Progress with the research study: Developing and validating self report measures for fatigue and needs-based quality of life in neurological conditions
We are very grateful for the 155 questionnaire packs that we have received in response to the 206 we sent out to those who volunteered to partake in the study and met our eligibility criteria. We are therefore still waiting to receive 51 questionnaire packs back.
We are still in the process of sending questionnaire packs out, so if you have consented to participate but have not heard from us, you will be doing so soon.
If you received a pack and have changed your mind and no longer want to take part, please put a note to that effect in the reply paid envelope and return it and the unused questionnaire to us, so we can save on printing costs. We are ensuring we make most economical use of the BPF grant. Please note, we are not funded to routinely acknowledge the receipt of any questionnaire packs.
In total, we have sent out 530 information packs to people who stated they may be interested in participating in this study. Of these we are waiting to hear back from around 150 people about whether they consent to being a volunteer, and we can then assess whether they are eligible to participate from the screening proforma contained in the information pack. If they are eligible we can send them a questionnaire pack.
We are still urgently recruiting for normal controls, i.e. those who have not had Polio, who are over 50 years of age and of either sex. This is because we are looking to compare Post Polio participants and other people in the general population. At present we have sent information packs to 89 normals, but only 43 of these have confirmed they would like to be involved in the research. We would be most grateful if you could also email the research assistants if you have any partners or friends who may be willing to participate in the study: Please email or call email@example.com (0151 529 8004). Normal controls do a brief and completely anonymous questionnaire. It is important we have normal controls, as some people believe that PPS does not exist and the problems are just related to ageing.
Recognition of the importance of this study from international conferences
We are pleased to report that we have been accepted to give two platform presentations and some posters about this work at the International Society for Quality of Life Research, 17th Annual Conference, in London later this year. This will increase awareness of the needs of people who have had Polio.
Once again, we would like to thank you for your assistance and interest with this study.
Please see the graphs below showing the progress we have made with the above study so far. In summary, to explore issues associated with living with Post Polio Syndrome (PPS), 45 in-depth interviews have been conducted. The goal of these interviews was to find items to be used in the questionnaires we are developing, based on direct quotes from people with PPS. We are now in the process of putting these items together to create two questionnaires, one for fatigue, and one for quality of life.
From the graph below, you can see that our target was to interview 40 participants and we have met and exceeded this target by 5 participants. We have thus finished this phase of the study, and are due to start the next phase shortly.
The below graph shows the number of interview which have been conducted and in which month
In the next phase of the study, we are going to trial the draft questionnaires in a small group of PPS patients to identify any problems with wording or item dysfunction. The final questionnaire will then be posted out to a large sample of people with PPS. We need at least 250 people with PPS to complete and return the questionnaire pack.
As you can see from the below graph, we have not started sending out the questionnaires yet, but we will record the response rate of questionnaires on here. So if you wish to check the study’s progress, please look on this website for our updates.
The below graph will picture the number of completed questionnaires which have been posted back to us, and how far we are to reaching our target number as the month’s pass
We will also need to recruit age and sex matched “normal control” volunteers (people who do not have PPS) to complete the questionnaires so that we can check that fatigue in PPS is not just the same as fatigue from normal ageing. In particular, we are currently seeking these normal controlsat present.
If after seeing our current progress, you are interested in participating in this study, it may be useful to read the FAQs to help you decide if you want to take part.
If you would like to participate in this study as a PPS patient or normal volunteer, please email or call the research assistant Charlotte Taylor at firstname.lastname@example.org (0151 529 8004) and leave your email and postal address. Please place in the subject line of your email either “Person who has had Polio” or “Normal Volunteer”.
Frequently Asked Questions
There has been a marvellous response to the study which the researchers are very pleased about and they would like to thank you all for your interest.
However, a lot of you are asking the same questions so the Fellowship is providing answers to Frequently Asked Questions here, to give you some further guidance.
Please only ring the research assistants if you have questions which are not covered here, and they will ring you back if possible (funding from the BPF is limited and was intended for conducting the study itself).
About the study
1) What is the study?
