Technology-enabled Patient Support System for Self-management of Pediatric Cystic Fibrosis
Technology-enabled Patient Support System for Self-management of Pediatric Cystic Fibrosis
This project will test a technology-enabled patient support system (PSS) as a self-management tool for children with CF and their family caregivers.
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).
Inclusion Criteria:
Diagnosis of Cystic Fibrosis -
Exclusion Criteria:
None
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