Patient Experience of Systemic Sclerosis –Related Calcinosis

Systemic sclerosis (SSc) -related calcinosis can be a debilitating, constantly painful, poorly understood vascular complication of calcium hydroxyapatite deposition in soft tissue structures that affects approximately 40% of both limited and diffuse cutaneous SSc subtypes. This publication describes the iterative and multitiered international qualitative investigations that yielded remarkable insights into natural history, daily experience, and complications of SSc-calcinosis providing pivotal information for health management. Patient-driven question development and field testing, according to Food and Drug Administration guidance, propelled the development of a patient-reported outcome measure for SSc-calcinosis, the Mawdsley Calcinosis Questionnaire.

Source: Rheumatic Disease Clinics of North America - April 6, 2023 Category: Rheumatology Authors: Lesley Ann Saketkoo, Jessica K. Gordon, Kim Fligelstone, Anne Mawdsley, Humza A. Chaudhry, Antonia Valenzuela, Angela Christensen, Samara M. Khalique, Kelly Jensen, Sophia C. Weinmann, Evan Busman, Lorinda Chung, Vivien M. Hsu, Anne-Marie Russell, Virgini Source Type: research