Symptom-based stratification of patients with primary Sjögren's syndrome [...] (2019) Tarn et al. The Lancet

Cinders66 · Sep 28, 2019

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(19)30042-6/fulltext

Symptom-based stratification of patients with primary Sjögren's syndrome: multi-dimensional characterisation of international observational cohorts and reanalyses of randomised clinical trial

Hutan · Sep 28, 2019

A nice example of the value of patient registries. If you have well-characterised patients with wide-ranging baseline data, then any trials done using those patients provide information that can be used as it has been here.

They've been able to look to see what patient characteristics predicted response to two different treatments.

The UK Primary Sjögren's Syndrome Registry (UKPSSR) is a national observational cohort of clinically well-characterised patients with primary Sjögren's syndrome, who fulfil the 2002 American European Consensus Group (AECG) classification criteria. Our study cohort was recruited between Aug 13, 2009 and Sept 27, 2011.

12 The UKPSSR is an ongoing initiative. The UKPSSR holds detailed clinical and laboratory data that is collected prospectively, including patient-reported symptoms collected using standardised questionnaires.
Two independent European cohorts of patients with primary Sjögren's syndrome were used as validation cohorts: the French Assessment of Systemic Signs and Evolution of Sjögren's Syndrome (ASSESS) cohort, and the Norwegian Stavanger cohort. All patients met the 2002 AECG criteria. The ASSESS cohort is a French cohort of patients recruited from 15 tertiary centres for autoimmune diseases between 2006 and 2009. The Stavanger cohort consists patients with primary Sjögren's syndrome attending the Stavanger University Hospital (Norway), recruited between January, 2014, and August, 2016.

Baseline data that permitted our symptom-based stratification were available from two randomised, placebo-controlled trials of patients with primary Sjögren's syndrome; the JOQUER trial,
17 which investigated hydroxychloroquine treatment, and the TRACTISS trial,
18 which investigated rituximab treatment. In the JOQUER trial, 120 patients were randomly assigned (56 to hydroxychloroquine and 64 to placebo), of whom 107 had baseline data permitting symptom-based stratification. In the TRACTISS trial, 133 patients were randomly assigned (67 to rituximab and 66 to placebo), of whom 114 had baseline data permitting stratification.
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Snowdrop · Sep 28, 2019

Scanning this made me realise just how depressing (in the colloquial sense) it is to view a steady diet of the pure theoretical bullshit that is the BPS 'research'. It's refreshing beyond words to view research that actually seeks to truly solve a health issue.

This is clearly actual science.

This part in particular caught my eye:

For our initial exploratory clustering analysis, alongside the cardinal primary Sjögren's syndrome symptoms (pain, fatigue, dryness),

anxiety and depression were included because these symptoms are common in patients with primary Sjögren's syndrome, affect overall symptom burden (particularly pain and fatigue), and are relevant for clinical trial outcomes.

Furthermore, immune-mediated mechanisms have been implicated in depression, raising the possibility that depression might be a manifestation of the pathobiology of primary Sjögren's syndrome. Patient-reported data play an increasingly recognised role in clinical trials, therapeutic licensing, and health-care policy decisions, and are key to capturing quality of life and health economic outcomes.

Although some researchers might have concerns over the subjectivity and reliability of patient reported symptoms, the instruments we used to measure symptom severity have been shown to have excellent internal consistency and test-retest reliability.

Furthermore, the symptom profiles between the four subgroups that we describe differ markedly from one another and therefore the risk of misclassification due to variability in self-reported assessments is small.

Importantly, had our data not been robust, validation in two independent cohorts would have been highly unlikely. From a clinical perspective, our approach allows patient stratification at the point of care. More importantly, symptoms are the key driver for patients with primary Sjögren's syndrome seeking medical help and hence the use of health-care resources.
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And when I looked at the coloured graph of the four types I noticed that it seemed there was a sub-type within the forth group (far right side of the pain dominant with fatigue group) as that's where I would fit.

In the discussion further down this was noted also.

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Symptom-based stratification of patients with primary Sjögren's syndrome [...] (2019) Tarn et al. The Lancet

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Symptom-based stratification of patients with primary Sjögren's syndrome [...] (2019) Tarn et al. The Lancet

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