title: Harnessing Teams and Technology to Improve Outcomes in Infants With Single Ventricle.
abstract: Infants with single ventricle require staged cardiac surgery, with stage I typically performed shortly after birth, stage II at 4 to 6 months of age, and stage III at 3 to 5 years of age. There is a high risk of interstage mortality and morbidity after infants are discharged from the hospital between stages I and II. Traditional home monitoring requires caregivers to record measurements of weight and oxygen saturation into a binder and requires families to assume a surveillance role. We have developed a tablet PC-based solution that provides secure and nearly instantaneous transfer of patient information to a cloud-based server, with the capacity for instant alerts to be sent to the caregiver team. The cloud-based IT infrastructure lends itself well to being able to be scaled to multiple sites while maintaining strict control over the privacy of each site. All transmitted data are transferred to the electronic medical record daily. The system conforms to recently released Food and Drug Administration regulation that pertains to mobile health technologies and devices. Since this platform was developed in March 2014, 30 patients have been monitored. There have been no interstage deaths. The experience of care providers has been unanimously positive. The addition of video has added to the use of the monitoring program. Of 30 families, 23 expressed a preference for the tablet PC over the notebook, 3 had no preference, and 4 preferred the notebook to the tablet PC.
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.). gsshirali@cmh.edu.
authors.forename: Girish
authors.initials: G
authors.lastname: Shirali
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Lori
authors.initials: L
authors.lastname: Erickson
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Jonathan
authors.initials: J
authors.lastname: Apperson
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Kathy
authors.initials: K
authors.lastname: Goggin
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: David
authors.initials: D
authors.lastname: Williams
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Kimberly
authors.initials: K
authors.lastname: Reid
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Andrea
authors.initials: A
authors.lastname: Bradley-Ewing
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Dawn
authors.initials: D
authors.lastname: Tucker
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Michael
authors.initials: M
authors.lastname: Bingler
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: John
authors.initials: J
authors.lastname: Spertus
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Leslie
authors.initials: L
authors.lastname: Rabbitt
authors.affiliation: From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.).
authors.forename: Richard
authors.initials: R
authors.lastname: Stroup
mesh_terms: D001292:Attitude to Computers; D006348:Cardiac Surgical Procedures / Q000009:adverse effects / Q000401:mortality; D016507:Cardiology Service, Hospital / Q000458:organization & administration*; D017028:Caregivers / Q000523:psychology; D002675:Child, Preschool; D000067917:Cloud Computing; D034201:Computers, Handheld; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration*; D004059:Diffusion of Innovation; D007722:Health Knowledge, Attitudes, Practice; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000401:mortality / Q000601:surgery*; D006352:Heart Ventricles / Q000601:surgery*; D006801:Humans; D007223:Infant; D017146:Models, Organizational; D010348:Patient Care Team / Q000458:organization & administration*; D011237:Predictive Value of Tests; D017064:Process Assessment, Health Care / Q000458:organization & administration*; D015397:Program Evaluation; D058998:Remote Sensing Technology; D017216:Telemedicine / Q000458:organization & administration*; D013997:Time Factors; D016896:Treatment Outcome
keywords: caregivers; congenital; mortality; survival; telemedicine