We continually seek clinician and patient feedback about how the LOCOMOTION study has created an impact. This may be about how clinicians provide care or how patients manage their condition. One area of feedback is about how study outputs, such as scientific publications, having provided an impact. Another area of feedback is about the experience and impact of participating in the study. One way we collect feedback is through the Participant in Research Experience Survey (PRES).
Examples of feedback we have received, which are detailed on this page are:
- Impact of BMJ Practice Pointer ‘Long COVID – an update for primary care’
- Feedback about participating in work package 1.2 ‘Service Co-Design’
- Impact of participating in work package 1.4 ‘Vocational Rehabilitation’
- Feedback about participating in work package 2.1 ‘Home monitoring of Long COVID symptoms’
- Impact of participating in work package 2.2 ‘Patient Reported Outcome Measures’
Impact of BMJ Practice Pointer ‘Long COVID – an update for primary care’
Our BMJ Practice Pointer ‘Long COVID – an update for primary care’ was published as an output from the LOCOMOTION study. The paper has received positive feedback from patients who have commented that the information is “fantastic” and “excellent”. It is making a difference to patients as evidenced by this moving feedback from one Long COVID patient. “It definitely made my Doctor listen and willing to investigate. I told her I feel fobbed off and gaslit ever since I’ve had this condition and it’s time they did something about it. I said I had a document from the BMJ and will bring it as they should be following these guidelines. At this point she seemed to listen. This will be the first time a doctor has actually seen me face to face since the pandemic began. It’s a really helpful chart and I think this will be my gateway to get the relevant checks I need.” Another patient’s feedback was – “I will be using this and need it so much! Thanks all.”
Feedback about participating in work package 1.2 ‘Service Co-Design’
Participating in LOCOMOTION interviews has been a therapeutic experience for many participants. It has provided them with an opportunity to reflect on their journey and process their lived experience. Barbara participated in the LOCOMOTION’s study around symptom experience and wrote to us afterwards. “Although I haven’t spoken to many people about my particular symptoms and the condition from my own perspective, I have found that the three women [one of which was the LOCOMOTION researcher] that I have talked to have been sympathetic, helpful and, indeed, reassuring.”
Impact of participating in work package 1.4 ‘Vocational Rehabilitation’
The LOCOMOTION study is unique in that researchers are also clinicians. Through work package 1.4, the clinical researcher asked therapists about employment law and its applicability to Long COVID., Some were unaware of this, and the following interview conversation with a therapist added value to the level of advocacy this participant would provide to their patients after the interview. “I’ve had one case where the lady’s equipment that she needed prior to contracting COVID was sent to her home so she could work at home. But now that they want her to go back into the office, her equipment’s not there and they’re saying because it’s at home we can’t get you the equipment to work in the office, which I find totally bizarre. So, it’s things like that. I think probably you know, now you’ve said that, looking at that Disability Act and Equality Act it might be having some more knowledge of that to help give some advice with that.”
Pacing is a strategy and rehabilitation approach utilised in Long COVID rehabilitation. It balances rest and activities in daily life, to manage symptoms such as fatigue and post-exertional symptom exacerbation. Participating in interviews has given participants real life experience of pacing. It has shown them how they can implement fatigue management strategies in real life. By breaking up interviews into sections, patient participants have told us that they have gained an understanding of what pacing looks like. They have also said they experienced the benefits of ending an activity before the point of fatigue. Encouragement from the clinical research fellow to do this has also helped people to adopt a self-permission approach to not have to do everything at once.
Feedback about participating in work package 2.1 ‘Home monitoring of Long COVID symptoms’
A patient who is advising on the LOCOMOTION study participated in work package 2.1. Which involves monitoring Long Covid symptoms and gathering patient feedback using lightweight wearable electronic equipment. The participant provided a testimonial of how participating in the study has benefited them, to help encourage others to participate. They said: “I found it so helpful to trial this part of the Locomotion study because it helped me find out what was causing some of my symptoms or making them worse. It wasn’t necessarily the things I expected! Finding out what was triggering my symptoms helped me to make adjustments. It might help you get the right help for your symptoms. It was easy to use and takes very little time.”
Impact of participating in work package 2.2 ‘Patient Reported Outcome Measures’
The C19-YRS is an assessment and monitoring tool, that is being validated and further developed through LOCOMOTION. Participants complete this assessment for work package 2.2 as an outcome measure. Completing the assessment can also help Long COVID patients to make sense of their symptoms. Symptoms that may have previously been misunderstood or not recognised as part of their condition. Through interviewing therapists as part of the LOCOMOTION peer support study, we were told the following. “Often they [patients] aren’t necessarily aware that their symptoms are Long COVID until they fill out our C19-YRS questionnaire. I think that triggers [brings up] a lot of symptoms that they didn’t necessarily link to Long COVID, and I think that’s where the peer support can be helpful as well.”
Other examples of impact from the LOCOMOTION study can be found on the Research Impact page. In addition to the scientific publications mentioned on this page, there are more LOCOMOTION publications, these can be found on our Scientific Publications page.