Aspergillosis Patient s Meeting

1. Aspergillosis Patient’s Meeting Open to all aspergillosis patients & carers (not just NAC patients) Run by the National Aspergillosis Centre (NAC) www.nationalaspergillosiscentre.org Supported by the Fungal Research Trust www.fungalresearchtrust.org

2. Scope Local: Currently attend clinic here at UHSM – good access National: Some patients travel from all over the UK to attend the National Aspergillosis Centre – adjust appointment time if possible? International: Members of the online Aspergillus Support group come from all over the world (mainly USA & Australia but also Europe) (http://uk.groups.yahoo.com/group/AspergillusSupport/) - Skype/webcam/recordings of talks

3. National Aspergillosis Centre Long standing clinic (mainly North West England) to treat aspergillosis continues – includes ABPA, Invasive Aspergillosis Specialist national centre to treat Chronic Pulmonary Aspergillosis (CPA) set up Started in April 2009 Has own funding from National Commissioning Group (NHS) Diagnostics centre Research centre (including FRT funded) Training centre

4. Fungal Research Trust UK Charity Started in 1991 Spent £405,000 in 2009 (£330 000 to Univ of Manchester Team) Aims To promote research in all aspects of mycology, mycotic diseases, fungal toxicology and microbial disease (of all living things) and to publish the useful results thereof. To advance education particularly among physicians and scientists about mycology, mycotic diseases, fungal toxicology and microbial diseases in general. To generally support basic research into fungi and fungal disease, train scientists into mycology and related disciplines. To provide information to patients suffering from fungal diseases, in particular aspergillosis.

5. Fungal Research Trust Patient support Aspergillosis for Patients website http://www.aspergillus.org.uk/newpatients Aspergillus Support group (online) http://uk.groups.yahoo.com/group/AspergillusSupport/ Information materials for clinic Aspergillosis for Patients in Rome 2010 – made available on video Patients meeting (i.e. this meeting) Professional support Aspergillus Website: Diagnosis & Treatment, Case histories http://www.aspergillus.org.uk Research grants (85% to University of Manchester team) Training

6. Rome 2010

7. Fungal Research Trust Research achievements – 15 peer reviewed papers in 2008 Papers of note involving Aspergillus Finding important genetic variations in a group of cell attachment proteins for fungi and bacteria, called Toll-like receptors' that differ in patients with different Aspergillus diseases Showing the extreme variation in blood levels of voriconazole (the powerful first-line treatment of lifethreatening aspergillosis) in children, requiring dosage adjustment Major findings related to the remarkable differences and similarities in genomes and genes between different members of the Aspergillus genus Improvements in standardisation of susceptibility for Candida and filamentous fungi, by supporting the work of the European Committee on Antifungal Susceptibility Testing Contributing to remarkable new findings in chronic mucocutaneous candidiasis showing that these patients have auto-antibodies against type 1 interferons, and this may be a useful diagnostic test and diagnostic criterion.

8. Purpose of these meetings Primary aim is to support patients: An opportunity for patients to meet and socialise with each other & medical staff Informal questions, suggestions, discussions New information: Short research summaries, meet the researchers, news Secondary aim is to support the service given by NAC Suggestions for improvement of service from NAC Feedback loop Set up patients groups to assist with research proposals

9. Research – How do you feel? New centre needs to measure how effective it is – required to by funding body (NCG)

10. Quality of Life Assessment Medical assessment: carried out by doctors using clinical criteria (e.g. IgE levels) But how much better do YOU feel you are? How is your illness impacting on your life? Best person to answer that is you. Self assessment by patient Simple question ‘Describe your current Health’ QOL questionnaire(s)

11. Simple Question Very good¦Good¦Fair¦Poor¦Very poor Advantages Easy to ask & answer Quick to get answer Disadvantages What does it mean? How sensitive is the result over time?

12. QOL Questionnaires Ask a series of questions designed to assess several factors in your quality of life: impact, symptoms, pain, medication, emotional stress and so on Tested by extensive research Sensitive – can pick up small changes Get a score 1-100 Can compare scores over time

13. QOL first results 2 questionnaires used: St Georges Respiratory – tested for asthmatics etc. Short Form 36 – tested for wide range of illnesses For our purposes SF36 failed to show any correlation with assessments by clinical staff and lacked internal consistency – discarded St Georges showed good correlation and sensitivity to changes – continuing with this questionnaire

14. QOL - next May be able to shorten the number of questions Some evidence that it could act as a ‘flag’ to indicate significant changes that might need medical attention. QOL before seen by doctor Score given to doctor to refer to during consultation Doctor can refer to full score history on computer

15. QOL – end point Develop our own questionnaire dedicated to our patients which we have demonstrated provides a useful additional tool for the treatment of chronic pulmonary aspergillosis. Integrate that tool (and therefore integrate patients own quality of life assessments) into our treatment program Publish research paper!

16. Back in the room Any questions? Any suggestions for a discussion? Read leaflets – suggest changes or new leaflets Record points to be raised – leave notes Break up into groups – tea Marie, Debbie, Georgina (specialist nurses) Graham (Aspergillus Website) Chris (NAC Manager) admin@aspergillus.org.uk ‘Patients meeting’ in subject