Doctors treating Chronic Pulmonary Aspergillosis patients have long used the St George Respiratory Quality of Life Questionnaire to collect information directly from patients on how they feel, information about symptoms, and ability to carry out certain activities. We know that this is a good guide to include in clinical decision-making as it includes the patient’s voice in the considerations. Unfortunately, the St Georges questionnaire is designed primarily for asthma and COPD patients and doesn’t mention some aspects of the symptoms of CPA for example, so we need a better quality-of-life questionnaire that is more dedicated to CPA.
Thankfully Dareen Marghlani at Imperial College London is setting out to develop a new quality of life questionnaire, especially for CPA. As part of a PhD project, she is inviting individuals with a diagnosis of Chronic Pulmonary Aspergillosis (CPA) to complete an anonymous online survey that takes approximately 15-20 minutes. The aim is to develop and validate a CPA-specific Health Related Quality-of-life questionnaire that can be used for clinical and research purposes.
If you are over the age of 18 and have access to a mobile phone or computer, then you’re eligible to participate!
Please click the link below, which will take you directly to the survey!
https://imperial.eu.qualtrics.com/jfe/form/SV_6mQQlS0E3Cb3v14
Many thanks for your help – this is really important for all CPA patients!
The more responses we get the better – we need at least 100.
Graham Atherton, National Aspergillosis Centre.