{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,9]],"date-time":"2026-06-09T23:25:05Z","timestamp":1781047505303,"version":"3.54.1"},"reference-count":33,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-017"},{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-037"},{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-012"},{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-029"},{"start":{"date-parts":[[2024,4,1]],"date-time":"2024-04-01T00:00:00Z","timestamp":1711929600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-004"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Bone"],"published-print":{"date-parts":[[2024,4]]},"DOI":"10.1016\/j.bone.2024.117034","type":"journal-article","created":{"date-parts":[[2024,2,2]],"date-time":"2024-02-02T07:14:23Z","timestamp":1706858063000},"page":"117034","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":9,"special_numbering":"C","title":["Health-related quality of life and fatigue in adult rare bone disease patients: A cross-sectional study from Austria"],"prefix":"10.1016","volume":"181","author":[{"given":"Martina","family":"Behanova","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amadea","family":"Medibach","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith","family":"Haschka","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Kraus","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adalbert","family":"Raimann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gabriel T.","family":"Mindler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jochen","family":"Zwerina","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roland","family":"Kocijan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"10","key":"10.1016\/j.bone.2024.117034_bb0005","doi-asserted-by":"crossref","first-page":"2529","DOI":"10.1007\/s00198-015-3188-9","article-title":"Taxonomy of rare genetic metabolic bone disorders","volume":"26","author":"Masi","year":"2015","journal-title":"Osteoporos. Int."},{"issue":"4","key":"10.1016\/j.bone.2024.117034_bb0010","doi-asserted-by":"crossref","first-page":"1293","DOI":"10.1111\/os.12611","article-title":"Oral bisphosphonate therapy for osteogenesis imperfecta: a systematic review and meta-analysis of six randomized placebo-controlled trials","volume":"12","author":"Ying","year":"2020","journal-title":"Orthop. Surg."},{"issue":"7","key":"10.1016\/j.bone.2024.117034_bb0015","doi-asserted-by":"crossref","first-page":"1496","DOI":"10.1002\/jbmr.3143","article-title":"BPS804 anti-sclerostin antibody in adults with moderate osteogenesis imperfecta: results of a randomized phase 2a trial","volume":"32","author":"Glorieux","year":"2017","journal-title":"J. Bone Miner. Res."},{"issue":"7","key":"10.1016\/j.bone.2024.117034_bb0020","doi-asserted-by":"crossref","first-page":"1787","DOI":"10.1210\/clinem\/dgad035","article-title":"Approach to the patient: pharmacological therapies for fracture risk reduction in adults with osteogenesis imperfecta","volume":"108","author":"Liu","year":"2023","journal-title":"J. Clin. Endocrinol. Metab."},{"issue":"9","key":"10.1016\/j.bone.2024.117034_bb0025","doi-asserted-by":"crossref","DOI":"10.1002\/jbm4.10395","article-title":"Physical function and health-related quality of life in adults treated with asfotase alfa for pediatric-onset hypophosphatasia","volume":"4","author":"Genest","year":"2020","journal-title":"JBMR Plus"},{"key":"10.1016\/j.bone.2024.117034_bb0030","doi-asserted-by":"crossref","DOI":"10.1016\/j.bone.2020.115794","article-title":"Bone healing and reactivation of remodeling under asfotase alfa therapy in adult patients with pediatric-onset hypophosphatasia","volume":"143","author":"St\u00fcrznickel","year":"2021","journal-title":"Bone"},{"issue":"5","key":"10.1016\/j.bone.2024.117034_bb0035","doi-asserted-by":"crossref","first-page":"622","DOI":"10.1007\/s00223-020-00797-x","article-title":"Patient-reported outcomes from a randomized, active-controlled, open-label, phase 3 trial of burosumab versus conventional therapy in children with X-linked hypophosphatemia","volume":"108","author":"Padidela","year":"2021","journal-title":"Calcif. Tissue Int."},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0040","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1007\/s00198-020-05548-0","article-title":"Burden of disease associated with X-linked hypophosphataemia in adults: a systematic literature review","volume":"32","author":"Seefried","year":"2021","journal-title":"Osteoporos. Int."},{"issue":"8","key":"10.1016\/j.bone.2024.117034_bb0045","doi-asserted-by":"crossref","first-page":"669","DOI":"10.1007\/s001980070064","article-title":"Long-term risk of osteoporotic fracture in Malm\u00f6","volume":"11","author":"Kanis","year":"2000","journal-title":"Osteoporos. Int."