{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T22:21:16Z","timestamp":1777933276288,"version":"3.51.4"},"reference-count":50,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2018,10,8]],"date-time":"2018-10-08T00:00:00Z","timestamp":1538956800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100014865","name":"Fondation Maladies Rares","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100014865","id-type":"DOI","asserted-by":"crossref"}]},{"name":"IRIHS"},{"DOI":"10.13039\/501100005897","name":"Soci\u00e9t\u00e9 Fran\u00e7aise de Dermatologie et de Pathologie Sexuellement Transmissible","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100005897","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Qual Health Res"],"published-print":{"date-parts":[[2019,5]]},"abstract":"<jats:p>This qualitative study conducted in France of \u201cindividuals living with a pemphigus\u201d (ILPs; N = 54) highlights the taxing diagnostic trajectory of those suffering from these rare autoimmune diseases. Beyond enduring a diagnostic period that may prove long, during their numerous medical appointments, these individuals internalize the expectations of the medical professionals who are treating them. In some cases, numerous inconclusive medical tests and, at times, a doctor\u2019s condescension may push the patient toward a process of renunciation. This article relates the ILPs\u2019 critiques of the medical work conducted during the trying diagnostic period.<\/jats:p>","DOI":"10.1177\/1049732318803590","type":"journal-article","created":{"date-parts":[[2018,10,8]],"date-time":"2018-10-08T23:36:15Z","timestamp":1539041775000},"page":"889-899","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":12,"title":["Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic"],"prefix":"10.1177","volume":"29","author":[{"given":"Yannick","family":"Le H\u00e9naff","sequence":"first","affiliation":[{"name":"Universit\u00e9 de Rouen Normandie, Mont-Saint-Aignan, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"St\u00e9phane","family":"H\u00e9as","sequence":"additional","affiliation":[{"name":"Universit\u00e9 de Rennes 2, Rennes, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pascal","family":"Joly","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Rouen University Hospital and INSERM U905, Centre de r\u00e9f\u00e9rence des maladies bulleuses autoimmunes, Normandie University, Rouen"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2018,10,8]]},"reference":[{"key":"bibr1-1049732318803590","volume-title":"Erradiag, l\u2019errance diagnostique dans les maladies rares","author":"Alliance Maladies Rares","year":"2016"},{"key":"bibr2-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1177\/104973230201200202"},{"key":"bibr3-1049732318803590","unstructured":"Association Pemphigus Pemphigo\u00efde France. (2015). Le fardeau socio-m\u00e9dico-\u00e9conomique des maladies bulleuses auto-immunes [Social, medical and economical burden in bulous autoimmune diseases]. Retrieved from http:\/\/pemphigus.asso.fr\/files\/LE_FARDEAU___MBAI_2015_2.pdf"},{"key":"bibr4-1049732318803590","doi-asserted-by":"publisher","DOI":"10.3917\/rfse.001.0027"},{"key":"bibr5-1049732318803590","doi-asserted-by":"publisher","DOI":"10.3917\/eres.hirsc.2010.02.0310"},{"key":"bibr6-1049732318803590","volume-title":"Good days, bad days: The self in chronic illness and time","author":"Charmaz K. C.","year":"1991"},{"key":"bibr7-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00515-4"},{"key":"bibr8-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2005.06.018"},{"key":"bibr9-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(96)00404-2"},{"key":"bibr10-1049732318803590","volume-title":"The voice of 12,000 patients: Experiences and expectations of rare disease patients on diagnosis and care in Europe","author":"EurordisCare3","year":"2009"},{"key":"bibr11-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315570116"},{"key":"bibr12-1049732318803590","volume-title":"The discovery of grounded theory: Strategies for qualitative research","author":"Glaser B. G.","year":"1967"},{"key":"bibr13-1049732318803590","first-page":"357","volume":"49","author":"Godet V.","year":"2001","journal-title":"Revue d\u2019Epid\u00e9miologie et de Sant\u00e9 Publique"},{"key":"bibr14-1049732318803590","first-page":"4","volume-title":"Erradiag, l\u2019errance diagnostique dans les maladies rares","author":"Grunfeld