Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID, 2024, Wang+

[SNT Gatchaman]

Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID: a population-based longitudinal cohort study
Jiunn Wang; Henry Goodfellow; Sarah Walker; Ann Blandford; Paul Pfeffer; John R Hurst; David Sunkersing; Katherine Bradbury; Chris Robson; William Henley; Manuel Gomes

OBJECTIVES
To examine trajectories of functional limitations, fatigue, health-related quality of life (HRQL) and societal costs of patients referred to long COVID clinics.

DESIGN
A population-based longitudinal cohort study using real-time user data.

SETTING
35 specialised long COVID clinics in the UK.

PARTICIPANTS
4087 adults diagnosed with long COVID in primary or secondary care deemed suitable for rehabilitation and registered in the Living With Covid Recovery (LWCR) programme between 4 August 2020 and 5 August 2022.

MAIN OUTCOME MEASURES
Generalised linear mixed models were fitted to estimate trajectories of functional limitations, using the Work and Social Adjustment Scale (WSAS); scores of ≥20 indicate moderately severe limitations. Other outcomes included fatigue using the Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F) reversed score (scores of ≥22 indicate impairment), HRQL using the EQ-5D-5L, and long COVID-related societal costs, encompassing healthcare costs and productivity losses.

RESULTS
The mean WSAS score at 6 months after registration in the LWCR was 19.1 (95% CI 18.6, 19.6), with 46% of the participants (95% CI 40.3%, 52.4%) reporting a WSAS score above 20 (moderately severe or worse impairment). The mean change in the WSAS score over the 6-month period was −0.86 (95% CI −1.32, –0.41). The mean reversed FACIT-F score at 6 months was 29.1 (95% CI 22.7, 35.5) compared with 32.0 (95% CI 31.7, 32.3) at baseline. The mean EQ-5D-5L score remained relatively constant between baseline (0.63, 95% CI 0.62, 0.64) and 6 months (0.64, 95% CI 0.59, 0.69). The monthly societal cost per patient related to long COVID at 6 months was £931, mostly driven by the costs associated with working days lost.

CONCLUSIONS
Individuals referred to long COVID clinics in the UK reported small improvements in functional limitations, fatigue, HRQL and ability to work within 6 months of registering in the LWCR programme.


Link | PDF (BMJ Open) [Open Access]

 

[NelliePledge]

Use of functional as in ability to function rather than the dodgy psychosomatic makes a change. What they’re describing as “small improvement” after 6 months - let’s see after 12

 

[Hutan]

4087 adults diagnosed with long COVID in primary or secondary care deemed suitable for rehabilitation and registered in the Living With Covid Recovery (LWCR) programme between 4 August 2020 and 5 August 2022.

To help address these challenges, a bespoke digital health intervention, Living With Covid Recovery (LWCR), was developed and implemented across 35 long COVID clinics in the UK.7 The LWCR intervention was designed to facilitate remote rehabilitation and to support the recovery of people living with long COVID. The LWCR collected patient-reported outcome measures (PROMs), encompassing the aspects of breathlessness, fatigue, anxiety, cognition and depression, enabling clinicians to monitor and adjust the care provided to each patient.8

The LWCR programme was developed collaboratively by a multidisciplinary team including clinicians, patient and public involvement (PPI) repre- sentatives, academics and an industry partner, and encompasses three key components: (1) a mobile app for patients, which collects their symptoms and uses that information to deliver tailored, personalised advice; (2) a dashboard that allows clinicians to review patient’s progress and communicate with them and (3) a clinical pathway that specifies how patients can safely receive this remote supported care. Patient information collected through the LWCR app enables the long COVID clinics to manage the high volume of patients and provide remote supported care.

Fatigue seemed to be the dominant symptom explaining the variation in functional limitations, with a substantial impact on the individual’s ability to work and activities of daily living.

Other outcomes included fatigue using the Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F) reversed score (scores of ≥22 indicate impairment)

The mean reversed FACIT-F score at 6 months was 29.1 (95% CI 22.7, 35.5) compared with 32.0 (95% CI 31.7, 32.3) at baseline.

That's not a very impressive improvement over the 6 months, considering natural improvement.

All analyses were based on complete cases; we acknowledge that individual dropouts may have in- troduced bias.

And that the people who dropped out may have been too sick or too disillusioned to turn up to the follow-up.

 

[MSEsperanza]

In addition to what was already said above: Not only very little mean improvement but if I understood properly all scores still indicate impairment?

Other outcomes included fatigue using the Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F) reversed score (scores of ≥22 indicate impairment)

Why did they use the reversed score? Is this common (if not -- why confuse things regarding comparability ?)

The mean reversed FACIT-F score at 6 months was 29.1 (95% CI 22.7, 35.5) compared with 32.0 (95% CI 31.7, 32.3) at baseline.

Sorry, only was able to read the abstract: Does the paper also report the proportions of participants who scored worse? (Apart from the already mentioned problem not having the data from those who dropped out?)

The mean EQ-5D-5L score remained relatively constant between baseline (0.63, 95% CI 0.62, 0.64) and 6 months (0.64, 95% CI 0.59, 0.69).

Why not worth to be mentioned in the conclusion? And again, the figures appear also to comprise worsened scores so would be interesting to have exact numbers on that (aka harms)?

 

[Dolphin]

Copied from UK News
Not sure where to post this.

ME Association:

University of Exeter: Long Covid could cost the economy billions every year

"Patients were asked to complete questionnaires on the app about how long Covid was affecting them – considering the impact of the condition on their day-to-day activities, levels of fatigue, brain fog, health-related quality of life, relationships and ability to work.

The study found that on average, all the individuals who had been referred to long Covid clinics in the UK reported little improvement in their ability to perform day-to-day activities, fatigue, quality of life and ability to work over the first six months after seeking help for their symptoms."

Read more:
https://news.exeter.ac.uk/faculty-o...d-could-cost-the-economy-billions-every-year/

https://twitter.com/user/status/1857034585290191170

 

[Kitty]

The study found that on average, all the individuals who had been referred to long Covid clinics in the UK reported little improvement in their ability to perform day-to-day activities, fatigue, quality of life and ability to work over the first six months after seeking help for their symptoms.

If the study manages to say "This approach isn't working" to government, it'll have been well worth doing even if the results were entirely predictable.

 

[rvallee]

If the study manages to say "This approach isn't working" to government, it'll have been well worth doing even if the results were entirely predictable.

From clips of the COVID inquiry I see on Xitter, when they talk about LC and the context of clinics, it's always with the clear assumption that they are very effective. Talks about making more referrals, what capacity they have, new clinics and so on.

And yet pretty much all patient testimonials point out that they are totally ineffective.

It's truly two competing universes. What most health care professionals and what the vast majority of patients talk about, despite talking about the same thing, may as well be from parallel universes. There is simply not getting through, it has been politically decided that they are effective and no evidence otherwise seems to make a difference. And either the professionals can't tell the difference, or simply repeat what they have been ordered to, or a combination of both.

 

[Hutan]

Seeing this thread again, I am amazed again at how poor the results of the clinics were. I mean, I would have expected natural recovery alone to have produced better results.