Elisabeth Dovern, Sterre J. A. M. Nijland, Annemarie M. J. Braamse, Maud M. van Muilekom, Elisabeth M. J. Suijk, Gerianne M. Hoogendoorn, Charlotte F. J. van Tuijn, Michael R. DeBaun, Bart J. Biemond, Lotte Haverman, Erfan Nur
{"title":"同种异体干细胞移植后成人镰状细胞病患者生活质量的变化：一项混合方法、前瞻性队列研究","authors":"Elisabeth Dovern, Sterre J. A. M. Nijland, Annemarie M. J. Braamse, Maud M. van Muilekom, Elisabeth M. J. Suijk, Gerianne M. Hoogendoorn, Charlotte F. J. van Tuijn, Michael R. DeBaun, Bart J. Biemond, Lotte Haverman, Erfan Nur","doi":"10.1002/hem3.70100","DOIUrl":null,"url":null,"abstract":"<p>Advances in conditioning regimens have made non-myeloablative allogeneic hematopoietic stem cell transplantation (HSCT) a viable curative option for adults with sickle cell disease (SCD). However, prospective studies comparing pre- and post-transplant patient-reported health outcomes are scarce. Therefore, in a prospective, mixed-methods 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-Reported Outcomes Measurement Information System (PROMIS®) measures at 6, 12, and 18 months post-transplant to baseline and general population values. Semi-structured interviews were conducted pre- and post-transplant 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 (<i>p</i> = 0.008), physical function (<i>p</i> < 0.001), fatigue (<i>p</i> = 0.001), anxiety (<i>p</i> = 0.016), anger (<i>p</i> = 0.037), and the ability to (<i>p</i> < 0.001) and satisfaction with (<i>p</i> < 0.001) 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 <i>T</i>-scores 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-related 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.</p>","PeriodicalId":12982,"journal":{"name":"HemaSphere","volume":"9 3","pages":""},"PeriodicalIF":7.6000,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hem3.70100","citationCount":"0","resultStr":"{\"title\":\"Changes in the quality of life of adults with sickle cell disease following allogeneic stem cell transplantation: A mixed-methods, prospective cohort study\",\"authors\":\"Elisabeth Dovern, Sterre J. A. M. Nijland, Annemarie M. J. Braamse, Maud M. van Muilekom, Elisabeth M. J. Suijk, Gerianne M. Hoogendoorn, Charlotte F. J. van Tuijn, Michael R. DeBaun, Bart J. Biemond, Lotte Haverman, Erfan Nur\",\"doi\":\"10.1002/hem3.70100\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>Advances in conditioning regimens have made non-myeloablative allogeneic hematopoietic stem cell transplantation (HSCT) a viable curative option for adults with sickle cell disease (SCD). However, prospective studies comparing pre- and post-transplant patient-reported health outcomes are scarce. Therefore, in a prospective, mixed-methods 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-Reported Outcomes Measurement Information System (PROMIS®) measures at 6, 12, and 18 months post-transplant to baseline and general population values. Semi-structured interviews were conducted pre- and post-transplant 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 (<i>p</i> = 0.008), physical function (<i>p</i> < 0.001), fatigue (<i>p</i> = 0.001), anxiety (<i>p</i> = 0.016), anger (<i>p</i> = 0.037), and the ability to (<i>p</i> < 0.001) and satisfaction with (<i>p</i> < 0.001) 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 <i>T</i>-scores 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-related 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.</p>\",\"PeriodicalId\":12982,\"journal\":{\"name\":\"HemaSphere\",\"volume\":\"9 3\",\"pages\":\"\"},\"PeriodicalIF\":7.6000,\"publicationDate\":\"2025-03-24\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hem3.70100\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"HemaSphere\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/hem3.70100\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"HEMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"HemaSphere","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/hem3.70100","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEMATOLOGY","Score":null,"Total":0}
Changes in the quality of life of adults with sickle cell disease following allogeneic stem cell transplantation: A mixed-methods, prospective cohort study
Advances in conditioning regimens have made non-myeloablative allogeneic hematopoietic stem cell transplantation (HSCT) a viable curative option for adults with sickle cell disease (SCD). However, prospective studies comparing pre- and post-transplant patient-reported health outcomes are scarce. Therefore, in a prospective, mixed-methods 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-Reported Outcomes Measurement Information System (PROMIS®) measures at 6, 12, and 18 months post-transplant to baseline and general population values. Semi-structured interviews were conducted pre- and post-transplant 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 (p = 0.008), physical function (p < 0.001), fatigue (p = 0.001), anxiety (p = 0.016), anger (p = 0.037), and the ability to (p < 0.001) and satisfaction with (p < 0.001) 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 T-scores 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-related 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.
期刊介绍：
HemaSphere, as a publication, is dedicated to disseminating the outcomes of profoundly pertinent basic, translational, and clinical research endeavors within the field of hematology. The journal actively seeks robust studies that unveil novel discoveries with significant ramifications for hematology.
In addition to original research, HemaSphere features review articles and guideline articles that furnish lucid synopses and discussions of emerging developments, along with recommendations for patient care.
Positioned as the foremost resource in hematology, HemaSphere augments its offerings with specialized sections like HemaTopics and HemaPolicy. These segments engender insightful dialogues covering a spectrum of hematology-related topics, including digestible summaries of pivotal articles, updates on new therapies, deliberations on European policy matters, and other noteworthy news items within the field. Steering the course of HemaSphere are Editor in Chief Jan Cools and Deputy Editor in Chief Claire Harrison, alongside the guidance of an esteemed Editorial Board comprising international luminaries in both research and clinical realms, each representing diverse areas of hematologic expertise.
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