Patients with [long Covid] attending a multidisciplinary evaluation: Characteristics, medical conclusions, and satisfaction, Gouraud et al, 2023

[SNT Gatchaman]

Patients with persistent symptoms after COVID-19 attending a multidisciplinary evaluation: Characteristics, medical conclusions, and satisfaction
Gouraud; Thoreux; Ouazana-Vedrines; Pitron; Betouche; Bolloch; Caumes; Guemouni; Xiang; Lemogne; Ranque

Objective
Among patients attending a multidisciplinary day-hospital program for persistent symptoms after COVID-19, we aimed i) to describe their characteristics ii) to present the medical conclusions (diagnoses and recommendations) and iii) to assess the patients' satisfaction and its correlates.

Methods
For this retrospective chart review study, frequent symptoms were systematically assessed. Standardized questionnaires explored fatigue (Pichot scale), physical activity (Ricci & Gagnon scale), health-related quality of life (Short-Form Health Survey), anxiety and depressive symptoms (Hospital Anxiety and Depression scale) and associated psychological burden (Somatic-Symptom-Disorder B criteria Scale). Medical record conclusions were collected and a satisfaction survey was performed at 3-months follow-up.

Results
Among 286 consecutive patients (median age: 44 years; 70% women), the most frequent symptoms were fatigue (86%), breathlessness (65%), joint/muscular pain (61%) and cognitive dysfunction (58%), with a median duration of 429 days (Inter-quartile range (IqR): 216–624). Questionnaires revealed low levels of physical activity and quality of life, and high levels of fatigue, anxiety, depression, and psychological burden, with 32% and 23% meeting the diagnostic criteria for a depressive or anxiety disorder, respectively. Positive arguments for a functional somatic disorder were found in 76% of patients, including 96% with no abnormal clinical or test findings that may explain the symptoms. Physical activity rehabilitation was recommended for 91% of patients. Patients' median satisfaction was 8/10 (IqR: 6–9).

Conclusion
Most patients attending this program presented with long-lasting symptoms and severe quality of life impairment, received a diagnosis of functional somatic disorder, and reported high levels of satisfaction regarding the program.

Highlights

• Patients with persistent symptoms after COVID-19, attending a day-hospital program.

• Abnormal clinical or test findings that may explain the symptoms were rare (<10%).

• A functional somatic disorder was diagnosed in 72% of patients.

• A large majority of patients were recommended physical activity rehabilitation.

• Satisfaction regarding the program was high, regardless of the main diagnosis.

Link | Paywall (Journal of Psychosomatic Research)

 

[SNT Gatchaman]

Selected quotes from methods —

During the day-hospital evaluation, patients undergo three consecutive one-hour consultations with an internist or infectious disease specialist, a psychiatrist, and an adapted physical activity specialist. The physical examination searches for sequelae of the initial COVID-19 infection and other comorbid conditions that may account for the persistent symptoms. The psychiatrist looks for comorbid psychiatric disorders and cognitive and behavioral mechanisms potentially involved in the maintenance of physical symptoms such as classical conditioning, focused attention on bodily functioning, catastrophizing, avoidance of symptoms and intolerance to uncertainty.

a brief psychoeducational intervention regarding their potential role is proposed during the consultation [...] consists in presenting the different potential cognitive and behavioral mechanisms as listed above, depending on the patient’s experience and consistent with his or her narrative.

presentation builds on examples from scientific literature but also from everyday life, in which these mechanisms are involved, in order to facilitate the physician-patient relationship and to promote therapeutic alliance

an adapted physical activity specialist evaluates the patient’s physical condition and exercise habits and perform standardized physical tests evaluating cardiorespiratory deconditioning and muscle strength deficiency

the patients and their general practitioner receive personalized recommendations as needed, including: complementary medical explorations, physical activity rehabilitation program, referral to a psychiatrist or psychologist, cognitive remediation, prescription of psychotropic drugs.

