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

Humans Scleroderma, Systemic / complications Calcinosis / complications Surveys and Questionnaires Patient Outcome Assessment
Calcinosis Digital ulcers Patient-reported outcomes Qualitative research Qualtiy of LIfe Raynaud phenomenon Scleroderma Self-Management

Journal

Rheumatic diseases clinics of North America
ISSN: 1558-3163
Titre abrégé: Rheum Dis Clin North Am
Pays: United States
ID NLM: 8708093

Informations de publication

Date de publication:
05 2023
Historique:
medline: 11 4 2023
entrez: 7 4 2023
pubmed: 8 4 2023
Statut: ppublish

Résumé

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.

Identifiants

DOI: 10.1016/j.rdc.2023.01.017 PMID: 37028847
pubmed: 37028847
pii: S0889-857X(23)00017-0
doi: 10.1016/j.rdc.2023.01.017
pii:
doi:

Types de publication

Journal Article Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

463-481

Informations de copyright

Copyright © 2023 Elsevier Inc. All rights reserved.

Auteurs

Lesley Ann Saketkoo (LA)

New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA, USA; University Medical Center-Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, New Orleans, LA, USA; Section of Pulmonary Medicine, Louisiana State University School of Medicine, New Orleans, LA, USA; Tulane University School of Medicine, New Orleans, LA, USA. Electronic address: lsaketk@tulane.edu.

Jessica K Gordon (JK)

Department of Rheumatology, Hospital for Special Surgery, New York, NY, USA.

Kim Fligelstone (K)

Scleroderma & Raynaud Society, UK (SRUK); Federation of European Scleroderma Associations, UK.

Anne Mawdsley (A)

Raynaud's & Scleroderma Association-Care and Support, London, UK.

Humza A Chaudhry (HA)

New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA, USA; Tulane University School of Medicine, New Orleans, LA, USA.

Antonia Valenzuela (A)

Department of Rheumatology and Clinical Immunology, Pontificia Universidad Católica de Chile, Santiago, Chile.

Angela Christensen (A)

Doctors Hospital, Renaissance, TX, USA.

Samara M Khalique (SM)

Department of Rheumatology, Virginia Tech Carilion Clinic School of Medicine, Roanoke, VA, USA.

Kelly Jensen (K)

New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA, USA; Tulane University School of Medicine, New Orleans, LA, USA; University of Colorado School of Medicine, Denver, CO, USA.

Sophia C Weinmann (SC)

Department of Medicine, Division of Rheumatology and Immunology, Duke University Hospital, Durham, NC, USA.

Evan Busman (E)

Healthcare Patient Advocate, Atlanta, GA, USA.

Lorinda Chung (L)

Department of Medicine, Division of Immunology and Rheumatology, Stanford University School of Medicine and Palo Alto VA Healthcare System, Palo Alto, CA, USA; Department of Dermatology, Division of Immunology and Rheumatology, Stanford University School of Medicine and Palo Alto VA Healthcare System, Palo Alto, CA, USA.

Vivien M Hsu (VM)

RWJ-Scleroderma Program, Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ, USA.

Anne-Marie Russell (AM)

Respiratory Institute, University of Exeter, Exeter, UK; Respiratory Medicine, Royal Devon University Healthcare NHS Foundation Trust, UK.

Virginia D Steen (VD)

Division of Rheumatology, Department of Medicine, Georgetown University, Washington, DC, USA.

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Classifications MeSH

questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Patient Experience of Systemic...
questionsmedicales.fr › Maladies de la peau et du tissu conjonctif › Maladies de la peau › Sclérodermie systémique › Patient Experience of Systemic...
questionsmedicales.fr › Maladies métaboliques et nutritionnelles › Maladies métaboliques › Troubles du métabolisme du calcium › Calcinose › Patient Experience of Systemic...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Patient Experience of Systemic...
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Qualité des soins de santé › Mécanismes d'évaluation des soins de santé › Évaluation des résultats et des processus en soins de santé › Évaluation de résultat (soins) › Évaluation des résultats des patients › Patient Experience of Systemic...