This tool can help you decide when you should see your doctor,
but don’t use it to diagnose yourself. Always leave that to your doctor. Taking part will take about 15-20 minutes.
For more information please see the participant information sheet. To find out more about this website click here.
EVALUATION OF A TOOL TO HELP PEOPLE DECIDE WHEN TO SEEK MEDICAL HELP
Julia Mueller, PhD Candidate at the University of Manchester
You are being invited to take part in a research study as part of a PhD degree at the University of Manchester.
Please take time to read the following information carefully and take time to decide whether you wish to take part.
What is the purpose of the study?
For certain symptoms that may be associated with more serious illnesses, such as lung cancer, it is especially important to
provide clear and helpful information to help people decide when they need to see a doctor about their symptoms.
We have therefore developed a tool to help people appraise their symptoms and to encourage people to see their GP (General Practitioner) if necessary.
The aim of this study is to find out how people use this tool and whether it is effective.
This tool is not designed to help you diagnose yourself. It will help you decide whether you need to see a GP about your symptoms.
If this tool does suggest that you should see a GP, this does not necessarily mean that you have lung cancer.
It just means it would be better to get your symptoms checked out.
Why have I been invited to take part in this study?
We are inviting anyone to participate who is above the age of 18,
lives in the UK and is experiencing any
of the symptoms listed below.
- A cough (whether dry and tickly or with phlegm)
- A long-standing cough that changes or gets worse
- Feeling out of breath
- Discomfort in the chest, shoulder or back
- Coughing up phlegm with a blood in it (even if just a few specks) / spitting blood
- Changes in your voice
- Unexplained weight loss or unexplained loss of appetite
- Swelling of face and neck
- Persistent / recurring chest infection
- Tiredness or lack of energy
- Changes in the appearance of fingers or fingernails (such as a softening of the nailbed, stronger than normal curving of the fingernails, or thickening of the fingertips so that the shape looks like an upside down spoon)
Do I have to take part?
No, you do not have to take part in this study if you do not want to. It is up to you to decide whether or not to take part.
If you decide to take part you are still free to withdraw at any time without giving a reason.
What will taking part involve?
The study will take place online. If you decide to take part, you will first be asked a few basic questions about yourself.
You will then be guided through the tool, which will provide information on symptoms and risk factors.
In the end, you will receive advice on whether you should make an appointment to see your GP. Finally, you will be asked to fill in a questionnaire.
Taking part in this study will take approximately 15-20 minutes. You will not be able to save the questionnaire and return to it at a later time so you will need to complete it in one go.
If you are willing to be contacted for some follow-up questions about three weeks after taking part in the study, we will send you an email with a link for a brief questionnaire (this will take 2-3 minutes to complete).
If we do not hear back from you, we will send you one reminder. After that we will not contact you again. Participating in the follow-up is optional; you can still do the main study even if you do not wish to be contacted afterwards.
What are the possible disadvantages and risks of taking part?
It is not our aim to ask any questions or provide any information that might be upsetting or stressful to you.
If there are any questions you do not wish to answer or you feel you want to withdraw from the study at any point,
that is absolutely fine. If you feel distressed or worried after taking part in this study, it will most likely be best if you contact your GP and speak to your GP about your concerns.
If you would like further support or advice, you can also call MacMillan Cancer support for free on 0808 808 00 00.
What are the possible benefits of taking part?
We cannot promise the research will help you but you may find the information
provided here useful in deciding whether you need to see a GP about your symptoms, or whether you should encourage someone else to see a GP.
How is confidentiality maintained?
All data will be stored securely at the University of Manchester.
Any information collected about you during this study will be kept strictly confidential.
Data will be made anonymous, so your name will not be included.
If you provide your email address for the follow-up questionnaire, this will be stored in a separate database from the remaining data, on a secure server.
All data will be stored in an encrypted format so they can only be accessed with the correct password, to ensure only the research team can access the data.
After the study is completed, the dataset will be fully anonymised and any information that could make participants identifiable will be removed. The anonymised dataset will then be stored in a
publically accessible repository, according to data management policy of the Medical Research Council.
Data from the study will be kept for a minimum of 10 years after the date of any publication which is based upon it, to follow recommended good practice guidelines
for research. Study data and material may be looked at by individuals from the University of Manchester or from regulatory authorities,
for monitoring and auditing purposes, and this may well include access to personal information.
What will happen if I do not want to carry on with the study?
You can withdraw from the study at any time without giving a reason.
No further data will be collected from the moment you withdraw.
What if I want to complain?
If there is a problem, you may contact me (Julia) in the first instance or you can contact my supervisor Professor Chris Todd.
If there are any issues regarding this research that you would prefer not to discuss with me or my supervisor,
please contact the Research Practice and Governance Co-ordinator by either writing to 'The Research Practice and Governance Co-ordinator,
Research Office, Christie Building, The University of Manchester, Oxford Road, Manchester M13 9PL', by emailing: firstname.lastname@example.org,
or by telephoning 0161 275 7583 or 275 8093.
What will happen to the results of the study?
The data obtained will be analysed and written up as part of a PhD thesis.
The data will also be summarised in the form of research articles which will be published in a scientific journal.
Who is funding the research?
This research is funded by the Medical Research Council.
Who has reviewed the study?
Ethical approval for this study was granted by the Univerity of Manchester Research Ethics Committee (Ref #15353).
Whom can I contact for further information?
If you have any questions or require any additional information about this research project please do not hesitate
to contact me or my supervisor at:
Julia Mueller (chief investigator)
School of Computer Science,
LF1 Kilburn Building,
Tel: 0161 275 7821
Professor Chris Todd (supervisor)
Professor of Primary Care and Community Health
The School of Nursing, Midwifery and Social Work
University of Manchester
Jean McFarlane Building
Tel: 0161 306 7865
If you would like some additional information on lung cancer you can contact:
Macmillan Cancer support
Macmillan Cancer Support
89 Albert Embankment,
Phone: 0808 808 00 00
The Roy Castle Lung Cancer Foundation
The Roy Castle Centre (Head Office)
Wavertree Technology Park Liverpool,
Phone: 0333 323 7200