{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,24]],"date-time":"2026-07-24T06:53:57Z","timestamp":1784876037936,"version":"3.55.0"},"reference-count":21,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2025,1,3]],"date-time":"2025-01-03T00:00:00Z","timestamp":1735862400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"},{"start":{"date-parts":[[2025,1,3]],"date-time":"2025-01-03T00:00:00Z","timestamp":1735862400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Calcif Tissue Int"],"DOI":"10.1007\/s00223-024-01332-y","type":"journal-article","created":{"date-parts":[[2025,1,3]],"date-time":"2025-01-03T03:01:17Z","timestamp":1735873277000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["A Qualitative Approach to Quality of Life in Fibrous Bone Dysplasia \/McCune Albright Syndrome: Looking Beyond Quantitative Analysis"],"prefix":"10.1007","volume":"116","author":[{"given":"Juliette","family":"Jousse","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8794-9523","authenticated-orcid":false,"given":"Blandine","family":"Merle","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elodie","family":"Feurer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emmanuelle","family":"Vignot","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roland","family":"Chapurlat","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,1,3]]},"reference":[{"key":"1332_CR1","unstructured":"Reference centre of FD\/MAS (2022) PNDS : Dysplasie Fibreuse des os et syndrome de McCune-Albright. https:\/\/www.has-sante.fr\/upload\/docs\/application\/pdf\/2022-07\/pnds_dysplasie_fibreuse2022_vdef_has.pdf. Accessed Jun 2022"},{"issue":"1","key":"1332_CR2","doi-asserted-by":"publisher","first-page":"139","DOI":"10.1186\/s13023-019-1102-9","volume":"14","author":"MK Javaid","year":"2019","unstructured":"Javaid MK, Boyce A, Appelman-Dijkstra N, Ong J, Defabianis P, Offiah A, Arundel P, Shaw N, Pos VD, Underhil A, Portero D, Heral L, Heegaard AM, Masi L, Monsell F, Stanton R, Dijkstra PDS, Brandi ML, Chapurlat R, Hamdy NAT, Collins MT (2019) Best practice management guidelines for fibrous dysplasia\/McCune-Albright syndrome: a consensus statement from the FD\/MAS international consortium. Orphanet J Rare Dis 14(1):139. https:\/\/doi.org\/10.1186\/s13023-019-1102-9","journal-title":"Orphanet J Rare Dis"},{"issue":"7","key":"1332_CR3","doi-asserted-by":"publisher","first-page":"645","DOI":"10.1007\/s40273-016-0389-9","volume":"34","author":"M Karimi","year":"2016","unstructured":"Karimi M, Brazier J (2016) Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics 34(7):645\u2013649. https:\/\/doi.org\/10.1007\/s40273-016-0389-9","journal-title":"Pharmacoeconomics"},{"issue":"1","key":"1332_CR4","doi-asserted-by":"publisher","first-page":"61","DOI":"10.1186\/s41687-021-00336-8","volume":"5","author":"WR Lenderking","year":"2021","unstructured":"Lenderking WR, Anatchkova M, Pokrzywinski R, Skalicky A, Martin ML, Gelhorn H (2021) Measuring health-related quality of life in patients with rare disease. J Patient Rep Outcomes 5(1):61. https:\/\/doi.org\/10.1186\/s41687-021-00336-8","journal-title":"J Patient Rep Outcomes"},{"key":"1332_CR5","doi-asserted-by":"publisher","first-page":"927","DOI":"10.1177\/17423953211049436","volume":"4","author":"A Konradi","year":"2022","unstructured":"Konradi A (2022) Fibrous dysplasia patients with and without craniofacial involvement report reduced quality of life inclusive of stigma, depression, and anxiety. Chronic Illn 4:927\u2013936. https:\/\/doi.org\/10.1177\/17423953211049436","journal-title":"Chronic Illn"},{"issue":"1","key":"1332_CR6","doi-asserted-by":"publisher","first-page":"80","DOI":"10.1186\/s13023-017-0629-x","volume":"12","author":"BCJ Majoor","year":"2017","unstructured":"Majoor BCJ, Andela CD, Bruggemann J, van de Sande MAJ, Kaptein AA, Hamdy NAT, Dijkstra PDS, Appelman-Dijkstra NM (2017) Determinants of impaired quality of life in patients with fibrous dysplasia. Orphanet J Rare Dis 12(1):80. https:\/\/doi.org\/10.1186\/s13023-017-0629-x","journal-title":"Orphanet J Rare Dis"},{"issue":"3","key":"1332_CR7","doi-asserted-by":"publisher","first-page":"292","DOI":"10.1097\/IOP.0000000000001536","volume":"36","author":"M Hagelstein-Rotman","year":"2020","unstructured":"Hagelstein-Rotman M, Genders SW, Andela CD, Dijkstra S, Majoor BCJ, Notting IC, Hamdy NAT, Appelman-Dijkstra NM (2020) Patients With isolated craniofacial dysplasia report better quality