Some notes and flashlights from ERS congress 2020 in Vienna.
ERS congress 2020
This years ERS congress was very comfortable for me: sitting at home, watching the sessions go by.
Of course, I would have been happier to be in person at this congress in more or less my home town.
Such a congress is not really a working event for me, it is more a chance to gather impressions from the viewpoint of a trained lay person.
Having the congress pure virtual might have introduced even more bias than a personal presence would have done because of more biased selection of topics.
One of the first impression was some low count of sarcoidosis topics - everyone seemed to wait for the treatment guideline. On the other hand, there have also been no real discussions of the ATS diagnosis guideline - maybe, because it simply concluded what was commonly agreed state of the art since many WASOG statements.
Also the selection of topics from the poster sessions is not really a news list, but rather a perspective, how clinicians look at patients and interpret/portray patients behaviour and features in some aspects.
Session 301 - Symposium Severe thoracic sarcoidosis: where do we stand ?
Jan Grutters began his introduction on Pathogenesis of pulmonary fibrosis in sarcoidosis with some numbers on lifetime risk: 1% for man, 1.3% for woman.
We mentioned that already during our last call, that there are strange numbers around.
The lifetime risk mentioned by Dr. Grutters of ten times the numbers from Switzerland
(Deubelbeiss, 2010: lifetime risk 0.12%).
Or the fact, that Canada reports a huge number of WASOG recommendation conform sarcoidosis diagnoses without need for biopsy
(Fidler, 2019) - 4 out of 5 diagnoses have been without
biopsy.
These facts make me (from the advocates perspective) reflective on two things:
- How shall we interpret and communicate numbers? Do we want to have sarcoidosis still to be a rare disease?
- How comes the number for prevalence? How long are patients counted to have this disease? How do we communicate on that in the future?
Daniel Culver could have been a patient advocate in this session. He tried to discuss the term from the headline of the session: "What is severe?" And he gave some synonyms: serious - grave - dire - alarming - dangerous - distressing. And showed, that it is not easy to judge on severity. He brought up QoL as important concern for patients and remembered, that it is still not really known if/which comorbidities come from sarcoidosis directly and which come from medications.
Vasileios Kouranos told about the management of cardiac sarcoidosis.
You can also listen to one of his presentions with very similiar slides on youtube:
Treatment in cardiac sarcoidosis.
In the session's chat I filed the (usual) question on the need for a multidisciplinary approach.
Of course, this question was just to collect/show up this statement once more from a clinician.
Oral Poster Session 364 - Sarcoidosis: from genetics to epidemiology
Poster 4392 - Whole Exome Sequencing in familial sarcoidosis ...
Alain Calender - this is the bad guy, that pushed me to do something for awareness of sarcoidosis in children -
presented this poster on genomic investigations in familial sarcoidosis.
He is part of the French - Austrian cooperation on research around mTOR.
Thomas Weichhart - the Austrian author in this cooperation, is also on an other poster 4394 on autophagy targeting RAC1 and mTOR.
Poster 4395 - Exhaled breath analysis using eNose technology in patients with sarcoidosis
Catharina Moor presented discrimination results from her
eNose,
which could discriminate ILD-patients from healthy controls.
There are a lot of open questions for me - nevertheless, I hope it will help in practice.
Poster 4398 - Type 2 diabetes mellitus risk associated with sarcoidosis
Alisabeth Arkema showed increased incidence of type 2 diabetes (T2D)
in sarcoidosis patients with and without treatment with glucocorticoids (GC).
Incidence rates [per 1000 patient years] were
control : untreated : treated = 5.7 : 8.4 : 12.7
Finally she concluded, that the risk for T2B is highest at begin of treatment and even after more than a decade of activity in that field she doesn't finally know,
if this increased incidence of T2D comes from higher disease activity or from GC. Nevertheless, GC treated patients should be monitored for T2D.
ePoster Session 199 - Clinical issues in granulomatous lung diseases
Poster 3002 - Correlation among pulmonary function tests and radiologic involvement in the monitoring of sarcoidosis
This poster from two clinics in Barcelona concluded, that after 5 years observation there was no correlation between PFTs and CT scan changes
in the follow-up of pulmonary sarcoidosis.
Of course, this is not really a new insight. But it is worth to mention, that now is time for new approaches.
Poster 3005 - Comorbidities in sarcoidosis: a retrospective Italian study
A data collection from Parma on patients with pulmonary sarcoidosis. A little surprising opthalmologic problems (30%) are only on rank 6 after cardiovascular (76%), gasteroenterological (74%), endocrine-metabolic (61%), osteoarticular (57%) and urinary-nephrological (31%) comorbidities.
Poster 3006 - The Profile of Sarcoidosis in Greece
Compared to poster 3005 this one showed a very different spectrum of sarcoidosis involvement (involvement vs. comorbidity??): lung, skin, arthritis, eye (the numbers in the text don't agree with the diagram).
Poster 3012 - Predictors of Progression in Patients with Pulmonary Sarcoidosis
Patients before and after 3 month treatment with methylprednisolon have been compared
and the treatment outcome for patients with blood group B Rh negative was the worst.
There have been investigations of blood group distributions among patients since the sixties, but this one looked specifically at treatment outcome.
Poster 3015 - Personality and chronotype as predictors of sarcoidosis-associated fatigue
Evening preference was associated with a greater number of sarcoidosis-associated fatigue symptoms, but only in the presence of anxiety and insomnia. From personality factors, only low conscientiousness was associated with fatigue indices.
Poster 3016 - Correlation of King’s Sarcoidosis Questionnaire with clinical parameters
KSQ score is only partially explained by organ manifestation and lung function impairment,
but correlates strongly with BMI.
(Not even a poster, only the abstract there ...)
Poster 3018 - Illness perceptions, coping and fatigue among patients with sarcoidosis
Exploring and discussing the illness perceptions and, if necessary, correct them may have an impact of fatigue.
Poster with Dorrit in the authors list ...