Aspergillus for Patients (www.aspergillus.org.uk/patients)

Abstract number: P2240

Atherton G., Bartholomew J., Giles P., Denning D.

Objectives: Information and support on Aspergillus illnesses is difficult to obtain for patients and carers. The Aspergillus for Patients section of the Aspergillus website was intended to make information on Aspergillus and Aspergillosis easy to access and understand for the layperson.

Methods: A short history review of the current Aspergillus for Patients website, including site statistics.

Results: We set up the first Aspergillus support group as a simple mailing list to coordinate questions and answers from patients but the group rapidly outgrew that arrangement and we moved it to a fully featured webpage/email discussion group in January 2003. The Aspergillus Support group (www.yahoo.co.uk/AspergillusSupport/) now has 527 members and still growing steadily.

A lot of information was requested repeatedly so a small website (The Patients website) was set up to provide consistent answers to the common questions. These pages remain one of the most popular sections of the Aspergillus website though some of its functions have been taken over by the Aspergillus Trust's website (www.aspergillustrust.org) with which it remains closely allied – the combined viewing figures are 25,000 page requests per month.

The Aspergillus Trust charity arose directly from the Yahoo Support group and is governed by some members of that group in close collaboration with the Aspergillus website.

The Patients website collected information direct from patients to try to get a better idea of the range of illnesses people were seeking information on. 1,232 patients filled out the form over the next year or two and the information gathered broke down to the following numbers; Invasive aspergillosis – 249, CPA – 142, Aspergilloma – 134, ABPA – 359, Allergies – 317, Sinusitis – 355, SBS (Sick building syndrome) – 167, Other – 292. Substantial numbers of rare illnesses e.g. ABPA and aspergilloma are represented well in this group, indicating we are reaching our target audience effectively.

Conclusions: The Support groups and Aspergillus for Patients website section is a major resource for information for the layperson on these illnesses.