Co-designing personalised self-management support for people living with long Covid: The LISTEN protocol 2022 Heaton-Shrestha et al

Abstract

Background
Long Covid is recognised as a complex condition characterised by multiple, interacting and fluctuating symptoms which impact everyday life in diverse ways. The extent of symptom clusters and variability supports interventions that can accommodate heterogeneity, such as personalised self-management support. This approach is also advocated by people living with long Covid and guidelines published by the UK’s National Institute for Health and Care Excellence. Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) is one of 15 research projects funded by the UK’s National Institute of Health Research long Covid research programme. LISTEN aims to work with people living with or recovered from long Covid to co-design self-management resources, and a training programme for rehabilitation practitioners to deliver personalised support. The intervention will focus on people not hospitalised for Covid. The protocol presented here details the co-design of the LISTEN intervention which, on completion, will be evaluated in a randomised controlled trial.

Methods
The study will utilise an Accelerated Experience-Based Co-Design approach, and involve 30 people from England and Wales with lived experience of long Covid, and 15 rehabilitation practitioners living with, or supporting people with, long Covid. Through online meetings, participants will share their stories of long Covid, their challenges and strategies to live better with or recover from long Covid, their priorities for self-management resources and the practitioner training andcreate, review and refine these resources and the training. Throughout, LISTEN will draw upon the UK standards of public involvement in research.

Discussion
If effective and cost-effective, the intervention will be available across the UK’s National Health Service. The first of its kind, this study could make a difference to the lives of people with long Covid. To ensure impact, we have developed strategies to involve people from diverse backgrounds and mitigate potential barriers to involvement.

Open access, https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0274469

 

Obviously self-management is not advocated by patients, it's all there is because the medical profession has gone AWOL from this, it represents the complete absence of professional medical care. This is like saying that not thinking about eating is advocated by people in a state of famine because it's all they can do about it.

I've rarely seen a more blatant race to the bottom. Zero expectations, failure is basically being built brick-by-brick out of nothing.

We all know it doesn't matter, it will be implemented regardless, somehow the exact same model that has already failed.

And how is such a small effort just getting started? There have been probably over a dozen identical ones already and it's been 2.5 years.

 

“LISTEN” Okay?
This is a command and not a commitment, isn’t it?

 

They released the results today on a Zoom webinar. Details were a bit vague and they didn't answer all the questions put to them online.

They used something called Ox-paq to analyse the results. Patients improved by 3 points on that scale- which they were claiming is a success.

https://fundingawards.nihr.ac.uk/award/COV-LT2-0009

https://www.tudorgatesurgery.org.uk...f-management-support-co-design-and-evaluation

 

The BLOODY WELL LISTEN WILL YOU protocol. I like it.

 

I found a copy of the OX-PAQ questionnaire here

https://innovation.ox.ac.uk/wp-content/uploads/2016/08/Ox-PAQ_-English_-UK_sample-copy.pdf