 

[SNT Gatchaman]

Selected quotes from results —

total of 301 patients attended [...] 15 were referred for persistent symptoms not attributed to COVID-19 and were excluded from the analysis. Among the 286 patients consulting for persistent symptoms after a SARS-CoV-2 infection, 201 were women (70.3%) and median age was 44 years (IqR: 34–55).

most frequent symptoms were fatigue (85.6%), followed by shortness of breath (64.9%), joint or muscle pain (60.5%) and cognitive dysfunction (57.6%). Persistent symptoms were lasting for a median duration of 428.5 days (IqR: 216–624).

35 patients (12.7%) were hospitalized, indicating severe COVID-19 episode

Questionnaires revealed low levels of physical activity and healthrelated quality of life, and high levels of fatigue, anxiety, depression and psychological burden, with 31.7% and 22.5% meeting the diagnostic criteria for a depressive or anxiety disorder.

Cognitive and behavioral features that may contribute to the maintenance of physical symptoms (i.e., classical conditioning, focused attention on bodily functioning, catastrophizing, avoidance of symptoms and intolerance to uncertainty) were identified in 75.5% of patients after clinical evaluation and were considered as positive arguments in favor of a diagnosis of functional somatic disorder. Among these patients, 95.6% did not present any abnormal clinical findings or test results that could potentially explain the symptoms. Therefore, a diagnosis of functional somatic disorder based on positive and negative arguments was retained for 72.2% of the patients after the multidisciplinary assessment.

Patients with a diagnosis of functional somatic disorder had similar rates of major depression (32.8%) and anxiety disorders (25.0%) than in the whole sample, with no significant difference compared to those without (χ 2 = 0.24, p = 0.63 and χ 2 = 2.22, p = 0.14 respectively). Therefore, there was no significant difference concerning the proportion of patients with a diagnosis of functional somatic disorder between those with and without a diagnosis of major depression (χ 2 = 0.24, p = 0.63).

 

[SNT Gatchaman]

In multivariable regression analyses, higher age, male gender, and having a clinical or paraclinical abnormality potentially explaining the symptoms were associated with higher levels of overall satisfaction, but not with the level of perceived effectiveness or estimated level of recommendation to other patients despite similar trends. Apart from the latter association, medical conclusions were not associated with differences in satisfaction measures.

Patients who participated in the satisfaction survey did not statistically differ from those who did not participate regarding gender, healthrelated quality of life, or medical conclusions. The only statistically significant differences were a slight difference regarding median age (46 years for respondents (IqR 36–55) and 42 years for non-respondents (IqR 31–52); p = 0.047 for Kruskal Wallis test) and a more important proportion of patients with palpitations among respondents (χ 2 = 4.18; p = 0.04) (supplementary material 2).

 

[SNT Gatchaman]

Selected quotes from discussion —

A major finding of our study is that most of them presented with both positive and negative arguments in favor of a diagnosis of functional somatic disorder, that is from persistent and debilitating symptoms that are no longer explained by a dysfunction of the organ they point to.

three quarters of these patients presented with positive arguments in favor of a diagnosis of functional somatic disorder, including a history of symptoms consistent with the role of classical conditioning, focused attention on bodily functioning, catastrophizing, avoidance of symptoms and intolerance to uncertainty.

A small proportion of patients exhibiting positive arguments in favor of a diagnosis of functional somatic disorder nonetheless presented with abnormal clinical findings or test results potentially explaining at least some of their persistent symptoms. This situation is compatible with a diagnosis of somatic symptom disorder according to the DSM-5 criteria.

From a clinical point of view, these potential mechanisms should not be considered as mutually exclusive, nor even independent. For instance, physical triggers such as acute infection have been shown to interact with cognitive and behavioral mechanisms in the onset of functional somatic disorder, thus precluding any dualistic approach.

A typical example is how psychological distress may influence the risk of developing an irritable bowel syndrome after an episode of acute gastro enteritis.

Perhaps surprisingly, patients with and without a diagnosis of functional somatic disorder had similar rates of depression and anxiety

The lack of abnormal clinical findings or test results in most of our patients is consistent with the clinical practice-based literature on postCOVID-19 symptoms, where a striking contrast between the severity of symptoms and the normality of physical examination and extensive routine laboratory tests is frequently reported. This also might be due to subtle or still unknown pathophysiological features.

