Research project - patients with COPD invited to participate - see information below for further details.

The BLF have agreed to help researchers at the University of Oxford recruit people to take part in a research project running between April 2016 and May 2017.

What’s this study about?

The researchers have developed a questionnaire to investigate the effects of health on the way people participate in everyday activities and their level of independence. They are currently looking for participants to complete the questionnaire independently using their PC, laptop, tablet computer or smart phone.

What will participants be asked to do?

Participants will be asked to provide their email address in order to receive a link to the questionnaire. Participants will be asked to complete the online questionnaire in their own time on two occasions, 6 months apart. It is likely to take approximately 10 to 20 minutes.

Who can take part?

This research project is open to UK-resident adults (aged 18 and over) with COPD who use a computer or electronic device to access email and the internet. The research is also including people with other conditions, including Parkinson’s disease, motor neurone disease and multiple sclerosis.

Who is conducting the research?

Dr David Morley is leading the project. Other members of the research team are Professor Crispin Jenkinson, Dr Laura Kelly, Mrs Sarah Dummett, Dr Jill Dawson and Professor Ray Fitzpatrick

Who has reviewed this study?

The project has been reviewed by and received clearance through the University of Oxford Central Research Ethics Committee (Ref: MS-IDREC- R44281/RE001.).

 

IF YOU WANT TO TAKE PART, PLEASE SEE THE INFORMATION BELOW: 

The Oxford Participation & Activities Questionnaire (Ox-PAQ): REQUEST FOR PARTICIPANTS TO TAKE PART IN AN ONLINE SURVEY

Researchers in the Health Services Research Unit (HSRU) at the University of Oxford are looking for people to complete a short e-based survey. Participants will be asked to complete a brief questionnaire related to participation and activity in their daily life, using their PC, laptop, tablet computer or smart phone.

The British Lung Foundation (BLF), Motor Neurone Disease (MND) Association, Multiple Sclerosis (MS) Society and Parkinson’s UK have agreed to share information about the survey with their members. We are asking approximately 100 people with COPD, 100 people with MND, 100 people with MS and 100 people with Parkinson’s disease (PD) to take part. If having read this information about the survey you wish to participate please follow the link given at the end of this information sheet.

What is the purpose of the study?

The Oxford Participation and Activities Questionnaire (Ox-PAQ) has been developed to measure the effects of health on participation, activities and independence in daily life. An electronic form of the questionnaire has also been developed, and an online survey is being conducted to test the measure with different groups of people.

Why have I been asked to take part in the study?

You are being approached because you are a member of one of the organisations helping to promote the online survey. We are asking approximately 400 English-speaking adults (aged 18 and over) living in the UK, with one of the conditions mentioned above, who use the internet, to complete the questionnaire using their PC, laptop, tablet computer or smart phone.

Do I have to take part?

You do not have to take part in the online survey. Participation is voluntary and it is entirely up to you to choose whether or not to take part. You can contact the research team to ask any questions you have before deciding. You can choose not to take part and are free to withdraw at any point, without giving a reason. There is no penalty associated with withdrawing from the survey.

What will taking part involve?

You will be asked to complete the online questionnaire on two occasions, 6 months apart. To take part in the online survey, click on the link at the end of this information sheet to provide the research team with your email address. You will be sent an email containing a link to access the online questionnaire. Your email address will be retained in order to contact you again in 6 months’ time. By providing your email address you agree that it will be retained by the research team for contact in 6 months, after which it will be destroyed. Instructions are given at the start of the questionnaire and it is likely to take you 10-20 minutes to answer the 30 questions. You will answer questions by clicking on the appropriate response button. Two or three additional questions will be included in the second questionnaire that you will complete 6 months later. A link for this will be emailed to you automatically 6 months after you complete the first questionnaire. This is to help us understand whether or not the questionnaire is able to pick up any apparent changes in your daily activities and participation.

What happens to the research data provided?

If you take part, all the information you give will be anonymised and will be treated in complete confidence. Data will be collected using secure survey software and stored in a secure, password protected file and will only be used as part of this study. It will only be accessed by members of the research team and will be destroyed after a period of 10 years.

What are the benefits of taking part?

By taking part you will be helping the researchers to determine whether or not the Ox-PAQ can assess changes in people’s levels of activity and participation.

What are the possible disadvantages or risks of taking part?

We have tried to ensure the questionnaire is as simple as possible so you do not spend more time than necessary completing it. Completing the survey is likely to take around 10 to 20 minutes of your time. There are no risks involved. However, if you feel that issues have been brought up that need to be addressed you should contact your GP or healthcare provider at the earliest possible moment, and in the first instance telephone NHS Direct on 111.

How do I raise concerns or make a complaint?

