{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T04:41:45Z","timestamp":1790138505984,"version":"4.0.1"},"reference-count":36,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,3,24]],"date-time":"2025-03-24T00:00:00Z","timestamp":1742774400000},"content-version":"vor","delay-in-days":23,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["HemaSphere"],"published-print":{"date-parts":[[2025,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Advances in conditioning regimens have made non\u2010myeloablative allogeneic hematopoietic stem cell transplantation (HSCT) a viable curative option for adults with sickle cell disease (SCD). However, prospective studies comparing pre\u2010 and post\u2010transplant patient\u2010reported health outcomes are scarce. Therefore, in a prospective, mixed\u2010methods cohort study in adults with SCD undergoing HSCT, we tested the hypothesis that physical, mental, and social health improves after HSCT relative to baseline. We compared 9 Patient\u2010Reported Outcomes Measurement Information System (PROMIS\u00ae) measures at 6, 12, and 18 months post\u2010transplant to baseline and general population values. Semi\u2010structured interviews were conducted pre\u2010 and post\u2010transplant that were thematically analyzed (MAXQDA). Seventeen patients (7 females, 10 males; median age 26 years) underwent matched sibling (9) or haploidentical donor (8) transplantation. Compared to baseline, pain interference (<jats:italic>p<\/jats:italic>\u2009=\u20090.008), physical function (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001), fatigue (<jats:italic>p<\/jats:italic>\u2009=\u20090.001), anxiety (<jats:italic>p<\/jats:italic>\u2009=\u20090.016), anger (<jats:italic>p<\/jats:italic>\u2009=\u20090.037), and the ability to (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001) and satisfaction with (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001) social roles and activities improved at 18 months. Compared to reference values, physical function, sleep disturbance, fatigue, anxiety, and the ability to and satisfaction with social roles and activities <jats:italic>T<\/jats:italic>\u2010scores were significantly worse at baseline but comparable or better after 18 months. Thematic analysis of the interviews revealed high satisfaction with improved physical and social abilities alongside complex mental health challenges, including processing the psychological aftermath of SCD, dealing with transplant\u2010related toxicity, adjustment challenges, and identity conflicts. In conclusion, while physical, mental, and social health improves after HSCT, the effects on mental health can be complex and warrant psychosocial support early in the process of curative therapies.<\/jats:p>","DOI":"10.1002\/hem3.70100","type":"journal-article","created":{"date-parts":[[2025,3,25]],"date-time":"2025-03-25T03:37:09Z","timestamp":1742873829000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Changes in the quality of life of adults with sickle cell disease following allogeneic stem cell transplantation: A mixed\u2010methods, prospective cohort study"],"prefix":"10.1002","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0905-1907","authenticated-orcid":false,"given":"Elisabeth","family":"Dovern","sequence":"first","affiliation":[{"name":"Department of Hematology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sterre J. A. M.","family":"Nijland","sequence":"additional","affiliation":[{"name":"Department of Hematology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annemarie M. J.","family":"Braamse","sequence":"additional","affiliation":[{"name":"Department of Medical Psychology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maud M.","family":"van Muilekom","sequence":"additional","affiliation":[{"name":"Department of Child and Adolescent Psychiatry &amp; Psychosocial Care, Emma Children's Hospital Amsterdam UMC location University of Amsterdam  The Netherlands"},{"name":"Amsterdam Public Health, Mental Health and Personalized Medicine Amsterdam The Netherlands"},{"name":"Amsterdam Reproduction and Development, Child Development Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisabeth M. J.","family":"Suijk","sequence":"additional","affiliation":[{"name":"Department of Hematology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerianne M.","family":"Hoogendoorn","sequence":"additional","affiliation":[{"name":"Department of Hematology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte F. J.","family":"van Tuijn","sequence":"additional","affiliation":[{"name":"Department of Hematology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael R.","family":"DeBaun","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Vanderbilt\u2010Meharry Center of Excellence in Sickle Cell Disease Vanderbilt University Medical Center Nashville Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bart J.","family":"Biemond","sequence":"additional","affiliation":[{"name":"Department of Hematology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lotte","family":"Haverman","sequence":"additional","affiliation":[{"name":"Department of Child and Adolescent Psychiatry &amp; Psychosocial Care, Emma Children's Hospital Amsterdam UMC location University of Amsterdam  The Netherlands"},{"name":"Amsterdam Public Health, Mental Health and Personalized Medicine Amsterdam The Netherlands"},{"name":"Amsterdam Reproduction and Development, Child Development Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erfan","family":"Nur","sequence":"additional","affiliation":[{"name":"Department of Hematology Amsterdam UMC location University of Amsterdam Amsterdam The Netherlands"},{"name":"Department of Blood Cell Research Sanquin Research and Landsteiner Laboratory Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,3,24]]},"reference":[{"issue":"3","key":"e_1_2_10_2_1","doi-asserted-by":"crossref","first-page":"S28","DOI":"10.1016\/j.annemergmed.2020.08.009","article-title":"Trends in sickle cell disease\u2010related mortality in the United States, 1979 to 2017","volume":"76","author":"Payne AB","year":"2020","journal-title":"Ann Emerg Med"},{"issue":"23","key":"e_1_2_10_3_1","doi-asserted-by":"crossref","first-page":"1639","DOI":"10.1056\/NEJM199406093302303","article-title":"Mortality in sickle cell disease. Life expectancy and risk factors for early death","volume":"330","author":"Platt OS","year":"1994","journal-title":"N Engl J Med"},{"issue":"2","key":"e_1_2_10_4_1","doi-asserted-by":"crossref","first-page":"203","DOI":"10.1002\/ajh.21905","article-title":"Health\u2010related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium","volume":"86","author":"Dampier C","year":"2011","journal-title":"Am J Hematol"},{"issue":"12","key":"e_1_2_10_5_1","doi-asserted-by":"crossref","DOI":"10.1016\/j.jtct.2021.09.009","article-title":"Haploidentical allogeneic stem cell transplantation in sickle cell disease: a systematic review and meta\u2010analysis","volume":"27","author":"Aydin M","year":"2021","journal-title":"Transplant Cell Ther"},{"issue":"24","key":"e_1_2_10_6_1","doi-asserted-by":"crossref","first-page":"2309","DOI":"10.1056\/NEJMoa0904971","article-title":"Allogeneic hematopoietic stem\u2010cell 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