Design, validation and implementation of the post-acute (long) COVID-19 quality of life (PAC-19QoL) instrument, 2021, Jandhyala

Abstract

Background
The novel coronavirus (SARS-CoV-2) has led to a global pandemic, resulting in a disease termed COVID-19, which commonly presents in adults as a typical infection of the upper respiratory tract. Although the disease is often acute, one in ten patients can continue to be affected for weeks or months, resulting in a state called long COVID. Existing evidence suggests there are no patient-centred instruments for capturing the impact of long COVID on the quality of life of people affected.

Methods
The Jandhyala Method was used to identify indicators of long COVID quality of life. The resulting post-acute (long) COVID-19 Quality of Life (PAC-19QoL) instrument was validated with a control group of unaffected participants and finally implemented in the dedicated patient registry, PAC-19QoLReg.

Participants
15 participants suffering from long COVID, who have been positively diagnosed with COVID-19, either via diagnostic or antibody tests and a validation control group of 16 healthy participants who have not suffered from COVID-19.

Main outcome measures
Indicators submitted by participants with long COVID that address the specific impact of the illness on their quality of life.

Results
Forty-four Quality of Life Indicators (QoLI) across four domains, namely, psychological, physical, social, and work, were agreed by the participants with long COVID to be relevant for the assessment of their quality of life (CI > 0.5). The validation stage identified 35/44 QoLIs that differentiated between the two groups, with a statistically significant difference between the mean QoLI Likert Scores (p < 0.05).

Conclusions
The PAC-19QoL instrument and PAC-19QoLReg prospective observational cohort clinical study will enable an understanding of disease progression, on and off treatment, on the quality of life of patients with long COVID beyond simple symptomatology.

Open access, https://hqlo.biomedcentral.com/articles/10.1186/s12955-021-01862-1

 

Can anyone find the actual list of questions for the final instrument? Can't tell if I'm just brain fog failing to find or if they've chosen to withhold?

 

This looks to be the questions?
https://hqlo.biomedcentral.com/articles/10.1186/s12955-021-01862-1/tables/2

 

Hmm yeah not sure if "Title and operational definition" means that is the actual language they use in the instrument or another title they've created for each point..

 

Another poor and biased questionnaire that adds nothing to what was there before. The questions all have the usual slant to frame anything happening as mental illness. About to run out of money because you can't work as a result of illness? That's anxiety! Ostracized by your friends and family, something people are doing to you? Also anxiety! Acknowledge that it's unsafe to drive in this condition? Well you can bet your ass that's loss of confidence, i.e. low self-efficacy. Can't smell food? Loss of enjoyment in life, clearly depression.

As usual the bias is in what and how many questions are asked. There seem to be at least 10 questions that are all variations of "are you anxious?" As usual, psychology is unable to move away from the "when have you stopped beating your wife?" standard it always abused, asking leading questions with the intent to "analyze" them in a specific way to reattribute to magical psychology.

Anyway there is worse out there but this questionnaire adds nothing of value, is of the typical BPS formula and clearly made by people with the usual agenda. I also note that for a questionnaire that is supposed to be about quality of life, it doesn't really do that.

But damn does clinical psychology suffer from start-up syndrome, always starting new projects, always developing "novel" things. Always developing, never delivering anything. I'm pretty sure we're already passed the point at which more of those always-novel-but-somehow-identical treatments or questionnaires have been developed than the number of possible combinations of aromas in scented candles. Hundreds of choices, none of them worth a single penny.

 

"15 participants suffering from long COVID"

"A second potential limitation can be addressed by the fact that a number of QoLIs failed to differentiate between the affected and non-affected individuals. These indicators perhaps infer broader concerns around long COVID not limited to sufferers. Furthermore, these may relate to the general impact of the restrictions imposed to control the spread of the virus, e.g., 'physical isolation from family members' and 'ability to use public transport'. Quality of life indicators such as 'low mood' and 'anger', 'anxiousness about future health of children' and 'future financial situation' are understandable concerns for anyone living through a global pandemic of a novel virus."