the specialty care needed for these children.

Quality Improvement (QI) analyses are ongoing, but even in the SVT’s nascent years, clear trends of decreasing interstage mortality, increasing quality of life and increasing reliability of care are emerging. Currently, QI tools are integrated into the everyday function of the team in the form of complex protocols for each stage of care in a patient’s time in the hospital. These protocols are then measured for compliance as well as their effect on patient outcomes.

“We don’t want our single ventricle team to live in a vacuum,” adds Dr. Feltes. “We want them to interact and share with colleagues from across the country and around the world so that together we can help all children born with single ventricle.”

Reference:

Texter KM, Davis JM, Phelps CM, Cheatham SL, Cheatham JP, Galantowicz ME, Feltes TF. Building a comprehensive team for the longitudinal care of single ventricle heart defects: Building blocks and initial results. Congenital Heart Disease. 2017 Jul 26 https://doi.org/10.1111/chd.12459 [Epub ahead of print]