Patients were involved throughout the review process. Two members of the public with a history of MUS contributed to the writing of the review protocol. They, along with a person with experience of fibromyalgia, went on to be active members of our Expert Advisory Group. The Expert Advisory Group was made up of subject experts, clinicians and our patient and public involvement (PPI) representatives(experts by experience). There were two whole-group meetings: the project team and one of the Expert Advisory Group, held at the School of Health and Related Research (ScHARR) but with an independent chairperson. These were at the beginning of the review to discuss plans and potential issues before the review got started, and at the end of the review to report the results of the review. Between these meetings, the Expert Advisory Group were e-mailed at key stages in the project to receive updates onprogress and to be invited to contribute any feedback.
In addition to the two whole-group meetings, a meeting with JL, AS and MB was held in London solely for the PPI representatives. The purpose of this meeting was to allow a more informal discussion of the project, in particular the qualitative and quantitative reviews, with a focus on a patient point of view.The PPI representatives were also given a booklet containing plain English information on the systematic review process.All of the PPI representatives made substantial and valuable contributions to the project. Providing a patient perspective at each stage of the review enabled the project team to gain a deeper understanding of the issues arising from the literature, and kept the importance of patient perceptions of their symptoms and health-care provision in focus.
One patient with MUS wrote:
Being involved with this review has opened up my understanding of how important it is when one has ‘unexplained symptoms’ to take part in one’s own recovery and health and how difficult it must befor doctors to have patients who look to them as saviours, not to be able to diagnose and then treat. I thoroughly enjoyed having an insight into both doctors’ and patients’ point of view into the frustrating world of MUS! It also gave me hope seeing the differing and varied interventions available. It was encouraging to see that nearly all symptoms under the various headings seemed to respond to CBT.It has been a great pleasure to be involved with this study and review. The team were brilliant in making a very complex subject accessible and interesting to a lay person.
The other patient with MUS wrote:
It has been a fascinating experience being a small part of a very carefully thought out and thorough review. Credit should go to the team that managed to filter through all of the studies and create a model that allowed for some conclusions to be made. While the review didn’t perhaps reach the clear conclusions it aimed for, there were a lot of interesting observations: From a patient-perspective, the fact that there were few significant effects for any GP intervention, i.e. reattribution, GP led CBT, or GP MUS management, is quite worrying. It is useful knowledge that multimodal and CBT interventions have an impact on the majority of MUS. These findings are something that should be embraced and addressed by the NHS (although it’s interesting to see that there is little evidence supporting the impact on long-term health). It seems that patient caution and stigma can still be attached to CBT and similar therapies so I would be interested to find how this problem could be tackled in the future. It’s also a pity that little could be found that would benefit patients with ‘somatisation and generic physical symptoms’. I’ve really enjoyed working on this project and would be happy to contribute to any further studies.
The person with experience of fibromyalgia wrote:
My experience of being part of the stakeholder group: It was an enormous piece of research that was undertaken and I observed that it was done with great care. I always felt that my opinions, written and oral, were taken seriously and followed-up. I am not sure how valuable my contributions were. I do know that I tried my best to look at all the information and paid attention to the details as much as I tried to look at the bigger picture. I do think that having patient representatives helps to keep the research grounded in the real world. I was astounded by some of the outcomes, as they seemed counter to generally held beliefs. This only shows how important it was to collate this evidence. I do hope that the report will help many people with pain and other unexplained symptoms to reach relief that they have not yet achieve