},{"issue":"8","key":"10.1016\/j.bone.2024.117034_bb0050","doi-asserted-by":"crossref","first-page":"1635","DOI":"10.1007\/s00198-019-05000-y","article-title":"Longitudinal assessment of health-related quality of life in osteoporosis: data from the population-based Canadian Multicentre Osteoporosis Study","volume":"30","author":"Hopman","year":"2019","journal-title":"Osteoporos. Int."},{"issue":"12","key":"10.1016\/j.bone.2024.117034_bb0055","doi-asserted-by":"crossref","first-page":"2749","DOI":"10.1007\/s00198-012-2050-6","article-title":"Health-related quality of life in patients with osteoporosis in the absence of vertebral fracture: a systematic review","volume":"23","author":"Wilson","year":"2012","journal-title":"Osteoporos. Int."},{"issue":"10","key":"10.1016\/j.bone.2024.117034_bb0060","doi-asserted-by":"crossref","first-page":"2891","DOI":"10.1007\/s00198-016-3648-x","article-title":"Health-related quality of life in older people with osteoporotic vertebral fractures: a systematic review and meta-analysis","volume":"27","author":"Al-Sari","year":"2016","journal-title":"Osteoporos. Int."},{"issue":"11","key":"10.1016\/j.bone.2024.117034_bb0065","doi-asserted-by":"crossref","first-page":"1817","DOI":"10.1007\/s00198-009-1147-z","article-title":"Bone health and deterioration in quality of life among participants from the Hertfordshire cohort study","volume":"21","author":"Dennison","year":"2010","journal-title":"Osteoporos. Int."},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0070","doi-asserted-by":"crossref","first-page":"14","DOI":"10.1186\/s13023-021-02169-6","article-title":"Experienced fatigue in people with rare disorders: a scoping review on characteristics of existing research","volume":"17","author":"Bathen","year":"2022","journal-title":"Orphanet J. Rare Dis."},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0075","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1186\/s12891-019-3000-7","article-title":"Fatigue in adults with osteogenesis imperfecta","volume":"21","author":"Harsevoort","year":"2020","journal-title":"BMC Musculoskelet. Disord."},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0080","doi-asserted-by":"crossref","first-page":"157","DOI":"10.1007\/s00198-020-05537-3","article-title":"Physical function in UK adults with osteogenesis imperfecta: a cross-sectional analysis of the RUDY study","volume":"32","author":"Orlando","year":"2021","journal-title":"Osteoporos. Int."},{"issue":"7","key":"10.1016\/j.bone.2024.117034_bb0085","doi-asserted-by":"crossref","first-page":"1883","DOI":"10.1007\/s11136-020-02465-x","article-title":"Exploring the burden of X-linked hypophosphatemia: a European multi-country qualitative study","volume":"29","author":"Lo","year":"2020","journal-title":"Qual. Life Res."},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0090","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1186\/s13023-023-02620-w","article-title":"Patient-reported outcomes measures of X-linked hypophosphataemia participants: findings from a prospective cohort study in the UK","volume":"18","author":"Cole","year":"2023","journal-title":"Orphanet J. Rare Dis."},{"issue":"2","key":"10.1016\/j.bone.2024.117034_bb0095","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1007\/s00198-018-4691-6","article-title":"Neurological symptoms in Hypophosphatasia","volume":"30","author":"Colazo","year":"2019","journal-title":"Osteoporos. Int."},{"issue":"5","key":"10.1016\/j.bone.2024.117034_bb0100","doi-asserted-by":"crossref","first-page":"292","DOI":"10.1007\/s00038-005-4090-6","article-title":"The version 2.0 of the SF-36 Health Survey: results of a population-representative study","volume":"50","author":"Morfeld","year":"2005","journal-title":"Soz. Praventivmed."},{"issue":"10","key":"10.1016\/j.bone.2024.117034_bb0105","doi-asserted-by":"crossref","first-page":"1121","DOI":"10.1001\/archneur.1989.00520460115022","article-title":"The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus","volume":"46","author":"Krupp","year":"1989","journal-title":"Arch. Neurol."},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0110","doi-asserted-by":"crossref","first-page":"36","DOI":"10.1186\/s13023-023-02643-3","article-title":"Systematic review of health related-quality of life in adults with osteogenesis imperfecta","volume":"18","author":"Mc Donald","year":"2023","journal-title":"Orphanet J. Rare Dis."},{"issue":"3","key":"10.1016\/j.bone.2024.117034_bb0115","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1530\/EJE-15-0661","article-title":"Impaired quality of life in adults with X-linked hypophosphatemia and skeletal symptoms","volume":"174","author":"Che","year":"2016","journal-title":"Eur. J. Endocrinol."