Research into quality of life assessment & clinical relevance run at the National Aspergillosis Centre, Manchester, UK by Dr Graham Atherton

1. Led by Graham Atherton Supported by Georgina Powell, Marie Kirwan & Debbie Kennedy NAC Centre Manager Chris Harris Talks given Graham Atherton IT Support, NAC National aspergillosis centre UHSM Manchester Support Meeting for Aspergillosis Patients Fungal Research Trust

2. Quality of Life Assessment & Clinical Relevance A Research Project run at the National Aspergillosis Centre

3. Quality of Life Assessment A device to measure various parts of a patients wellbeing Reliable Tested Input by patients

4. What information do we get? Symptoms – how you are feeling on the day of filling out the questionnaire Impact – how your illness is effecting your life e.g. employment, effects on public life, medication, what it stops you doing Activity – how you illness effects your mobility and ability to go about your normal daily life

5. Symptoms These are generally about your breathing, coughing, chest trouble as these are relevant to respiratory illness Attempt to measure the severity of symptoms – we get a number calculated by computer Can be influenced by colds, flu, side effects – we can spot this and exclude.

6. Why bother? A good way for all patients to assess themselves (in private) A good way for us to get useful information out of patient (standard questions, validated by research) A broad range of questions – might cover something not mentioned when talking to the doctor, or might prompt questions

7. What is the use of all this? We have to get the patient’s input when judging how our service is performing (DoH requirement) If we can show our QOL results relate to clinical judgement then we might be able to use QOL results in the clinic to flag up changes in how the patients is doing More thorough, less likely to miss something Saves time for everyone

8. Research Does the QOL score reflect clinical judgement? Can we use QOL result to indicate improvements or problems? Complete QOL prior to seeing doctor Write results into notes Doctor reads & interprets result, can immediately start working ‘in the right direction’

9. Happy Patient = Happy Doctor.

10. Prove concept Last summer we analysed QOL data for all patients against clinical measurements eg CRP levels We analysed all data to see if changes in QOL scores correlated with changes in clinical assessments

11. Results Do QOL scores reflect severity of initial illness? We found that Total scores and Impact scores correlated well with some clinical test results e.g. measurements of infection

12. Results Of those patients judged to have improved 14 (48%) agreed with clinical judgement 6 (21%) disagreed with clinical judgement 9 (31%) suggested no change

13. Results Of those patients judged to have got worse 2 (17%) agreed with clinical judgment 3 (25%) disagreed with clinical judgment 7 (58%) suggested no change

14. Conclusions QOL can identify 50% of improvers but only 17% of those patients who got worse Numbers low More work needed!

15. What now? Look at every patient (more numbers) and get doctor & nurse assessment every time they take the QOL Include information on which drug is in use & side effects

17. Preliminary conclusions We can spot 75% of improvers We can correctly identify all (100%) of stable patients We can spot 80% of those getting worse Only 8% were incorrectly identified (QOL suggests slightly worse/better where clinician suggest the opposite happened)

18. Thank you for filling in all those questionnaires!

19. Success?

20. More to do Much more data to analyse – might get better/worse! What about the 8%??? Adjusting parameters might get rid of some Most correlate with people who are having side effects

21. Future You may be asked to complete your QOL before you see your doctor at clinic But once you get in the meeting may be concluded more quickly Better quality of treatment Shorter queues See more people (???)

22. ABPA & SAFS Project The aims Overall the goal is find out how common are ABPA and SAFS Find out if systematic screening will identify new patients efficiently rather than waiting for cases to be reported

23. ABPA & SAFS Project Find out how many people have ABPA in adults with asthma in the UK Find out how many people have SAFS in adults with asthma in the UK Work out if it will be better for the NHS to identify & treat these patients proactively rather than wait.

24. ABPA & SAFS Project Phase 1 The study will be a prospective, cross-sectional survey in primary care of adult asthmatics (age 16 and above). The primary research tools will be: The GP record of attendances, prescriptions for and admissions for asthma Asthma medication FEV1 Skin tests for fungi and control allergens Total IgE and fungal specific IgE tests Patient’s employment status and possibility of returning to work, if not working.

25. ABPA & SAFS Project Phase 2 How much does missed diagnosis versus antifungal therapy and its monitoring cost the NHS. Assess whether a screening program would be appropriate, and its frequency. If treated successfully can we save money by getting people back to work, versus costs of identifying patients with SAFS and ABPA.

26. ABPA & SAFS Project The patient benefits of finding patients with ABPA and SAFS will be: Greater detection rates of ABPA and SAFS, which respond to antifungal therapy Reduced corticosteroid use Reduced antibiotic usage Better quality of life, for those treated, having been diagnosed.

27. ABPA & SAFS Project Patient opinions – this is what we thought of – but you might be able to come up with something else What other information could we gather? Getting you back into employment/volunteer work Other improvements to your quality of life Economic impacts of your illness What other questions could we ask? Travel? Benefit issues? Impact on your carer & family?

28. ABPA & SAFS Project Send thoughts to me - take my card Email/phone/letter Discuss now! Thank You for your help