J. P.","year":"2016"},{"key":"bibr15-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1177\/1049732310369914"},{"key":"bibr16-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315578400"},{"key":"bibr17-1049732318803590","doi-asserted-by":"publisher","DOI":"10.3917\/corp1.015.0153"},{"key":"bibr18-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0190-9622(00)90213-5"},{"key":"bibr19-1049732318803590","doi-asserted-by":"crossref","DOI":"10.2307\/jj.18253805.13","volume-title":"The struggle for recognition: The moral grammar of social conflicts","author":"Honneth A.","year":"1995"},{"key":"bibr20-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.2008.01143.x"},{"key":"bibr21-1049732318803590","first-page":"138","volume-title":"Pain as a human experience: An anthropological perspective","author":"Jackson J. E.","year":"1992"},{"key":"bibr22-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2003.02663.x"},{"key":"bibr23-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.a209"},{"key":"bibr24-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/j.annder.2011.01.004"},{"key":"bibr25-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.2008.01152.x"},{"key":"bibr26-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2011.07.014"},{"key":"bibr27-1049732318803590","volume-title":"L\u2019entretien compr\u00e9hensif [Comprehensive interview]","author":"Kaufmann J. C.","year":"1996"},{"key":"bibr28-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1177\/1049732314566326"},{"key":"bibr29-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(99)00240-3"},{"key":"bibr30-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.a180"},{"key":"bibr31-1049732318803590","doi-asserted-by":"publisher","DOI":"10.3917\/jgem.145.0389"},{"key":"bibr32-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00479-3"},{"key":"bibr33-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1111\/j.1471-6712.2004.00258.x"},{"key":"bibr34-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-3999(00)00168-9"},{"key":"bibr35-1049732318803590","doi-asserted-by":"publisher","DOI":"10.5172\/hesr.2011.20.1.28"},{"key":"bibr36-1049732318803590","first-page":"2","volume":"96","author":"Moreau N.","year":"2014","journal-title":"L\u2019information dentaire"},{"key":"bibr37-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1177\/1049732310369139"},{"key":"bibr38-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2008.01.012"},{"key":"bibr39-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2005.07.030"},{"key":"bibr40-1049732318803590","volume-title":"The social system","author":"Parsons T.","year":"1951"},{"key":"bibr41-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(97)00200-1"},{"key":"bibr42-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(98)00418-3"},{"key":"bibr43-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2133.1999.02612.x"},{"key":"bibr44-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1177\/1049732313519868"},{"key":"bibr45-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra061111"},{"key":"bibr46-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2007.05.016"},{"key":"bibr47-1049732318803590","volume-title":"Basics of qualitative research: Techniques and procedures for developing grounded theory","author":"Strauss A.","year":"1998"},{"key":"bibr48-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1080\/14034950510033372"},{"key":"bibr49-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1525\/m.1992.6.4.02a00030"},{"key":"bibr50-1049732318803590","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00520-8"}],"updated-by":[{"DOI":"10.1177\/1049732320935081","type":"correction","label":"Correction","source":"publisher","updated":{"date-parts":[[2020,6,12]],"date-time":"2020-06-12T00:00:00Z","timestamp":1591920000000}}],"container-title":["Qualitative Health Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1049732318803590","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1049732318803590","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1049732318803590","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,2]],"date-time":"2026-05-02T01:44:37Z","timestamp":1777686277000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1049732318803590"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,10,8]]},"references-count":50,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2019,5]]}},"alternative-id":["10.1177\/1049732318803590"],"URL":"https:\/\/doi.org\/10.1177\/1049732318803590","relation":{},"ISSN":["1049-7323","1552-7557"],"issn-type":[{"value":"1049-7323","type":"print"},{"value":"1552-7557","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,10,8]]}}}