Support Meeting for Aspergillosis Patients LED BY GRAHAM ATHERTON SUPPORTED BY GEORGINA POWELL, DEBBIE KENNEDY & DEB HAWKER NAC CENTRE MANAGER CHRIS HARRIS ORAL ANTIFUNGAL: DEBBIE KENNEDY NATIONAL ASPERGILLOSIS CENTRE UHSM MANCHESTERFungal Research Trust
Programme 1.30 Debbie Kennedy Oral antifungals and TDM 2.00 Khaled Al-Shair- 4 things we have learned from QOL 2.20 Break 2.30 Phil Langridge- Correct use of inhalers 2.50 Graham Atherton Short story on some recent research/discuss social support via phone 3.10 Q & A
Monitoring Drug Levels 25th January 2013 NAC Patient’s Meeting
Drugs that are used to treat Aspergillosis– There are 3 oral drugs that are used to treat aspergillosis– Itraconazole– Voriconazole– Posaconazole– Known as azoles
Why monitor drug levels?– It is important that the concentration of the drug in the body is kept within a threshold for it to suppress the fungus– It may be effective below the lower expected level but this runs the risk of resistance– Above the higher level may mean the patient experiences side effects or increased side effects
Drug Management Itraconazole is available as 100 mg pink and blue capsules with the brand name brand name Sporanox.® Always remember it is very important to take the Itraconazole capsules whole with food or an acidic drink, like coca-cola. Itraconazole is available as an oral liquid again with the brand name Sporanox® and comes in a 150ml bottle with a concentration of 10mg/mL. It is sugar free and is cherry flavoured. Always remember it is very important to take Itraconazole oral liquid on an empty stomach.
Drug Management Voriconazole is available as 50mg or 200mg tablets with the brand name Vfend® should be taken at a dose of 200mg twice daily, 12 hours apart. Voriconazole, brand name Vfend® is also available as an orange flavoured oral liquid of 200mg/5mL. The amount of Voriconazole in your body is measured through a small blood test. This helps us to make sure you are on the right dose for you, that is, not too much or not too little.
Drug ManagementPosaconazole is available only as an oral liquid 200mg/mLNoxafil® and should be taken at a dose of 400mg twice daily,12 hours apart, with food.If patients cannot tolerate food it should be taken 200mg 4times daily.
Drug Management ~£109.20 ~£109.20 ~£4410.96 ~£4410.96 28 days 28 days 28 days 28 days ~£3000.00 ~£3000.00 28 days 28 days
Therapeutic Drug MonitoringTDM• Itraconazole Levels – random level• Voriconazole Levels – trough level• Posaconazole Levels – record time of last doseAim is to keep blood concentration at a therapeutic level• Too low can lead to resistance• Too high can result in increased side effects
Side effects of Azoles Itraconazole • GI Intolerance • Hepatitis • Peripheral neuropathy • Fluid retention • Rash • Hypertension • Cardiac Failure • Headache • Tremor • Insomnia
Side effects of Azoles Voriconazole • Photosensitivity – even trivial light Visual Disturbance • Peripheral neuropathy • Poor concentration • Abnormal thinking • Headache • Dry painful lips • Abnormal LFTs • Dry eyes • Tightening feeling of the skin
Side effects of Azoles Posaconazole • GI Intolerance • Neuropathy • Rash • Headache • Sleep disturbance • Anorexia • Abnormal LFTs • Arrhythmias & palpitations
TDM as part of Long Term ManagementBlood tests Aspergillus precipitins and titre Inflammatory markers, CRP, Plasma Viscosity Total IgE Aspergillus specific IgE (RAST) Microscopy Sputum – sensitivities Asp PCR Radiology X-ray CT scan History MRC – Medical Research Council Dyspnoea Score
Measuring health status inChronic pulmonary aspergillosis(CPA): lessons we have learned Dr Khaled Al-shair MD PhD National Aspergillosis CentreSouth Manchester University Hospital
A year ago, we discussed:1. What is chronic pulmonary aspergillosis (CPA)?2. What is aspergillus?3. 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?4. What this questionnaire stands for?5. What are the components of this questionnaire?6. Is it valid and standardized?7. Why I should fill the questionnaire every three months?
How important to have regular and frequent assessment?
• The disease is slowly progressive if left with outtreatment and monitoring,• Further destruction to the lung tissue may happen,• More cavities or aspergilloma may develop,• More symptoms e.g., shortness of breath, fatigue,haemoptysis or loss of weight
The 50 items of the SGRQ - which cover 76 levels - are sub-scaled to three main aspects. The first 8 items cover the respiratory symptoms and their frequency and severity, the Symptom domain. The next 16 items concern limitation in activities due to shortness of breath, the Activity domain. 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.
I am really keen to use my medication,does that help me, when I may seeimprovement?
