12 research outputs found
Demographic, clinical and antibody characteristics of patients with digital ulcers in systemic sclerosis: data from the DUO Registry
OBJECTIVES: The Digital Ulcers Outcome (DUO) Registry was designed to describe the clinical and antibody characteristics, disease course and outcomes of patients with digital ulcers associated with systemic sclerosis (SSc).
METHODS: The DUO Registry is a European, prospective, multicentre, observational, registry of SSc patients with ongoing digital ulcer disease, irrespective of treatment regimen. Data collected included demographics, SSc duration, SSc subset, internal organ manifestations, autoantibodies, previous and ongoing interventions and complications related to digital ulcers.
RESULTS: Up to 19 November 2010 a total of 2439 patients had enrolled into the registry. Most were classified as either limited cutaneous SSc (lcSSc; 52.2%) or diffuse cutaneous SSc (dcSSc; 36.9%). Digital ulcers developed earlier in patients with dcSSc compared with lcSSc. Almost all patients (95.7%) tested positive for antinuclear antibodies, 45.2% for anti-scleroderma-70 and 43.6% for anticentromere antibodies (ACA). The first digital ulcer in the anti-scleroderma-70-positive patient cohort occurred approximately 5 years earlier than the ACA-positive patient group.
CONCLUSIONS: This study provides data from a large cohort of SSc patients with a history of digital ulcers. The early occurrence and high frequency of digital ulcer complications are especially seen in patients with dcSSc and/or anti-scleroderma-70 antibodies
Functional impairment of systemic scleroderma patients with digital ulcerations: results from the DUO Registry
Objective. Digital ulcers (DUs) are frequent manifestations of systemic
scleroderma (SSc). This study assessed functional limitations due to DUs
among patients enrolled in the Digital Ulcer Outcome (DUO) Registry, an
international, multicentre, observational registry of SSc patients with
DU disease.
Methods. Patients completed at enrolment a DU-specific functional
assessment questionnaire with a 1-month recall period, measuring
impairment in work and daily activities, and hours of help needed from
others. Physician-reported clinical parameters were used to describe the
population. For patients who completed at least part of the
questionnaire, descriptive analyses were performed for overall results,
and stratified by number of DUs at enrolment.
Results. This study included 2327 patients who completed at least part
of the questionnaire. For patients with 0, 1-2, and DUs at enrolment,
mean overall work impairment during the prior month among
employed/self-employed patients was 28\%, 42\%, and 48\%, respectively.
Across all included patients, ability to perform daily activities was
impaired on average by 35\%, 54\%, and 63\%, respectively. Patients
required a mean of 2.0, 8.7, and 8.8 hours of paid help and 17.0, 35.9,
and 63.7 hours of unpaid help, respectively, due to DUs in the prior
month. Patients with DUs had more complications and medication use than
patients with no DUs.
Conclusion. With increasing number of DUs, SSc patients reported more
impairment in work and daily activities and required more support from
others