Implementation of a Clinical Tool to Improve Waitlist Mortality in Patients With Cystic Fibrosis
The aim of this project is to implement a clinical tool utilizing predictors of mortality for patients with Cystic Fibrosis (CF) on the waiting list to identify candidates that should present for urgent medical care and, if appropriate, will prompt clinicians to update a candidate's lung allocation score (LAS), the score used to prioritize lung transplant candidates for transplant by medical urgency, and avoid undetected decline. The clinical tool consists of home spirometry measures and patient reported outcomes that is completed weekly on a mobile application device used clinically to track spirometry.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
PREVENTION
Masking
NONE
Enrollment
10
The clinical tool is a combination of home spirometry measurements and a patient survey measuring patient reported outcomes including the Cystic Fibrosis Respiratory Symptom Diary (CFRSD) and Chronic Respiratory Infection Symptom Score (CRISS©), with permission from the Seattle Quality of Life Group.
Cleveland Clinic
Cleveland, Ohio, United States
Lung Allocation Score (LAS)
Change in LAS value at the first clinic visit triggered by the clinical tool
Time frame: Through study completion, an average of 3-6 months (time spent on the lung transplant waiting list).
Time to transplant
Measured in days (time spent on the lung transplant waiting list)
Time frame: Through study completion, up to 1 year
Survival to transplant
Binary outcome measure to indicate if individual survived to transplant
Time frame: Through study completion, up to 1 year
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