JMIR Publications

ABSTRACT

Background:

Many neonates have difficulty advancing oral feeding due to prematurity or congenital anomalies and may benefit from discharge to home with nasogastric tube (NG) feeds. Remote patient monitoring (RPM) programs may promote better outcomes for these patients and families but have often been implemented without specific input from families.

Objective:

Using a user-centered design (UCD) process, our goal was to enhance our center’s RPM program for families of infants being discharged with an NG tube and identify desired features that could be applicable to all pediatric RPM programs for infants with complex needs.

Methods:

Using a 6-step UCD process, we investigated the needs of families using RPM; identified, prototyped, and developed new interventions; and then validated the developed interventions through a pilot pre/post study. For the pre/post study, we enrolled 25 families each in standard RPM or enhanced RPM (ERPM) and collected data on use, usability, and clinical outcomes, including patient growth and healthcare utilization. Usability was measured by the validated Software Usability Scale (SUS) and Pediatric Transition Experience Measure (P-TEM).

Results:

Texting capability, easy access to help, and ability to monitor progress were the key facilitating features of RPM identified by families. Family-identified barriers included anxiety, isolation, and discouragement. Through UCD, we developed the following new features for ERPM: (1) weekly messages on growth and feeding progress, (2) NG educational materials and videos made available in the ERPM app, (3) information on parent-led support groups, and (4) encouraging messages celebrating important milestones. Use of RPM as measured by percent of weekly weight submissions was high in both standard and ERPM groups at 83 and 80% of offered opportunities respectively. Both groups rated RPM as highly usable by SUS assessment with scores of 91 in the standard group and 86 in the ERPM group. P-TEM top box scores were higher in the ERPM group, suggesting that UCD changes enhanced the experience of families at home. Families in ERPM utilized educational resources more often (12% standard vs. 44% ERPM, p=0.0117). Post-discharge growth and healthcare utilization were not significantly different between groups.

Conclusions:

Using UCD, we were able to identify features of RPM that are important to families caring for complex infants at home. These features should be applicable to any RPM program providing in-home support to families and infants with growth, feeding, or other medical needs. RPM was rated highly usable by families.