Identifying quality of life domains and facets affected in relapsing polychondritis: a qualitative analysis for the development of a disease-specific health-related quality of life instrument.

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Title: Identifying quality of life domains and facets affected in relapsing polychondritis: a qualitative analysis for the development of a disease-specific health-related quality of life instrument.
Authors: Mertz P; Sorbonne université, Hôpital Tenon, DMU3ID APHP, ERN RITA, Paris, France.; Centre de référence des maladies auto-inflammatoires et de l'amylose inflammatoire (CEREMAIA), Paris, France.; Centre hospitalier de Versailles, le Chesnay, 78150, France., Sander O; Department for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany., Faria R; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal., Crisafulli F; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Silva-Ribeiro S; Instituto Universitário de Lisboa, Lisboa, Portugal., Kawka L; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France., Sztejkowski C; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France., Düsing C; Department for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany., Rose T; Klinik für Rheumatologie und Klinische Immunologie, Charité Universitätsmedizin Berlin, Charité Platz 1, 10117, Berlin, Germany., Lamas A; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal., Vasconcelos C; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal., Fontana G; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Semeraro P; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Neagu T; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Resteu M; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Damian L; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Pamfil C; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Bucsa C; ASPOR Association of Romanian Relapsing Polychondritis Patients & Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania., Matthews LJ; Relapsing Polychondritis Awareness & Support, (relapsingpolychondritis.org), Worcester, UK., Devilliers H; Internal Medicine and Systemic Diseases Unit, University Hospital Centre Dijon, Dijon, France., Rednic S; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Arnaud L; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France. Laurent.arnaud@chru-strasbourg.fr.
Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2026 Mar 11; Vol. 21 (1). Date of Electronic Publication: 2026 Mar 11.
Publication Type: Journal Article
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE
Database: MEDLINE Ultimate
Description
ISSN:1750-1172
DOI:10.1186/s13023-026-04297-3