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Extended report
Elucidating the burden of recurrent and chronic digital ulcers in systemic sclerosis: long-term results from the DUO Registry
  1. Marco Matucci-Cerinic1,
  2. Thomas Krieg2,
  3. Loic Guillevin3,
  4. Barbara Schwierin4,
  5. Daniel Rosenberg4,
  6. Peter Cornelisse4,
  7. Christopher P Denton5
  1. 1Department of Experimental and Clinical Medicine, Division of Rheumatology AOUC, University of Florence, Florence, Italy
  2. 2Department of Dermatology, University of Cologne, Cologne, Germany
  3. 3Department of Internal Medicine, Centre de Référence pour les Vascularites Nécrosantes et la Sclérodermie Systémique, Hôpital Cochin, Assistance Publique-Hôpitaux de Paris, Université Paris Descartes, Sorbonne Paris Cité, Paris, France
  4. 4Actelion Pharmaceuticals Ltd, Allschwil, Switzerland
  5. 5Centre for Rheumatology and Connective Tissue Diseases, Royal Free Hospital, London, UK
  1. Correspondence to Professor Marco Matucci-Cerinic, Department of Rheumatology AVC, Denothe Centre, University of Florence, Florence, Italy; cerinic{at}


Objectives Digital ulcers (DUs) occur in up to half of patients with systemic sclerosis (SSc) and may lead to infection, gangrene and amputation with functional disability and reduced quality of life. This study has elucidated the burden of SSc-associated DUs through identification of four patient categories based on the pattern of DU recurrence over a 2-year observation period.

Methods Patients with SSc-associated DUs enrolled in the Digital Ulcers Outcome Registry between 1 April 2008 and 19 November 2013, and with ≥2 years of observation and ≥3 follow-up visits during the observation period were analysed. Incident DU-associated complications were recorded during follow-up. Work and daily activity impairment were measured using a functional assessment questionnaire completed by patients after the observation period. Potential factors that could predict incident complications were identified in patients with chronic DUs.

Results From 1459 patients, four DU occurrence categories were identified: 33.2% no-DU; 9.4% episodic; 46.2% recurrent; 11.2% chronic. During the observation period, patients from the chronic category had the highest rate of incident complications, highest work impairment and greatest need for help compared with the other categories. Independent factors associated with incident complications included gastrointestinal manifestations (OR 3.73, p=0.03) and previous soft tissue infection (OR 5.86, p=0.01).

Conclusions This proposed novel categorisation of patients with SSc-associated DUs based on the occurrence of DUs over time may help to identify patients in the clinic with a heavier DU burden who could benefit from more complex management to improve their functioning and quality of life.

  • Autoimmune Diseases
  • Epidemiology
  • Systemic Sclerosis

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