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Children experience skeletal abnormalities, pain and impaired health-related quality of life (HRQL). The FGF23 inhibitor burosumab improved growth, decreased rickets severity and improved symptoms and HRQL in paediatric phase 3 trials. Using a mixed-methods approach, the MyXLH study aims to describe the lived experience of adolescents with XLH and to compare the experiences of adolescents who did and did not continue burosumab for the 26\u2009weeks immediately after end of skeletal growth (EoSG), based on patient-reported daily activity, symptoms and HRQL, enriched with telephone interviews.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Twenty-five adolescents were enrolled (16 girls, 9 boys) at centres in France, Germany, the Netherlands, Spain and the UK. EoSG (confirmed mostly by growth velocity and\/or imaging) occurred at a mean (SD) age of 15.7 (1.3) years in girls and 17.2 (0.7) years in boys. Mean (SD) time on burosumab before EoSG was 4.3 (1.9) and 4.9 (2.6) years in those who continued and discontinued burosumab (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200916 and 9), respectively. In adolescents who continued burosumab, serum phosphate levels remained stable after EoSG. Scores for Worst Pain, Worst Stiffness and Worst Fatigue were low and changed little, and physical activity (daily step count) was maintained. Mean EuroQol 5-dimension, 3-level youth (EQ-5D-Y-3\u2009L) utility scores were 0.86 (0.24) before EoSG (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200915) and 0.77 (0.30) after (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20095). In interviews, these adolescents reported participating in school, physical and leisure activities; improvements in symptoms were linked to improved emotion. In adolescents who stopped burosumab at EoSG, phosphate levels decreased to below normal, scores for Worst Pain, Stiffness and Fatigue increased slightly (worse symptoms) but step count was broadly maintained. The mean (SD) EQ-5D-Y-3\u2009L utility score decreased from 0.94 (0.10) before EoSG (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20095) to 0.84 (0.15) (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20093) after. Some adolescents reported worsening or newly emergent symptoms and reduced participation in school\/work, physical and social activities.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Some adolescents experienced detrimental effects on serum phosphate and functional XLH symptoms after stopping burosumab at EoSG; continuation of burosumab beyond EoSG may therefore be warranted to maintain symptom control.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13023-026-04244-2","type":"journal-article","created":{"date-parts":[[2026,2,3]],"date-time":"2026-02-03T16:23:16Z","timestamp":1770135796000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Adolescents\u2019 experience of living with X-linked hypophosphataemia (XLH): a mixed-methods analysis of those who continued and discontinued burosumab treatment after end of skeletal growth"],"prefix":"10.1186","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3601-8942","authenticated-orcid":false,"given":"Vrinda","family":"Saraff","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pedro","family":"Arango-Sancho","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Justine","family":"Bacchetta","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annemieke M.","family":"Boot","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine P.","family":"Burren","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amish","family":"Chinoy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Poonam","family":"Dharmaraj","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Amelia","family":"G\u00f3mez Llorente","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juan David","family":"Gonz\u00e1lez Rodr\u00edguez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iva","family":"Gueorguieva","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wesley","family":"Hayes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dirk","family":"Schnabel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H\u00e9ctor R\u00edos","family":"Duro","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elin Haf","family":"Davies","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Komarzynski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela J.","family":"Rylands","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kerry","family":"Sandilands","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Haruka","family":"Ishii","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Williams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Santhani","family":"Selveindran","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adele","family":"Barlassina","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annabel","family":"Bowden","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Agn\u00e8s","family":"Linglart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,2,3]]},"reference":[{"issue":"1","key":"4244_CR1","doi-asserted-by":"publisher","first-page":"58","DOI":"10.1186\/s13023-019-1014-8","volume":"14","author":"SS Beck-Nielsen","year":"2019","unstructured":"Beck-Nielsen SS, Mughal Z, Haffner D, et al. 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Participant consent forms confirmed consent for the use of anonymized quotes.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"VS\n                      has received speaker fees, meeting attendance support and research fees from Kyowa Kirin, and support for meeting attendance from Alexion and Sandoz.\n                      JB\n                      has received speaker fees and research fees from Kyowa Kirin.\n                      AMB\n                      has received a research grant and consulting and speaker fees from Kyowa Kirin, all paid to her institution.\n                      CPB\n                      has received speaker fees and meeting attendance support from Kyowa Kirin.\n                      AC\n                      has received speaker fees from Kyowa Kirin.\n                      JDGR\n                      has received speaker fees from Kyowa Kirin and contributed to the company\u2019s clinical reports.\n                      IG\n                      has received consulting fees and meeting attendance support from Kyowa Kirin and has taken part in an advisory board for the company;\n                      EHD\n                      holds stocks\/stock options with Aparito Ltd and Eli Lilly& Co.\n                      WH\n                      has received a Research for Patient Benefit Grant from the National Institute for Health and Care Research.\n                      DS\n                      has received consulting fees and meeting attendance support from Kyowa Kirin and is president of the German Society for Pediatric and Adolescent Endocrinology and Diabetology.\n                      SK\n                      holds stock\/stock options with Eli Lilly & Co.\n                      AJR\n                      ,\n                      KS\n                      and\n                      AW\n                      are employed by Kyowa Kirin.\n                      HI\n                      is employed by Kyowa Kirin and holds stock in the company.\n                      AB\n                      is employed by Spire Outcomes Ltd, which received fees from Kyowa Kirin for evidence synthesis and medical writing.\n                      AL\n                      has received consulting fees and honoraria from Novo Nordisk, Merck, Biomarin and Pfizer; speaker and research fees from Kyowa Kirin (paid to her institution); and meeting attendance support from Sandoz. She has participated in advisory\/data safety monitoring boards for Alexion and Novo Nordisk.\n                      PAS, PD, MAGL, HRD\n                      and\n                      SS\n                      have no disclosures.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interest"}}],"article-number":"107"}}