UK Lyme Disease Priority Setting Partnership - Survey
(please also read the accompanying FAQs)
Prioritising diagnosis and treatment uncertainties in Lyme disease
Clinicians
Clinicians are requested to identify uncertainties which are immediately relevant to diagnosing and treating a patient with Lyme disease. They are asked to recall and share any issues which they have encountered during discussions or consultations with patients and those caring for them.
It is worth noting that this is not the same as recalling an area where research is lacking. What the JLA process is looking for is the uncertainty during a consultation where the doctor thinks "How am I going to diagnose/treat this? I'm not sure."
Patients and carers
Patients and carers are requested to think of all aspects of their care and the course of their disease from diagnosis through treatment both for the disease and to alleviate symptoms. They are asked to include only questions based on their own experience, rather than the experience of others: this ensures that we do not inadvertently include questions based on hearsay.
What questions about the diagnosis or treatment for Lyme disease would you like to see answered by research? You can submit as many or as few as you like.
1.
2.
3.
4.
5.
If you wish to submit more, please add them on a separate page.
If you need help phrasing questions, email to schedule a telephone conversation.
Please proceed to the next page
Consent
As part of this research process, we hope to publish a summary of all the uncertainties identified by the participants of the survey and submit them to the UK Database of Uncertainties about the Effects of Treatments (UK DUETs – www.library.nhs.uk/duets). Strict anonymity will be kept and your name and the name of your organisation will NOT be published in association with the results. Do we have your permission to use your entries (without your name) in this way?
Yes
No
Signed ______
Date ______
Contact details
You do not have to give us your name and email address. However, if you do so we will be able to contact you if we want to ask you for more details about the information that you send to us or if we feel that we can help with any uncertainty that you have identified.
Name ______
Email or postal address ______
______
Preferred phone ______
Please tick if you would like to be kept informed of the progress of this study.
Please return this form to Lyme Disease Survey, James Lind Alliance, Summertown Pavilion, Middle Way, Oxford OX2 7LG. Or email .
Forms must be received by September 30th 2011
Thank you very much for participating.
We would like to gather some brief information about you, so please proceed to the next page.
About you
It would be helpful to know something about you. If you prefer not to, then just leave any section blank.
Other details
Patients & carers, please proceed to the next page
4