The National Aspergillosis Centre Support group in Facebook has 2700 members as of June 2023, and contains people who have a variety of types of aspergillosis. Most will have Allergic Bronchopulmonary Aspergillosis (ABPA), some will have Chronic Pulmonary Aspergillosis (CPA) and a few will have Severe Asthma with Fungal Sensitivity (SAFS) definitions of which can be found elsewhere on this website.
Facebook allows us to run occasional polls to try to learn from this large population of people, and we present here some of what we have learned:
What impact does the work of the National Aspergillosis Centre CARES Team (NAC CARES) have on our patient’s lives?
For this poll, we chose to ask those people who use the NAC CARES support resources (ie, aspergillosis.org, Weekly meetings, Monthly meetings, Facebook support groups, and Telegram information groups) to think about any change to their health before and after they found those resources. We will repeat this exercise periodically to check for any changes over time as we make changes to try to improve patient care.
15th February 2023
It is immediately clear from this Poll that most people who responded were very positive about using NAC CARES support. 57/59 (97%) responded positively. This is likely a biased result and few people who don’t find these resources useful would be using them to vote!
The principal benefits to patients of using NAC CARES support seem to be:
- Understand aspergillosis better
- Feel more in control
- Less anxious
- Community support
- Better working relationships with doctors
- Manage QoL better
- Less alone
For a few some part of NAC CARES support made them feel worse (2/59 (3%)), and we are aware that not everyone wants to know more about their medical condition, perhaps preferring to let their medical team manage it without involving themselves? If true, that is an important finding and we need to respect that viewpoint, but also try to identify how to better engage these people in actively managing their own healthcare as it is established that this improves outcomes for the patient https://www.patients-association.org.uk/self-management.