# Sjögren’s Hands-On Practice Exchange (SHAPE): a qualitative, expert opinion project in Sjögren’s disease clinical practice

## TL;DR

This study gathers expert opinions on how Sjögren’s disease is assessed and managed globally, highlighting inconsistencies in definitions and practices.

## Contribution

The study identifies key themes and lack of consensus in defining critical aspects of Sjögren’s disease in clinical practice.

## Key findings

- Seven major themes emerged, including disease classification and severity, with no consensus on four topics.
- Definitions like 'systemic involvement' and 'extra-glandular symptoms' are inconsistently applied.
- Experts disagreed on whether patient perspectives should be included in key definitions.

## Abstract

Sjögren’s disease (SjD) is a multifaceted, systemic autoimmune disease with substantial clinical heterogeneity. The objective of this study was to conduct a qualitative expert opinion exercise to explore how SjD is assessed, evaluated and managed in international clinical practice.

A qualitative research design was used to elicit the expert opinion of 8 clinicians. Two researchers interviewed each clinician individually. The results of the interviews were synthesised using thematic analysis, and draft definitions of key terms were prepared. A group workshop was held to discuss/validate the interview results and refine the working definitions.

The clinicians had extensive experience in managing SjD from different countries. Seven topics emerged as major themes: disease classification, disease activity, relevant subpopulations, disease severity, disease progression, disease remission, and unmet needs. For 4 of these topics, there was no consensus – particularly regarding definitions that could be used in a clinical setting. The terms “systemic involvement” and “extra-glandular symptoms” have similar meanings but lack consistent application between clinicians. There was a lack of consensus on what “severity” refers to – whether it is severity of disease damage, the nature of disease manifestations, the potential for irreversible damage, or level of symptoms. There were also conflicting opinions regarding whether patient perspectives should be incorporated in key definitions.

There is currently a lack of standard definitions specifically for daily practice, which may contribute to high variability in clinical assessment and management. The definitions proposed in this study represent initial working concepts and are intended as a first step to promote further discussion among SjD experts to facilitate a more unified routine evaluation of patients.

Not applicable.

The online version contains supplementary material available at 10.1186/s41927-025-00606-8.