IMPLEMENTATION OF OUTPATIENT PHYSICAL THERAPY MONITORING FOR INFANTS WITH CONGENITAL HEART DISEASE AFTER DISCHARGE FROM AN INFANT CARDIAC NICU

Purpose: Congenital heart defects (CHD) are the most common type of birth defect. Diagnosis requires admission to a specialized cardiac infant NICU for management. These infants are at risk for developmental delays. This abstract describes an outpatient physical therapy model of assessment and intervention in a population of infants with CHD of varied complexity.

Description: Infants with CHD ranging in age from 2 weeks to 4 months who have undergone surgical repair (or the first step of a multi-staged repair) and are discharged home are routinely referred for outpatient physical therapy at our center. Diagnoses include Atrial Septal Defect, Ventricular Septal Defect, Patent Ductus Arteriosus, Coarctation of the Aorta, Tetralogy of Fallot, Mitral Valve Stenosis, Pulmonary Valve Stenosis, Transposition of the Great Vessels, and Ebstein's Anomaly. Outpatient physical therapy sessions are clustered with other appointments to decrease the frequency of return to the hospital.

The Alberta Infant Motor Scale (AIMS), a standardized observational examination tool, is administered at each visit. The scoring sheet (containing an image and short description of the movement/skill to be assessed) is used to help parents understand components of movement that combine to produce motor skills and how the home program supports desired outcomes. The caregiver is instructed in the provision of activities that support current skills (particularly motor and cognitive) and promote future skills.

Summary of Use: Regardless of diagnosis, infants typically demonstrated motor skills between the 1st and 4th percentile on the initial visit. Delayed prone positioning due to medical precautions, decreased general spontaneous movement during an extended hospital course, and parent anxiety in positioning their child once home are all felt to contribute to this. Plagiocephaly/torticollis is a frequent co-occurrence. Outpatient follow-up continues throughout the duration of medical management with the goal of independent ambulation. Over time, AIMS scores improved to the 10th to 75th percentile, reflecting significant gains in gross motor skill development. More substantial improvement was noted in infants who returned more consistently for follow-up.

Importance to Members: This delivery model demonstrates that infants with CHD (who often have delays in initiating and implementing Early Intervention services due to the nature of their illness and limitations in the system) can benefit from outpatient physical therapy assessment and intervention at a reduced frequency. This population of infants often requires frequent and prolonged medical and surgical follow-up and the reduced frequency utilized in this monitoring model places less demand on the infant and family. Feedback was overwhelmingly positive from individual caregivers, reflecting their increased sense of empowerment through developmental knowledge and hands-on interventions to support their child.