Patient Experience of Systemic Sclerosis-Related Calcinosis An International Study Informing Clinical Trials, Practice, and the Development of the Mawdsley Calcinosis Questionnaire

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dc.contributor.authorSaketkoo, Lesley Ann
dc.contributor.authorGordon, Jessica K.
dc.contributor.authorFligelstone, Kim
dc.contributor.authorMawdsley, Anne
dc.contributor.authorChaudhry, Humza A.
dc.contributor.authorValenzuela, Antonia
dc.contributor.authorChristensen, Angela
dc.contributor.authorKhalique, Samara M.
dc.contributor.authorJensen, Kelly
dc.contributor.authorWeinmann, Sophia C.
dc.contributor.authorBusman, Evan
dc.contributor.authorChung, Lorinda
dc.contributor.authorHsu, Vivien M.
dc.contributor.authorRussell, Anne-Marie
dc.contributor.authorSteen, Virginia D.
dc.date.accessioned2025-01-20T20:14:51Z
dc.date.available2025-01-20T20:14:51Z
dc.date.issued2023
dc.description.abstractThe patient experience of SSc-calcinosis was explored iteratively in a diverse and repre-sentative international cohort, reaching concept saturation. Pervasive disability, frustra-tion, symptom distress, and uncertainty created largely by complex, severe pain sensations are related to daily living with SSc-calcinosis. Patient observations and self-management behavior provide opportunities to educate clinicians and patients. Pa-tients are eager for self-management guidance. This investigation informed the develop-ment of a novel PROM, the MCQ, developed according to FDA guidance20,21 to assess the severity and impact of SSc-calcinosis for use in clinical studies and clinical practice. Further validation and translation studies of the MCQ are underway.
dc.fuente.origenWOS
dc.identifier.doi10.1016/j.rdc.2023.01.017
dc.identifier.eissn1558-3163
dc.identifier.issn0889-857X
dc.identifier.urihttps://doi.org/10.1016/j.rdc.2023.01.017
dc.identifier.urihttps://repositorio.uc.cl/handle/11534/92224
dc.identifier.wosidWOS:000978771900001
dc.issue.numero2
dc.language.isoen
dc.pagina.final481
dc.pagina.inicio463
dc.revistaRheumatic disease clinics of north america
dc.rightsacceso restringido
dc.subjectScleroderma
dc.subjectCalcinosis
dc.subjectRaynaud phenomenon
dc.subjectDigital ulcers
dc.subjectQualitative research
dc.subjectPatient-reported outcomes
dc.subjectSelf-Management
dc.subjectQualtiy of LIfe
dc.subject.ods03 Good Health and Well-being
dc.subject.odspa03 Salud y bienestar
dc.titlePatient Experience of Systemic Sclerosis-Related Calcinosis An International Study Informing Clinical Trials, Practice, and the Development of the Mawdsley Calcinosis Questionnaire
dc.typeartículo
dc.volumen49
sipa.indexWOS
sipa.trazabilidadWOS;2025-01-12
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