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P.311 Structured assessment of patients with raynaud’s phenomenon- a way to follow patients with signs of very early diagnosis of systemic sclerosis

jsrd · 2026-06-05 · canonical JSON source

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Introduction Raynaud´s Phenomenon (RP) is described as one of the first symptoms in early systemic sclerosis (SSc). 1 Patients with RP who not yet fulfil formal classification criteria for SSc may be in the early stages of disease development. This subset of patients is of particular interest in the context of very early diagnose of Systemic sclerosis (VEDOSS). Timely recognition of VEDOSS can enable early interventions and potentially reducing risk of tissue damage.2 In Sweden, there is a quality-of-care register used to follow patients with rheumatic diseases, the Swedish Rheumatology Quality register (SRQ). However, until recently, it has not been possible to follow patients with RP only.Material and Methods Several physicians specialised in SSc and RP were in a focus group together with nurses and specialists in SRQ register. To create the RP module in SRQ we used the SSc diagnose as a model but scaled down the number of items that were gathered. After having selected items of interest based on their clinical usefulness, the module was digitally adapted according to the principles of the register.Results A new module for RP has been created and patients can now complete patient reported outcome measures which allows healthcare providers to evaluate treatment effects and follow patients’ symptoms over time. The module can be used all over Sweden. The patient answers Health Assessment Questionnaire, EuroQol-5 Dimensions. Further visual Analog Scale for pain, fatigue, RP, digital ulcers and general health are reported. Healthcare providers fill in blood pressure, number of digital ulcers, other ulcers and autoantibodies. Additionally, a simple registration for given botulinum toxin injection was developed.Conclusions We now have a module for monitoring patients with RP that meet the criteria for VEDOSS or later develop VEDOSS. It is now possible to detect worsening in health and then go further with investigations, patient centred support from healthcare providers and treatment aiming for less damage. The use of botulinum toxin injections can now be structurally followed in a similar way. This module in SRQ can help patients and healthcare providers to monitor how RP effects daily life and changes over time and is now used in several clinics in Sweden.References Haque and Hughes. Clin Med (Lond). 2020;20(6):580–587.Bellando-Randone, et al. Lancet Rheumatol. 2021;3(12):e834–e843.