Patient-Reported Outcome Measures in Cystic Fibrosis: Protocol for a Systematic Review.

ABSTRACT:

Background

Patients with cystic fibrosis (CF) can struggle with burdensome symptoms and treatment regimens that negatively affect every aspect of their life. As physiological parameters can fail to capture these complications, the assessment of health-related quality of life (HRQOL) has gained prominence. HRQOL can be measured using standardized patient questionnaires called patient-reported outcome measures (PROMs). The Australian Cystic Fibrosis Data Registry (ACFDR) collects clinical data on adult and pediatric patients with CF. The incorporation of PROMs into the ACFDR would enable monitoring of HRQOL trends, benchmarking of HRQOL outcomes, and support of HRQOL research in CF.

Objective

Prior to incorporation of a PROM in the ACFDR, this systematic review was planned to

SUBMITTER: Ratnayake I 

PROVIDER: S-EPMC7240448 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature