Starzl Network Patient Reported Outcomes

Completed · Not applicable

Conditions studied: Liver Transplant; Complications, Quality of Life, Child Behavior, Adolescent Behavior

In brief

This study uses a smartphone application/web interface (RealTime Clinic; RTC) to collect patient and parent reports of a pediatric liver transplant recipient's quality of life (QOL), and examines the extent to which QOL evaluations can be integrated into care with the help of the application. The QOL measure that is used in this study is the Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire. Utilization, effectiveness, and efficiency data are evaluated. Hypotheses are fully described in the protocol. The primary hypothesis is that 80% of recruited child-proxy dyads will have at least one RTC-enabled PeLTQL score at 12 months. Other hypotheses look at implementation metrics and patient outcomes.

Key facts

Study ID

NCT05241847

Run by

University of Pittsburgh

People needed

200

Starts

2022-02-28

Expected to finish

2025-07-30

Last updated by the study team

2026-01-08

Who can join

Age: 8 and older, up to 20. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• The patient must meet all of below criteria to be eligible for enrollment in the study:
• The patient is > 8 at enrollment and < 20 years of age at 2 year post enrollment.
• The patient received a liver transplantation at least 1 year prior to enrollment.
• The patient and parent/ guardian have internet access either through a smartphone, tablet or computer.
• The patient and at least one guardian speaks English or Spanish at a level that allows them to understand the study procedures and consent to the study.

You may not qualify if…

• None of the following may be present if the patient is to be eligible for enrollment in the study:
• The patient is expected to transition to another service (e.g., adult clinic, another hospital) in the year following enrollment.
• The guardian or patient (in a developmentally-appropriate manner) do not understand the study procedures. This will be verified by asking both guardian and adolescent to repeat the study procedures.

Where it is running

• UCSF Benioff Children's Hospital — Oakland, California, United States
• Emory Children's — Atlanta, Georgia, United States
• Columbia University Children's — New York, New York, United States
• Mt. Sinai — New York, New York, United States
• UPMC Children's — Pittsburgh, Pennsylvania, United States
• Seattle Children's — Seattle, Washington, United States
• Toronto Sick Kids — Toronto, Ontario, Canada

Full record on ClinicalTrials.gov

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