Pulling everything together

We are now at the stage of reviewing the evidence and information collected in the various elements of this project and starting to interpret the findings. To assist in this process we are tapping into health professional and research methods expertise from the project Advisory Group.

At our third Advisory Group meeting the research team gave an update on each of the elements of this project. The systematic review has been completed and the discussion and recommendations sections are being compiled. The survey of health professionals has closed and the responses collated for analysis. The third element, the qualitative study of patients’ perspectives is almost complete with just a few more interviews to be held. In the meantime we have started coding and the data emerging are looking very informative in relation to the questions we set out to answer.

Meeting with the Advisory Group was a chance for the research team to ask the health professionals for their thoughts and advice. For example there was a discussion about how often patients are reviewed to assess how they are managing with an orthotic, a question in the healthcare professional survey. The Advisory Group suggested comparing this information with BAPO guidance on frequency of patient review. Some of the survey respondents dealt with in-patient groups and after discussion with the Advisory Group we will try to separate out the in-patient and out-patient results.

The next stage now is to complete the analysis of the qualitative study and write the full report for submission to our funders, the NIHR HTA programme. Once they received the report they will check it and send it out to external peer review. We will be asked to address any comments from the peer reviewers and then the report will be published in the NIHR journal library. We will also be disseminating the findings in a variety of other ways – which we will tell you about in another blog.

Blogger: Catriona McDaid

Needles in Haystacks: Part 1: what sort of needles are we looking for?

For a good many of us, searching for information on a topic involves typing a word or phrase into Google and scrolling through the millions of hits! Searching for studies to include in a systematic review is a rather more rigorous process!  This two part blog will give you a flavour of what is involved.

Searches in a systematic review must aim to retrieve all the relevant evidence about the research question and follow a specific methodology, so that, if necessary, the search could be reproduced.  However, they also need to be conducted within the budget, time and resources available for the project. As Information Specialist for the project this is my responsibility.

My first job was to devise a search strategy that would be capable of identifying all the relevant studies. The medical literature is vast and indexed across a considerable number of bibliographic databases so it is important to be clear what you are searching for. Searches in a systematic review are based on the research question which is composed of four elements. For this review:

• Population is people with knee instability related to a neuromuscular disease or central nervous system disorder
• Intervention is orthotic devices
• Comparator is any used
• Outcomes  are any investigated

The main challenges of this project are the number of diseases and conditions of interest and the number of possible orthotic devices. Studies can be indexed very differently on different databases so it is important to think of all the terms that could be used to describe the devices. The clinical experts on our Advisory Group provided valuable input on the names of all the possible relevant orthotic devices, so we are confident that we will locate the relevant studies.

Because there are many, diverse neuromuscular diseases and central nervous system conditions, we could possibly miss some if we were to list them in our searches, even with clinical advice. It would make searches very long, unwieldy and time-consuming. Instead we plan to concentrate on finding studies that describe using an orthotic device to deal with knee instability. For the same reasons, the comparators and outcomes have not been included in the search.

Blogger: Rocio Rodriguez-Lopez

Checking we’re on the right course

Wednesday saw our first full Advisory Group meeting, where everyone involved could sit down, check on progress and discuss the next stages of the project. Logistically getting everyone together is never easy though we have found that at least initially it’s good to meet face to face so we can get to know each other. After that it’s easier to make the most of technology and have people join meetings with video conferencing.  As the project runs over 12 months there are only three such meetings planned and budgeted for, so it’s really important that we make the most of the time.

Plans for raising awareness of the project via this blog were agreed, with everyone getting involved in cascading links via their networks. These include key professional bodies, charities and organisations that provide support to people with neuromuscular diseases and central nervous system disorders.

Refinements were made to the details of the studies that will be included in the systematic review.  For example we had originally intended to only include studies with 20 participants or more. But as our clinical experts advised that few if any will include this many participants, we have removed the limit. This means we will capture as much of the evidence as possible in this under researched area.

We discussed the focus groups that will inform the survey of health professionals. Joanne our health economist presented the draft topic guide to the group. Through discussion she was able to add in some additional questions, for example, it will be important to find out whether patients are issued with a spare device or different devices at the same time.

We also discussed the best way of identifying patients to take part in interviews and the issues in recruiting from clinics and non-NHS settings. The routes we use will have implications for gaining both research ethics and research governance approvals, which can be lengthy processes. In order to make sure we include as many patients with a range of conditions we will be looking at using a variety of recruitment approaches so are exploring all the options further.

The structured discussion and resulting advice from group members was invaluable. The ‘Advisory Group’ lived up to its name and function: from offers of practical assistance in recruiting, to highlighting issues that might have been missed, to monitoring project progress.

Everyone agreed that it had been an interesting and positive meeting and certainly the advice from the health professionals was really helpful in informing the next stages. Now all we need to do is follow up on the agreed action points!

Blogger: Alison Booth 

Seeking patient representatives in Yorkshire region

Can you help us in our research?

We are a group of researchers at the University of York carrying out research into the use of orthotic devices to help adults with neuromuscular conditions who have an unstable knee.

We are seeking two people who can bring the perspective of patients to our Project Advisory Group.

The role of the Project Advisory Group is to make sure that the research takes into consideration the views of patients and healthcare professionals and to ensure the research is of a high standard. The project will last 12 months and started on 1^st April 2014. The group will meet three times over the year. We might also contact you occasionally in between meetings. We are seeking two people who

·                Have been offered an orthotic device to help with knee problems related to a neuromuscular condition

·                Are comfortable working as part of a small team

·                Are willing to share their opinions at a meeting and listen to the views of others

·                Are able to attend three Advisory Group meetings at the University of York– so live within easy travelling distance of York

You do not need to have any research experience just an enthusiasm and interest in the project. Information about the research and the team is available in our other blogs and pages.

If you would like to join us, please send an email to Catriona McDaid at kneeorthotics@gmail.com explaining why you would like to join the Project Advisory Group by Friday 25^th April.  You can also email Catriona if you have any queries about this role or would like further information.                       

Thank you for your interest.

Getting the perspective of patients

A priority for the OKIS project is to recruit two people to bring the perspective of patients to our Project Advisory Group. We have prepared an advert and a description of the role to send out to relevant patient organisations.

In summary:

• The role of the Project Advisory Group is to make sure that the research takes into consideration the views of patients and healthcare professionals and to ensure the research is of a high standard.
• The project will last 12 months, starting on 1st April 2014
• The group will meet three times over the year and we might also contact you occasionally in between meetings.
• We were seeking two people who:
• Have been offered an orthotic device to help with knee problems related to a neuromuscular condition
• Are comfortable working as part of a small team
• Communicate effectively and are willing to share their opinions at a meeting and listen to the views of others
• Are able to attend meetings at the University of York– so live within easy travelling distance of York

The people who express an interest in joining the project will take part in a brief telephone interview and the successful applicants appointed. We will be offering an induction session and mentor from the team should they wish some support in their role.