Technology-enabled Patient Support System for Self-management of CF

The University of Alabama at Birmingham

Status: Completed

Conditions: Cystic Fibrosis

Treatments: Other: Open-platform patient support system (PSS) app

Study type: Interventional

Funder types: Other

Identifiers

NCT03910881

300001749

Details and patient eligibility

About

This project will test a technology-enabled patient support system (PSS) as a self-management tool for children with CF and their family caregivers.

Full description

The goal of this study is to refine and test a technology-enabled patient support system (PSS) as a tool for self-management of pediatric CF. The PSS includes two components: 1) patient-facing: an app with customizable dashboards for tracking patient-generated outcome measures and providing personally relevant decision-making support; and 2) clinic-based: clinical patient management and technical support. Using a one-group pretest-posttest design, we will evaluate the effect of the adapted technology-assisted PSS on patient-reported outcomes (PROs). Study hypothesis: Among pediatric CF patients treated at the UAB CF Center, the use of technology-aided PSS over 6 months will improve health-related quality of life (primary outcome) as well as patient satisfaction, patient activation, and shared decision-making (secondary outcomes).

Enrollment: 40 patients

Sex: All

Ages: 15+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

Diagnosis of Cystic Fibrosis -

Exclusion criteria

None

Trial design

Primary purpose: Other

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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40 participants in 1 patient group

open-platform patient support system

Experimental group

Description:

Proof of concept testing of app

Treatment:

Other: Open-platform patient support system (PSS) app