.jpg "Peta Alexander, MBBS, FRACP photo")
Peta Alexander, MBBS, FRACP
Staff Physician
Boston Children's Hospital
Boston, Massachusetts
Disclosure information not submitted.
Sally Vitali, MD
Senior Associate in Critical Care Medicine
Boston Children's Hospital, United States
Disclosure information not submitted.
Steven Brediger, RRT-NPS
Mechanical Circulatory Support Coordinator
Boston Children's Hospital, United States
Disclosure information not submitted.
Nitin Gujral, BS MS MBA
Technical Advisor, Innovation and Digital Health Accelerator
Boston Children's Hospital
Boston, Massachusetts, United States
Disclosure information not submitted.
Lynn Sleeper, Sc.D
Scientific Director, Clinical Cardiology Research Program
Boston Children's Hospital
Boston, Massachusetts, United States
Disclosure information not submitted.
Jill Zalieckas, MD, MPH
Associate in Critical Care Medicine; Assistant in Surgery
Boston Children's Hospital, United States
Disclosure information not submitted.
Francis Fynn-Thompson, MD
Cardiac Surgeon
Boston Children's Hospital, United States
Disclosure information not submitted.
Meena Nathan, MD MPH
Cardiac Surgeon
Boston Children's Hospital, United States
Disclosure information not submitted.
Ravi Thiagarajan, MD, MPH
Chief, Division of Cardiac Critical Care
Boston Children's Hospital, United States
Disclosure information not submitted.
Nilesh Mehta, MD
Senior Associate in Critical Care Medicine
Boston Children's Hospital, United States
Disclosure information not submitted.
Title: Remote capture of long-term patient-reported outcomes (PRO) in ECMO survivors - a pilot study
Introduction: Long-term data on post-discharge clinical and quality of life outcomes are available in fewer than 35% of pediatric ECMO survivors. We aimed to explore the feasibility of a novel digital platform for remote capture of functional outcomes in this cohort.
Methods: In a prospective, single-center pilot study, we developed and implemented a smartphone/tablet 'application' for remote reporting of clinical and functional outcomes by patients/parents after discharge. The application incorporated 3 discrete questionnaires; a resource utilization survey, the Functional Status Score, and the age-based PedsQL4.0. After iterative fine tuning of the application during field testing between July 2018-February 2019, ECMO survivors ( < 18yrs old) were approached for consent between May 2019-January 2021. Non-English-speaking patients were excluded during this pilot phase. Patients/parents received the questionnaires via email or smartphone (based on their preference) at 5 timepoints: after consent (pre-ECMO data); hospital discharge; 1 month; 6 months; and 1 year after hospital discharge. Feasibility was defined by consent and survey completion rates. We used a one-sided Fisher exact test to examine the increment in completion of 6-month outcomes data compared to the historically low rate of 35% at our center.
Results: Twenty-one patients participated in the field testing phase. During the study period, there were 57 ECMO survivors. We approached 31 patients for consent, 25 patients were enrolled (80% consent rate). Surveys were deployed via the application to 22 patients. Response and outcomes data were remotely captured for discharge (77%), 1-month (78%), and 6-months after discharge (86%). Post-discharge PRO were available for more eligible ECMO survivors during this pilot study (19/31, 61%) than prior (25/71, 35%, p< 0.001).
Conclusions: Remote capture of long-term outcomes data is feasible using an electronic internet-based application. A commitment to record PRO to guide best practices is a core component of patient and family centered care. Our intervention to remotely capture outcomes is particularly relevant during the current pandemic. With further fine-tuning, the intervention could allow documentation of functional outcomes, resource utilization and family quality of life after critical illness.