If you have a concern about any aspect of this project, please speak to the relevant researcher (Dr David Morley, telephone [phone]) who will do his best to answer your query. The researcher should acknowledge your concern within 10 working days and give you an indication of how he intends to deal with it. If you remain unhappy or wish to make a formal complaint, please contact the chair of the Research Ethics Committee at the University of Oxford (Chair, Medical Sciences Inter-Divisional Research Ethics Committee; Email: [e-mail]; Address: Research Services, University of Oxford, Wellington Square, Oxford OX1 2JD). The chair will seek to resolve the matter in a reasonably expeditious manner.

Who is organising and funding the project?

The project is co-funded by the European Brain Council and Actelion Pharmaceuticals. It will be organised from the Health Services Research Unit (HSRU), Nuffield Department of Population Health, University of Oxford. The members of the research team at the HSRU are Professor Crispin Jenkinson, Dr David Morley, Dr Laura Kelly, Sarah Dummett, Dr Jill Dawson and Professor Ray Fitzpatrick.

You will be able to find the results of this research online at ndph.ox.ac.uk/research/heal... in addition to them being published in academic journals. The project has been reviewed by and received clearance through the University of Oxford Central Research Ethics Committee (reference number

MS-IDREC- R44281/RE001).

If you wish to discuss this research, please email:

Sarah Dummett, Research Assistant or Dr David Morley, Senior Research Scientist: [e-mail]

TO TAKE PART, PLEASE CLICK ON THIS LINK oxforddph.eu.qualtrics.com/... AND PROVIDE YOUR EMAIL ADDRESS

[TyneandWear]

Sounds interesting. I have sent them my email address.

Thérèse

[Hidden]

Thankyou Ben .

[Hidden]

Here we go again. Aren't they interested in how those with bronchiectasis and other lung conditions manage their daily lives or don't they know that these conditions exist

[y_not in reply to Hidden]

I thought that they decided on a condition, obtained funding then did the research. Guess that some conditions won't fall inside of their remit. As I understand it, the research won't benefit us, we are too far gone, it benefits our children and theirs.

Don't think it's about interested or not, simply can they get the funding and research the condition.

  I certainly won't hold my breath (so to speak) waiting for a cure for COPD or any other lung condition!

[Hidden in reply to y_not]

hi y not. They aren't researching the condition but how people carry on their lives with it. They are also looking into different types of conditions. I am definitely not too far gone and like many with all kinds of different lung conditions have led and still lead a very active life. They just get focussed on COPD because there has been so much government emphasis on it. A comparisonbetweent how COPD sufferers, most of whom have been diagnosed and learned how to live with it in adulthood and bronchiectasis, which most people have had to live with all of their lives would make a very good comparison. across the spectrum of lung conditionsand might lead to ways to enhance the daily experience of sufferers Comparing COPD with MND MS and Parkinsons is, to my mind, comparing oranges with fish and screwdrivers. It is obvious that they have managed to get money from all of these conditions and have dreamt up a 'research project ' to fit the funding origins. This isn't aimed at you. I just get very cross at the waste of money involved in some of these 'vanity' research projects when as you said,we need far more money to research the conditions themselves.

[daveymac55 in reply to Hidden]

this is what I do not understand, it is only within the last year that I was diagnosed with bronchiectasis, but on more than one occasion especially in the early days I heard it mentioned under the general heading of COPD, opinions as to what category it falls under must vary throughout the country it would seem? I am under NHS Highlands and Islands Scotland.

[Hidden in reply to daveymac55]

Hi Daveymac

I'm sorry, I tried sending you a long and tortuous reply three times and it keeps deleting. I am now exhausted but will try again later. Basically COPD covers chronic bronchitis and emphysema. Bronchiectasis is a different kind of lung damage. There is a lot of confusion amongst the medical profession and patients about this, especially as some patients can have both. Therefore doctors can wrongly treat bronch as they would COPD, some just bumble along in the dark.I have spent my life teaching GPs. Hope that helps.

[Hidden]

I think from S### have read researched car tyers are cause of increae of lung diease.

Just like the say us with lung diease should not drink cabanated water as it puts co2 back into our bodies.

One could say particals of rubber from truck car tyers do same ..  after all tyers give of co2

After all when wheels was wood you was more at risk from plauge.

iosrphr.org/papers/v4i01/H0...

[clematis5932]

T you I have forwarded my e mail address.

[clematis5932]

That was Thank you I have forwarded my e mail address.

[vambo]

OK, I'll have a go. Email forwarded.

[Damon1864 Volunteer]

hi just applied to take part in the survey,should turn up some interesting results.

[katieoxo60]

Have agreed to take part, already did one with Kent University results due out soon.

[warwickstag]

I'm up for it.

[RibvanRey in reply to warwickstag]

We know that Warwick but that wasn't on offer mate. They are just looking for electronic contributions. 😈  Rib 

[warwickstag]

I can change a lightbulb.