The study title is “Developing fatigue & quality of life scales in neurological conditions“. Fatigue is a common symptom in both well and ill people, but appears to be more severe and different in nature in certain chronic disabling neurological conditions, such as Post Polio Syndrome. As the symptom of fatigue is subjective and has been described in a variety of different ways, researchers have struggled to analyse the severity of the problem. Quality of life has been widely studied but recent research work recommends that measures be created which focus on the issues which are important to the person with the condition. The aim of this study is to develop and validate self report questionnaires to measure fatigue and needs-based quality of life in people with Post Polio Syndrome.
2) What do I have to do in order to participate? Will I need to travel anywhere?
The first stage of this study will involve some of you being asked if you would like to be interviewed. These interviews will be done in a private, quiet room or by telephone if you are unable or would prefer not to travel. The interview will be tape recorded and later typed up. These anonymous transcripts will be used to understand your condition better and choose some statements which are good examples of how it feels to live with your condition. A small group of those interviewed may be asked if they would like to meet an investigator of this study, and will trial the draft questionnaire and then have a short face to face interview about it. This will allow any problems with the questionnaire to be identified. It should be noted that due to the marvellous response they have had, the researchers are already in the process of selecting interview participants, therefore it is likely that most of you will now be participating in the questionnaire stage of the study if you decide to proceed.
The questionnaire will be given to a large sample of you to complete, along with some other tried and tested questionnaires looking at fatigue, disability, anxiety/depression and quality of life. This pack of questionnaires requires ticking multiple-choice questions. The questionnaires will take around 20-30 minutes to complete, but you need not complete them in a single sitting. To help the researchers judge the accuracy of the questionnaire in measuring fatigue and quality of life in chronic neurological conditions over time, you may be invited to do a further questionnaire (test-retest) after a suitable time interval, of about 2 weeks. These questionnaire stages involve no travel as they can be posted to you.
It is entirely up to you whether you choose to apply and to help you decide you will have a detailed patient information leaflet to read before signing any consent form.
3) How can the study help people like me who have PPS?
Participation will help direct future research in fatigue and needs-based quality of life from which participants and future patients may potentially benefit.
4) What is the next step if I think I may be interested in participating in the study?
If you are interested in participating and would like more information without any obligation, please send the BPF magazine article slip about this study, which is entitled “Helping people with PPS”, to the researchers, and they will then send an information pack to you. The information pack has more written details about the study in a patient information leaflet, consent forms etc.
5) What criteria do I need to meet in order to be eligible for participating in the study? What if the history of my Polio/PPS is unusual?
When you have considered the study and signed a consent form to take part, you can fill out the short proforma, which is a short tick box screen to check you are eligible to participate in the study. This can be sent by the researcher to you.
6) What if I do not have an official diagnosis of PPS?
Again this will not be a problem provided that you meet the criteria for participation in the study. The proforma will indicate whether you meet these criteria or not.
7) Do I put in my current GP and consultant details or the ones I had when had acute Polio?
Your current GP and consultant.
8) Does my GP have to know I am participating in the study?
The ethics committee approving the study design thought it was part of good practice that your GP had a brief letter stating you were taking part in this research.
9) Does it matter if I am unsure of consultant contact details? Or if I don’t have a consultant for PPS?
If you do not have a consultant for PPS you can still take part. Please try your best to make any hospital contact details accurate, because the researchers have limited time and funding to make contact with people.
10) If I have numerous consultants for differing medical conditions, as well as PPS, do I need to put the details of all the consultants down?
No, you do not need to write down details of all your consultants for every medical condition. Please put down the most relevant ones that may be related to your post- Polio condition e.g. consultants for the respiratory system or muscle weakness.
11) Are there any ways my family and friends can help with research?
Yes, the researchers want to compare fatigue results in people with PPS to people without a history of Polio, to check that the fatigue in PPS is not just the same as ordinary fatigue. Therefore they want volunteers of any age to agree to anonymously complete the tick box questionnaire just once, and post it back.
Secondly, your family could help with travel if you want to do a face to face interview, which can be a more satisfactory experience than a telephone interview.
Honorary Research Assistant Contact details
Miss Charlotte Taylor
Walton Centre for Neurology and Neurosurgery NHS Trust,
Clinical Trials Unit,
0151 529 8004