},{"issue":"11","key":"10.1016\/j.bone.2024.117034_bb0120","doi-asserted-by":"crossref","first-page":"2171","DOI":"10.1002\/jbmr.4130","article-title":"Burden of illness in adults with hypophosphatasia: data from the global hypophosphatasia patient registry","volume":"35","author":"Seefried","year":"2020","journal-title":"J. Bone Miner. Res."},{"key":"10.1016\/j.bone.2024.117034_bb0125","doi-asserted-by":"crossref","DOI":"10.3389\/fendo.2021.754084","article-title":"Lower limb deformity and gait deviations among adolescents and adults with X-linked hypophosphatemia","volume":"12","author":"Mindler","year":"2021","journal-title":"Front. Endocrinol. (Lausanne)"},{"key":"10.1016\/j.bone.2024.117034_bb0130","doi-asserted-by":"crossref","DOI":"10.3389\/fendo.2023.1111104","article-title":"The ankle in XLH: reduced motion, power and quality of life","volume":"14","author":"Akta","year":"2023","journal-title":"Front. Endocrinol. (Lausanne)"},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0135","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1186\/s13023-023-02620-w","article-title":"Patient-reported outcomes measures of X-linked hypophosphataemia participants: findings from a prospective cohort study in the UK","volume":"18","author":"Cole","year":"2023","journal-title":"Orphanet J. Rare Dis."},{"issue":"10","key":"10.1016\/j.bone.2024.117034_bb0140","doi-asserted-by":"crossref","first-page":"1522","DOI":"10.1016\/j.metabol.2016.07.006","article-title":"Burden of disease in adult patients with hypophosphatasia: results from two patient-reported surveys","volume":"65","author":"Weber","year":"2016","journal-title":"Metabolism"},{"key":"10.1016\/j.bone.2024.117034_bb0145","doi-asserted-by":"crossref","DOI":"10.3389\/fendo.2023.1138599","article-title":"Impact of muscular symptoms and\/or pain on disease characteristics, disability, and quality of life in adult patients with hypophosphatasia: a cross-sectional analysis from the Global HPP Registry","volume":"14","author":"Dahir","year":"2023","journal-title":"Front. Endocrinol. (Lausanne)"},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0150","doi-asserted-by":"crossref","first-page":"277","DOI":"10.1186\/s13023-022-02393-8","article-title":"Clinical profiles of treated and untreated adults with hypophosphatasia in the Global HPP Registry","volume":"17","author":"Dahir","year":"2022","journal-title":"Orphanet J. Rare Dis."},{"issue":"5","key":"10.1016\/j.bone.2024.117034_bb0155","doi-asserted-by":"crossref","first-page":"967","DOI":"10.1111\/j.1532-5415.2010.02811.x","article-title":"Bedside-to-Bench conference: research agenda for idiopathic fatigue and aging","volume":"58","author":"Alexander","year":"2010","journal-title":"J. Am. Geriatr. Soc."},{"issue":"1","key":"10.1016\/j.bone.2024.117034_bb0160","doi-asserted-by":"crossref","first-page":"67","DOI":"10.1177\/0898264317721825","article-title":"Longitudinal association between subjective fatigue and future falls in community-dwelling older adults: the locomotive syndrome and health outcomes in the Aizu Cohort Study (LOHAS)","volume":"31","author":"Kamitani","year":"2019","journal-title":"J. Aging Health"},{"key":"10.1016\/j.bone.2024.117034_bb0165","first-page":"200","article-title":"Impacts of psychological stress on osteoporosis: clinical implications and treatment interactions","volume":"10","author":"Kelly","year":"2019","journal-title":"Front. Psychol."}],"container-title":["Bone"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S8756328224000231?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S8756328224000231?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,8,6]],"date-time":"2025-08-06T15:22:43Z","timestamp":1754493763000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S8756328224000231"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,4]]},"references-count":33,"alternative-id":["S8756328224000231"],"URL":"https:\/\/doi.org\/10.1016\/j.bone.2024.117034","relation":{},"ISSN":["8756-3282"],"issn-type":[{"value":"8756-3282","type":"print"}],"subject":[],"published":{"date-parts":[[2024,4]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Health-related quality of life and fatigue in adult rare bone disease patients: A cross-sectional study from Austria","name":"articletitle","label":"Article Title"},{"value":"Bone","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.bone.2024.117034","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2024 Elsevier Inc. All rights reserved.","name":"copyright","label":"Copyright"}],"article-number":"117034"}}