Effectiveness and cost-effectiveness of a personalised self-management intervention for living with long COVID: protocol... 2023 Potter et al

Full title: Effectiveness and cost-effectiveness of a personalised self-management intervention for living with long COVID: protocol for the LISTEN randomised controlled trial

Abstract
Background
Individuals living with long COVID experience multiple, interacting and fluctuating symptoms which can have a dramatic impact on daily living. The aim of the Long Covid Personalised Self-managemenT support EvaluatioN (LISTEN) trial is to evaluate effects of the LISTEN co-designed self-management support intervention for non-hospitalised people living with long COVID on participation in routine activities, social participation, emotional well-being, quality of life, fatigue, and self-efficacy. Cost-effectiveness will also be evaluated, and a detailed process evaluation carried out to understand how LISTEN is implemented.

Methods
The study is a pragmatic randomised effectiveness and cost-effectiveness trial in which a total of 558 non-hospitalised people with long COVID will be randomised to either the LISTEN intervention or usual care. Recruitment strategies have been developed with input from the LISTEN Patient and Public Involvement and Engagement (PPIE) advisory group and a social enterprise, Diversity and Ability, to ensure inclusivity. Eligible participants can self-refer into the trial via a website or be referred by long COVID services. All participants complete a range of self-reported outcome measures, online, at baseline, 6 weeks, and 3 months post randomisation (the trial primary end point). Those randomised to the LISTEN intervention are offered up to six one-to-one sessions with LISTEN-trained intervention practitioners and given a co-designed digital resource and paper-based book. A detailed process evaluation will be conducted alongside the trial to inform implementation approaches should the LISTEN intervention be found effective and cost-effective.

Discussion
The LISTEN trial is evaluating a co-designed, personalised self-management support intervention (the LISTEN intervention) for non-hospitalised people living with long COVID. The design has incorporated extensive strategies to minimise participant burden and maximise access. Whilst the duration of follow-up is limited, all participants are approached to consent for long-term follow-up (subject to additional funding being secured).

Open access, https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-023-07090-w

 

Those are not the same thing. This is the difference between token patient "involvement" and actual participation. And of course they didn't listen to a damn thing the patients told them. And called it LISTEN. Orwellian. The design reeks of a pre-determined conclusion.

I genuinely cannot process what these people are even thinking. It's been 3 years, patients have been enduring it on their own for the whole duration. What the hell do they even think they're contributing here? They understand nothing of the illness, don't listen to patient input and think they're teaching things, which they don't even understand themselves.

And like I said about DecodeME being able to meet its recruitment target with support from the healthcare system, they have direct involvement from GP practices to recruit the participants. This is normal, except for a bad purpose here.

In the end this is basically the equivalent of some bureaucratic office collating some stuff they found on the Internet, like when some shady company sells a book of business grants and loans programs that can all be easily found on the Internet, they just bind it in an expensive book and sell it for hundreds. Ask me how I know about that scam...

Participants allocated to the LISTEN intervention will received a personalised self-management support package. To avoid contamination, participants allocated to this group will be asked to not access local rehabilitation services until after the 3-month follow up is complete. The trial intervention will comprise two components, (a) up to six remotely delivered (via a secure web video conferencing system or telephone) one-to-one personalised self-management support sessions (over a 10-week period, each maximum of 1 h) and (b) access to print and web-based resources. These resources primarily refer to a LISTEN book, co-designed by people with lived experience of long COVID and sent to participants for use within the one-to-one sessions [10]. The book includes narratives of individuals with long COVID, their challenges and problem-solving ideas for navigating everyday life. Use of personal communities, including peer-support groups, and specific online information sources will also be encouraged.​

And just like PACE the economics of this are unrealistic. Obviously this is a useless waste of resources but given the sheer number of people affected, it's absurd to think that it's any realistic to have such time-consuming 1:1 sessions. This is delusional fantasy, might as well have a unicorn dust factory in the mix.

And 6-week evaluation is a complete joke. It's been 3 freaking years damnit. How can actual professionals genuinely learn nothing from experience? It's baffling.

I do hereby want to offer some apology to BPS ideologues. I thought they were uniquely bad at their job. It turns out they are very average, it's the average that is complete garbage, an average that doesn't feature any best, or even better.