Khaled Al-Shair talks about Quality of Life assessment for aspergillosis

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Khaled Al-shair talks to the Aspergillus Patients Support meeting on his work analysing the Quality of Life data collected by the National Aspergillosis Centre, Manchester, UK

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Khaled Al-Shair talks about Quality of Life assessment for aspergillosis

  1. 1. LED BY GRAHAM ATHERTON SUPPORTED BY GEORGINA POWELL, MARIE KIRWAN & DEBBIE KENNEDY NAC CENTRE MANAGER CHRIS HARRIS QUALITY OF LIFE STUDY BY KHALED AL-SHAIR NATIONAL ASPERGILLOSIS CENTRE UHSM MANCHESTER Support Meeting for Aspergillosis Patients Fungal Research Trust
  2. 2. National Aspergillosis Centre Manchester Dr Khaled Al-shair MD PhD
  3. 3. During this meeting we aim to discuss : <ul><li>What is chronic pulmonary aspergillosis (CPA) ? </li></ul><ul><li>What is aspergillus? </li></ul><ul><li>How important to have regular and frequent assessment? </li></ul><ul><li>How the disease is regularly monitored? </li></ul><ul><li>Is there a standardized measure to assess these most frequent symptoms of the disease, its burden on physical, social, cognitive and psychological aspects of life? </li></ul><ul><li>What this questionnaire stands for? </li></ul><ul><li>What are the components of this questionnaire? </li></ul><ul><li>Is it valid and standardized? </li></ul><ul><li>Why I should fill the questionnaire every three months? </li></ul>
  4. 4. What is chronic pulmonary aspergillosis (CPA) ?
  5. 5. <ul><li>CPA is defined by the combination of at least one pulmonary cavity on thoracic imaging, with or without an aspergilloma, </li></ul><ul><li>Together with symptoms (usually weight loss, fatigue, cough, haemoptysis and breathlessness) for >3 months, </li></ul><ul><li>And serology (positive Aspergillus precipitating IgG antibody in blood) or cultures or histology implicating Aspergillus spp. </li></ul>
  6. 6. What is aspergillus?
  7. 7. <ul><li>is a fungus whose spores are present in the air we breathe, but does not normally cause illness. </li></ul><ul><li>However an individual with a weakened immune status or with multiple underlying diseases including prior tuberculosis, non-tuberculous mycobacterial infection, chronic obstructive pulmonary disease (COPD), sarcoidosis and allergic bronchopulmonary aspergillosis may be susceptible to aspergillus infection. </li></ul>
  8. 8. How important to have regular and frequent assessment?
  9. 9. <ul><li>The disease is quite progressive if left with out treatment and monitoring, </li></ul><ul><li>Further destruction in the lung tissue may happen, </li></ul><ul><li>More cavities or aspergilloma can develop, </li></ul><ul><li>More symptoms e.g., shortness of breath, fatigue, haemoptysis or loss of weight </li></ul>
  10. 10. How the disease is regularly monitored?
  11. 11. <ul><li>Radiology </li></ul><ul><li>Serology </li></ul><ul><li>Symptomatology </li></ul>
  12. 12. Is there a standardized measure to assess these most frequent symptoms of the disease, its burden on physical, social and psychological aspects of life?
  13. 13. <ul><li>The St George's Respiratory Questionnaire measures respiratory disease specific health status. </li></ul><ul><li>It is a standardized self-administered questionnaire developed by Jones and colleagues in London. </li></ul>
  14. 14. What are the components of this questionnaire?
  15. 15. <ul><li>The 50 items of the SGRQ - which cover 76 levels - are sub-scaled to three main aspects. </li></ul><ul><li>The first 8 items cover the respiratory symptoms and their frequency and severity, the Symptom domain . </li></ul><ul><li>The next 16 items concern limitation in activities due to shortness of breath, the Activity domain . </li></ul><ul><li>The last 26 items cover the consequent social and psychological implications of the respiratory diseases, the Impact domain . The scale covers 0-100 ; the higher the score, the worse the health status. </li></ul>
  16. 16. Is it a valid measure?
  17. 17. <ul><li>The questionnaire has been validated in COPD and asthma and also used in assessing health status in several other respiratory illnesses, such as idiopathic pulmonary fibrosis, bronchiectasis, cystic fibrosis and pulmonary tuberculosis. </li></ul><ul><li>We have recently validated the questionnaire in CPA field, </li></ul>
  18. 18. Symptom domain Activity domain Impact domain SGRQ Total core SGRQ score range 71.4 100 2.7 100 6 85.4 00 99.4 96.2 55.6 66.6 2.6 Alshair K et al, 2011
  19. 19. A: Patients with Band 1 of chronic pulmonary aspergillosis B: Patients with Band 2 and 3 of chronic pulmonary aspergillosis P=0.007 P=0.002 P=0.004 P=0.015 Can the SGRQ differentiate between different grades of CPA?
  20. 20. Why I should fill the questionnaire every three months?
  21. 21. <ul><li>Given the condition’s long-term nature and disabling symptoms, it is reasonable to anticipate an impact on physical, social and psychological aspects of patients’ health status, </li></ul><ul><li>Therefore, it is important to assess regularly all these aspects, </li></ul>
  22. 22. Thank you Questions?
  23. 23. Programme <ul><li>1pm Introduction </li></ul><ul><li>1:05 Quiz </li></ul><ul><li>2:00 Tea & Coffee </li></ul><ul><li>2:15 Marking </li></ul><ul><li>Discussions: </li></ul><ul><ul><li>Any Other Business </li></ul></ul><ul><li>3:00 Close </li></ul>
  24. 24. Local Support Groups <ul><ul><li>Local Support Groups – first one starting in Liverpool </li></ul></ul><ul><ul><ul><ul><li>Local support </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Local awareness (need to advertise locally) </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Encourages proactivity </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Information dissemination (leaflets etc.) </li></ul></ul></ul></ul><ul><ul><ul><ul><li>I could be available on PC to answer questions?? </li></ul></ul></ul></ul><ul><ul><ul><ul><li>I have 4 possible groups starting up – London, Southampton, Cornwall & Liverpool </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Want these all over UK & the world if possible! </li></ul></ul></ul></ul>
  25. 25. Student competitions <ul><li>Aim: Building awareness amongst younger people & parents </li></ul><ul><li>Art & music </li></ul><ul><li>Original compositions </li></ul><ul><li>£1200 prize (school & individual share) </li></ul><ul><li>Theme is ‘funky fungi’ </li></ul><ul><li>Starting this month in NW England, will spread from there. </li></ul>
  26. 26. How our immune system works <ul><li>Video 1 – the role of neutrophils </li></ul>
  27. 27. How our immune system works <ul><li>Video 2 –neutrophils move around looking for spores </li></ul>
  28. 28. How our immune system works <ul><li>Video 3 – Cartoon of neutrophils engulfing spores in mouse lungs and preparation for observation under the microscope </li></ul>
  29. 29. How our immune system works <ul><li>Video 4 – Mouse neutrophils engulfing spores in lung tissue </li></ul>
  30. 30. How our immune system works <ul><li>Video 5 – mouse neutrophils breaking up hyphae & transporting fragments to groups of neutrophils for destruction </li></ul>
  31. 31. AOB <ul><ul><li>Nurses study day – Georgina needs volunteers </li></ul></ul><ul><ul><li>Funguide Cook book – keep sending in recipes ! </li></ul></ul>
  32. 32. Thank You <ul><li>“ The best chance we have of beating this illness is to work together” </li></ul><ul><li>Living with it, Working with it, Treating it </li></ul>Fungal Research Trust

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