Improved Stable Deterioratedn= 107 97 44 n= 37 31 14 n= 27 28 16 n= 41 36 13 All patients Itraconazole Voriconazole Posaconazole Response after treatment for 3, 6 or 12 months on either itraconazole, voriconazole or posaconazole
After treatment:- 47-50% gained substantial health improvementwith a reduction of score of 14 at both 6 and 12months, - 32% deteriorated with a rise of 11 and 14 scores after 6and 12 months of treatment and observation respectively,- 21% were not much different (stable).
n= 107 97 44 n= 37 31 14 n= 27 28 16 n= 41 36 13All patients Itraconazole Voriconazole Posaconazole Response after treatment for 3, 6 or 12 months on either itraconazole, voriconazole or posaconazole Improved Stable Deteriorated
I’ve been told that my case is poor/verypoor, ANY HOPE to get better?
Patients gained therapeutic benefit irrespective of theirillness severity where >50% of those who had “poor”and “very poor” at baseline improved with reduction of≥4 scores after 6 months of treatment.Using much wider scale, we found that at least 50% of“poor/very poor” health status category at baselineimproved significantly to “fair” or “good/very good”categories.
Good/Very good Fair Poor/Very poor n= 18 18 51 51 44 38At baseline Good/Very good Fair Poor/Very poorChanges in health status at 6 and 12 months from baseline
How To Use Your Inhaler Reyenna SheehanSpecialist Aspergillosis Physiotherapist 25/1/13
Inhalers• Device used to deliver medication to the lungs in an aerosol form
Metered-Dose Inhaler (MDI)• Pressurised aerosol inhaler• How to use:• Remove Cap• Shake canister• Place mouthpiece in mouth• Press Canister once to release a dose of drug• Breathe in• Hold breath 10 seconds• If another dose is needed take inhaler out of mouth, shake and repeat above steps
Using MDI with Spacer• Remove cap and insert inhaler into aerochamber/spacer• Place mouthpiece in mouth and take slow breath in• Whistles if breathe too quickly• Can be used with or without breath hold
Easi-breathe• Breath Activated• Shake inhaler and open cap• Hold upright and breathe out gently• Place mouthpiece in mouth• Breathe in slowly and deeply• Hold for 10 seconds and remove inhaler from mouth
Accuhaler• Dry powder inhaler• Open lid fully• Slide lever down until it clicks to load inhaler• Breathe out gently• Place mouthpiece in mouth• Take deep breathe in• Hold Breath 10 seconds and remove mouthpiece
Turbohaler• Dry powder inhaler• Remove lid• Hold upright and twist forwards and backwards (should hear a click)• Breathe out gently• Place inhaler in mouth and take deep breathe in
HandiHaler• Open cap• Open mouthpiece• Remove capsule from blister and place in chamber• Close mouthpiece until it clicks• Press green button in once and release• Breathe out gently away from mouthpiece• Put mouthpiece between teeth without biting and close lips to form good seal• Breathe in slowly and deeply, so capsule vibrates• Continue to breathe in as long as comfortable• While holding breath, remove inhaler from mouth• Breathe out gently away from mouthpiece• Put mouthpiece back between teeth without biting and close lips to form good seal• Breathe in slowly and deeply again, so capsule vibrates• Continue to breathe in as long as comfortable• While holding breath, remove inhaler from mouth• Breathe out gently away from mouthpiece• Open mouthpiece and remove used capsule• Close mouthpiece and cap
Final Thought….• Remember intended purpose!• Please use medication as advised and prescribed by your medical practitioner
Social SupportOnline support groups – support around 1250 peopleBut 49% of our patients are not online – reasonable tosuggest that this is representative?Offline support – How?
Offline SupportThis meeting! About 12-16 people per month – estimate 50 people per year How many here access support online? What proportion of the ‘offline people’ are we reaching?
Offline supportLocal support groups 7 groups in the UK (all in England) 3-6 people per group = a maximum of 40 people Some of these are new people (not our patients) Many of these are offline – approx 50%
Offline Support – How?Still left with people who cannot reach support groups – mobility problems, access to IT, socially awkwardEveryone gets newsletter in clinic – so all of OUR patients are reachableEveryone has a phone!
New Year Honours ListA extraordinary man was honoured for organising & providing a phone support service to a large group of patients
Volunteer Phone Support - discussionSuggestionsWe ask for volunteers who are already ‘expertpatients’ – e.g. come to this meeting, use onlinesupport, experiencedVolunteers man a phone line for a short time eachweekClinic puts people in touch – i.e. volunteers phonenumber is not publicisedDoctors/nurses will suggest people who needsupport and who cannot use current support
What would phone support consist of?Social contact – informalEmpathyAn intermediary for information
Your opinionsIs this a workable idea?What would be a reasonable time to ask someone to volunteer?How frequently?Do you think training would be needed?Should we try to protect personal home numbers somehow?
VoteIs this a good idea?Is this the right way to go about it?What changes should we make before starting?Any volunteers – help us run service and help us decide what to do?
Thank You“The best chance we have of beating this illness is to work together” Living with it, Working with it, Treating it Fungal Research Trust