 

[SNT Gatchaman]

Psychological factors may influence the perception of symptoms through increased attention or biased expectation. The belief that physical activity should be avoided until full recovery may lead to hypervigilance and physical deconditioning. Physical deconditioning was frequent in our population, with 91.2% of patients who were given recommendation regarding physical rehabilitation of impaired standardized physical tests performed by the adapted physical activity specialists.

Again, as we keep saying, no-one does this. The patients all report trying to get back to normal life and exertion (as I did). Perhaps they didn't even have a symptomatic episode, but rather an asymptomatic one (also as I suspect I did).

Validated treatments for persistent symptoms after COVID-19 are still lacking. The diagnosis of functional somatic disorder suggests that some treatment options such as cognitive behavioral therapy could be promising

I guess at least the needle has moved from "promising" to "could be promising".

 

[Hutan]

And so it goes on.

Followup was at 3 months. Do they say how many of the 286 patients participated in the follow-up? As far as I can see, from the figures in the table posted above (numbers and percentages of the total - sample sizes are not directly reported ), the followup participation rate was about 50%.

The number of people who participated in the followup satisfaction survey is important information left out of the abstract.

I guess 3 months is short enough that many of the patients who did participate in the followup may not have yet realised that the diagnosis and recommended treatments were not helping.

 

[alktipping]

So heavily invested in repeating the same wilful mistakes of the past. gigo again.

 

[Sean]

and reported high levels of satisfaction regarding the program.

Yes, yes, yes. But did they recover?

I would report extraordinarily high levels of satisfaction from eating ice cream. But it does nothing to solve any of my health problems.

 

[SNT Gatchaman]

Do they say how many of the 286 patients participated in the follow-up?

A total of 140 patients responded to our invitation to be contacted for the satisfaction survey at 3-month follow-up (49.0% of the whole sample).

This study has also some limitations. [...] Third, only half of the patients responded to the satisfaction survey, which could have induced a selection bias regarding satisfaction results.

Still concluding —

Clinicians may fear that the diagnosis of functional somatic disorder could be perceived as stigmatizing by patients. This assumption was not supported by our results, given the high levels of satisfaction of patients observed overall, including those who were diagnosed with a functional somatic disorder. Of note, being a woman was associated with lower levels of satisfaction. This result warrants further examination but it is noteworthy that it did not depend upon the medical conclusions and that levels of satisfaction remained high in both men and women.

This high level of satisfaction might result from our approach that does not oppose psychological mechanisms to other mechanisms. Indeed, although the conclusion of clinical or paraclinical abnormal findings potentially explaining the symptoms was associated with higher levels of overall satisfaction, the conclusion of positive arguments in favor of a diagnosis of functional somatic disorder did not alter satisfaction levels.

A recognition that their "psychoeducational intervention" and language obfuscation may have had an effect —

It might result from specific characteristics of the program including the comprehensive medical workup and the brief psychoeducational intervention delivered during the psychiatric consultation. Most patients welcomed these explanations as opposed to labels they were previously facing such as “medically unexplained symptoms” or stigmatizing statement such as “it’s all in your head”.

Yes, yes, yes. But did they recover?

Whether this psychoeducational intervention and the subsequent proposed care may improve persistent physical symptoms will be the focus of further studies.

Of course it will. We could write the paper for them now: "promising".

 

[Hutan]

Thanks for posting all of this SNT.

Patients' median satisfaction was 8/10 (IqR: 6–9).

• Satisfaction regarding the program was high, regardless of the main diagnosis.

Do they give any further information about the results of the satisfaction survey?
If only 49% of the participants bothered to participate in the followup, I think it's safe to assume that most of the 'non-respondents' were not that grateful for the service they had received.

Given the interquartile ratio, it looks as though a quarter of the respondents gave a rating of 5 or below, which I think, given the politeness of people, probably counts as not satisfied.

So, 51% unknown but almost certainly mostly not highly satisfied + (25% of 49% = 12.25%) definitely not satisfied. It's looking to me as if a clear majority was not highly satisfied. With such a loss to followup, the authors absolutely do not have a basis for making the claims they do about satisfaction.