of life compared with those with craniofacial dysplasia and extracranial involvement. Ophthalmic Plast Reconstr Surg 36(3):292\u2013297. https:\/\/doi.org\/10.1097\/IOP.0000000000001536","journal-title":"Ophthalmic Plast Reconstr Surg"},{"issue":"1","key":"1332_CR8","doi-asserted-by":"publisher","first-page":"439","DOI":"10.1186\/s13023-022-02588-z","volume":"17","author":"ME Meier","year":"2022","unstructured":"Meier ME, Hagelstein-Rotman M, van de Ven AC, Van der Geest ICM, Donker O, Pichardo SEC, Hissink Muller PCE, van der Meeren SW, Dorleijn DMJ, Winter EM, van de Sande MAJ, Appelman-Dijkstra NM (2022) A multidisciplinary care pathway improves quality of life and reduces pain in patients with fibrous dysplasia\/McCune-Albright syndrome: a multicenter prospective observational study. Orphanet J Rare Dis 17(1):439. https:\/\/doi.org\/10.1186\/s13023-022-02588-z","journal-title":"Orphanet J Rare Dis"},{"issue":"11","key":"1332_CR9","doi-asserted-by":"publisher","first-page":"104849","DOI":"10.1016\/j.ejmg.2023.104849","volume":"66","author":"MA Legrand","year":"2023","unstructured":"Legrand MA, Bagouet F, Merle B, Gensburger D, Chapurlat R (2023) Value of rare diseases reference centers\u202f: impact on diagnosis and access to specialized care in fibrous dysplasia of bone. Eur J Med Genet 66(11):104849. https:\/\/doi.org\/10.1016\/j.ejmg.2023.104849","journal-title":"Eur J Med Genet"},{"issue":"7000","key":"1332_CR10","doi-asserted-by":"publisher","first-page":"299","DOI":"10.1136\/bmj.311.7000.299","volume":"311","author":"J Kitzinger","year":"1995","unstructured":"Kitzinger J (1995) Qualitative research Introducing focus groups. BMJ (Clinical research ed) 311(7000):299\u2013302. https:\/\/doi.org\/10.1136\/bmj.311.7000.299","journal-title":"BMJ (Clinical research ed)"},{"key":"1332_CR11","volume-title":"SF36 Physical and mental health summary scales: a user\u2019s manual","author":"JE Ware","year":"1994","unstructured":"Ware JE et al (1994) SF36 Physical and mental health summary scales: a user\u2019s manual. Health Assessment Lab, New England Medical Center, Boston"},{"issue":"1","key":"1332_CR12","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1007\/s11136-012-0117-7","volume":"22","author":"SR Audureau","year":"2013","unstructured":"Audureau SR, Coste J (2013) Worsening trends and increasing disparities in health-related quality of life: evidence from two French population-based cross-sectional surveys, 1995\u20132003. Qual Life Res 22(1):13\u201326. https:\/\/doi.org\/10.1007\/s11136-012-0117-7","journal-title":"Qual Life Res"},{"issue":"4","key":"1332_CR13","doi-asserted-by":"publisher","first-page":"401","DOI":"10.1080\/17453674.2019.1608117","volume":"90","author":"BCJ Majoor","year":"2019","unstructured":"Majoor BCJ, Traunmueller E, Maurer-Ertl W, Appelman-Dijkstra NM, Fink A, Liegl B, Hamdy NAT, Sander Dijkstra PD, Leithner A (2019) Pain in fibrous dysplasia: relationship with anatomical and clinical features. Acta Orthop 90(4):401\u2013405. https:\/\/doi.org\/10.1080\/17453674.2019.1608117","journal-title":"Acta Orthop"},{"key":"1332_CR14","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-7-S1-S3","author":"RD Chapurlat","year":"2012","unstructured":"Chapurlat RD, Gensburger D, Jimenez-Andrade JM, Ghilardi JR, Kelly M, Mantyh P (2012) Pathophysiology and medical treatment of pain in fibrous dysplasia of bone. Orphanet J Rare Dis. https:\/\/doi.org\/10.1186\/1750-1172-7-S1-S3","journal-title":"Orphanet J Rare Dis"},{"issue":"5","key":"1332_CR15","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1007\/s00223-018-0441-1","volume":"103","author":"M Rotman","year":"2018","unstructured":"Rotman M, Andela CD, Majoo BCJ, Dijkstra PDS, Hamdy NAT, Kaptein AA, Appelman-Dijkstra NM (2018) Passive coping strategies are associated with more impairment in quality of life in patients with fibrous dysplasia. Calcif Tissue Int 103(5):469\u2013475. https:\/\/doi.org\/10.1007\/s00223-018-0441-1","journal-title":"Calcif Tissue Int"},{"issue":"1","key":"1332_CR16","doi-asserted-by":"publisher","first-page":"529","DOI":"10.1186\/s12913-017-2487-6","volume":"17","author":"M Benham-Hutchins","year":"2017","unstructured":"Benham-Hutchins M, Staggers N, Mackert M, Johnson AH, deBronkart D (2017) \u201cI want to know everything\u201d: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization. BMC Health Serv Res 17(1):529. https:\/\/doi.org\/10.1186\/s12913-017-2487-6","journal-title":"BMC