PATIENT REPORTED OUTCOMES
Bronchiectasis is a chronic, progressive lung condition which has significant effects on quality of life (QoL), including physical and mental health. As such, an important area of bronchiectasis research focuses on gaining insights into the patient experience, particularly with respect to their health-related QoL and overall wellbeing.
Patient-reported outcomes (PROs) are health-related information that comes directly from patients and are used to assess the impact of disease on the patients health and wellbeing by measuring changes in symptoms, daily functioning, and overall wellbeing.
Patient Reported Outcome Measures (PROMs) represent the tools used to collect data relating to PROs i.e., how PROs are measured. PROs are frequently measured using questionnaires and can be generic (i.e., assess PROs broadly by asking questions relating to generic health concepts and can therefore be used in many disease settings) or disease-specific (i.e., assess PROs in the context of a specific disease by tailoring questions to address key aspects unique to that disease).
Several PROMs are currently used within bronchiectasis, including:
Please note: Some PROMs require a license for use in clinical research. To find out more, please see ‘Licensing for PROMs’.
Quality of Life Questionnaires
Health Status Assessment Tools
In recent years, PROMs have been adopted as outcome measures in clinical trials to determine the impact of a treatment on patients health and wellbeing. However, the psychometric properties of health-related QoL questionnaires are uncertain, and it is difficult to justify the use of one questionnaire over another. In turn, there is a need for validation of disease-specific PROMs within the bronchiectasis population to capture meaningful, disease-specific outcomes related to the condition.
As such, EMBARC implements PROMs into research projects, including clinical trials, the EMBARC registry and EMBARC-BRIDGE, to better understand the patient experience, and actively conducts research to improve, validate and develop PROMs for use in bronchiectasis research.