 

[cassava7]

Merged thread

Besides the low quality of evidence (retrospective study with a satisfaction survey), Prof Lemogne is an associate editor of the Journal of Psychosomatic Research. He was part of Matta et al’s study in JAMA Internal Medicine that purported to show that long Covid was associated with the belief of having had Covid but not serological testing, which was thoroughly scrutinized and subsequently corrected.

 

[Hutan]

I find this a bit horrifying - here is the reality of the BPS capture of Long Covid. People with persistent symptoms, with physical incapacity, are going to this clinic for help and, according to the abstract, the response is to tell 91% to exercise. 76% appear to be diagnosed with functional somatic disorder.

Can anyone see the full paper and report how many people these researchers say answered the satisfaction survey? Edit - threads have been merged - I suppose at least my reactions are consistent.

Is there any social media where people who have been to this clinic discuss their experiences?
Do the patients understand that they have received a diagnosis of functional symptom disorder?
Do they know what that diagnosis means?
Is it likely that it is mostly patients inclined to believe in the concept of functional somatic disorder who go to the clinic?

 

[Midnattsol]

I find this a bit horrifying - here is the reality of the BPS capture of Long Covid. People with persistent symptoms, with physical incapacity, are going to this clinic for help and, according to the abstract, the response is to tell 91% to exercise. 76% appear to be diagnosed with functional somatic disorder.

Can anyone see the full paper and report how many people these researchers say answered the satisfaction survey?

Is there any social media where people who have been to this clinic discuss their experiences?
Do the patients understand that they have received a diagnosis of functional symptom disorder?
Do they know what that diagnosis means?
Is it likely that it is mostly patients inclined to believe in the concept of functional somatic disorder who go to the clinic?

From the paper:
"A total of 140 patients responded to our invitation to be contacted for the satisfaction survey at 3-month follow-up (49.0% of the whole sample). Median [IqR] rating for overall satisfaction, perceived effectiveness, and level of recommendation to other patients were 8 [6–9], 7 [4–9] and 9 [6–10], respectively. Among the subgroup of 81 patients who received a diagnosis of functional somatic disorder, satisfaction results were similar: 8 [6–10)], 7 [3–10] and 9 [6–10], with no significant difference compared to those who did not (All p > 0.27 for Kruskal Wallis' tests)."

They also note that "higher age, male gender, and having a clinical or paraclinical abnormality potentially explaining the symptoms were associated with higher levels of overall satisfaction, but not with the level of perceived effectiveness or estimated level of recommendation to other patients despite similar trends".

 

[cassava7]

Can anyone see the full paper and report how many people these researchers say answered the satisfaction survey?

I do not have access to the paper but I have been told that it was 50%.

Is there any social media where people who have been to this clinic discuss their experiences?

Yes, long haulers who have been there do not recommend it at all. ApresJ20, the main long Covid patient organization in France, does not recommend it either.

Last year, as part of a small documentary on treatments for long Covid, a journalist with long Covid from the French public TV channel France 2 filmed the treatment that she was given at this clinic. Lemogne and Ranque were presenting FND-like explanations for long Covid symptoms and offered mindfulness therapy. The journalist ridiculed them in the report.

Do the patients understand that they have received a diagnosis of functional symptom disorder?
Do they know what that diagnosis means?
Is it likely that it is mostly patients inclined to believe in the concept of functional somatic disorder who go to the clinic?

CASPER is one of the only long Covid clinics based at a public hospital and it is in the heart of Paris, so this is why patients are being referred there, not because they have some particular inclination to believe in functional disorders.

 

[rvallee]

This is all very disturbing in that it shows that clinicians and researchers will report positive conclusions regardless of outcomes, even when there is widespread condemnation and reports of harm and psychological distress caused by gaslighting. There is a complete disconnect between patients and physicians, and as we've seen in a paper posted today, they will simply blame the patients no matter what, insisting that they are right simply because they could not possibly be wrong.

How can we trust the rest of medical evidence given this? This is terrible for trust in experts.

 

[Sean]

How can we trust the rest of medical evidence given this? This is terrible for trust in experts.

And trust is, by far, the single most important resource in clinical medicine.

Medicine already has a big enough problem with unjustified lack of trust, and they seem hell bent on adding a mountain of justified lack of trust on top of it. That cannot end well.