Health Serv Res"},{"issue":"16","key":"1332_CR17","doi-asserted-by":"publisher","first-page":"1631","DOI":"10.1080\/09638288.2016.1209578","volume":"39","author":"A Olsen","year":"2016","unstructured":"Olsen A, Strand Skjaerven LH, Sundal MA, Magnussen LH (2016) Patient education and basic body awareness therapy in hip osteoarthritis \u2013 a qualitative study of patients\u2019 movement learning experiences. Disabil and Rehabil 39(16):1631\u20131638. https:\/\/doi.org\/10.1080\/09638288.2016.1209578","journal-title":"Disabil and Rehabil"},{"issue":"5","key":"1332_CR18","doi-asserted-by":"publisher","first-page":"1024","DOI":"10.1007\/s13187-018-1406-9","volume":"34","author":"M Lambourne","year":"2019","unstructured":"Lambourne M, Minard LV, Deal H, Pitman J, Rolle M, Saulnier D, Houlihan J (2019) Optimizing patient education of oncology medications: a patient perspective. J Cancer Educ 34(5):1024\u20131030. https:\/\/doi.org\/10.1007\/s13187-018-1406-9","journal-title":"J Cancer Educ"},{"issue":"1","key":"1332_CR19","doi-asserted-by":"publisher","first-page":"160","DOI":"10.1186\/s13023-016-0538-4","volume":"11","author":"L Forestier-Zhang","year":"2016","unstructured":"Forestier-Zhang L, Watts L, Turner A, Teare H, Kaye J, Barrett J, Cooper C, Eastell R, Wordsworth P, Javaid MK, Pinedo-Villanueva R (2016) Health-related quality of life and a cost-utility simulation of adults in the UK with osteogenesis imperfecta, X-linked hypophosphatemia and fibrous dysplasia. Orphanet J Rare Dis 11(1):160. https:\/\/doi.org\/10.1186\/s13023-016-0538-4","journal-title":"Orphanet J Rare Dis"},{"issue":"3","key":"1332_CR20","doi-asserted-by":"publisher","first-page":"388","DOI":"10.1016\/j.bone.2005.04.026","volume":"37","author":"MH Kelly","year":"2005","unstructured":"Kelly MH, Brillante B, Kushner H, Gehron Robey P, Collins MT (2005) Physical function is impaired but quality of life preserved in patients with fibrous dysplasia of bone. Bone 37(3):388\u2013394. https:\/\/doi.org\/10.1016\/j.bone.2005.04.026","journal-title":"Bone"},{"key":"1332_CR21","doi-asserted-by":"publisher","first-page":"116","DOI":"10.1186\/1477-7525-10-116","volume":"10","author":"U Ramaswami","year":"2012","unstructured":"Ramaswami U, Stull DE, Parini R, Pintos-Morell G, Whybra C, Kalkum G, Rohrbach M, Raluy-Callado M, Beck M, Chen WH, Wiklund I, FOS Investigators (2012) Measuring patient experiences in Fabry disease: validation of the Fabry-specific pediatric health and pain questionnaire (FPHPQ). Health Qual Life Outcomes 10:116. https:\/\/doi.org\/10.1186\/1477-7525-10-116","journal-title":"Health Qual Life Outcomes"}],"container-title":["Calcified Tissue International"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00223-024-01332-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00223-024-01332-y","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00223-024-01332-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,26]],"date-time":"2025-12-26T13:20:35Z","timestamp":1766755235000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00223-024-01332-y"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1,3]]},"references-count":21,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,12]]}},"alternative-id":["1332"],"URL":"https:\/\/doi.org\/10.1007\/s00223-024-01332-y","relation":{},"ISSN":["1432-0827"],"issn-type":[{"value":"1432-0827","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,3]]},"assertion":[{"value":"30 October 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 December 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"3 January 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"JJ, BM, EF, EV and RC declare no conflict of interest.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Disclosures"}},{"value":"All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and\/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The protocol was approved by the Commission Nationale de l\u2019Informatique et des Libert\u00e9s (CNIL) and was approved by a French ethics committee (CPP Ile de France n\u00b0 22.02251.000123 on 25\/8\/2022) and registered in ClinicalTrials.gov (NCT05406544).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical Approval"}},{"value":"All patients included in the study signed an informed consent and had the possibility to oppose the use of their anonymized data.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed Consent"}}],"article-number":"18"}}