Aspergillosis Patients Support Meeting February 2011 - Graham Atherton

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

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

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

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

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.

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

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

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’

Happy Patient = Happy Doctor.

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

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

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

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

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

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

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)

Thank you for filling in all those questionnaires!

Success?

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

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 (???)

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

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.

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.

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.

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.

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?

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

Aspergillosis Patients Support Meeting February 2011 - Graham Atherton

by Graham Atherton on Aug 01, 2011

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