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Quality of Life of Sickle Cell Disease Patients After Hematopoietic Stem Cell Transplantation: a Longitudinal Study

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Abstract

Hematopoietic stem cell transplantation (HSCT) is one available curative treatment for sickle cell disease (SCD). The process of deciding in favor or against the procedure encompasses several factors, including the prospect of improving long-term quality of life (QoL). The present study aimed to assess the QoL indexes of adult patients with SCD who underwent allogeneic HSCT. In this descriptive, exploratory, cross-sectional study, patients were assessed before and at 1 and 2 years after transplantation, by the Generic Questionnaire for Quality of Life Assessment (SF-36). For each of the eight components of SF-36, the differences between assessments at each time point (pre-HSCT, 1 year, and 2 years) were compared. The population was composed of 14 patients (nine males) with a mean age of 28.07 years. The results showed significant increase in all eight components of the SF-36 in the three time points compared, evidencing that even long-term after the procedure, the QoL continues to increase. The physical components of SF-36 improved since the first year post-HSCT. Important variables for the preservation of QoL were detected: not having developed GVHD, being gainfully employed, and having more than 8 years of schooling. Importantly, there was also a delayed but significant increase in the mental component of SF-36, here shown as unprecedented data. These results reaffirm that it is worth investing in HSCT for sickle cell patients.

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Data Availability

The data sets generated during and/or analyzed during the ongoing study are not publicly available due to ethical issues but are available from the corresponding author upon reasonable request.

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Funding

This research was funded by Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES).

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Authors and Affiliations

  1. Faculdade de Filosofia, Ciências E Letras da Universidade de São Paulo, Rua Terezina 529, São Paulo, Brazil

    Lucas dos Santos Lotério, Érika Arantes de Oliveira-Cardoso, Juliana Tomé Garcia & Manoel Antônio dos Santos

  2. Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto – Universidade de São Paulo, São Paulo, Brazil

    Belinda Pinto Simões, Maria Carolina de Oliveira, Ana Luisa Carvalho Guimarães, Karla Costa Pereira, Thalita Cristina Melo Costa & Renato Luiz Guerino Cunha

Authors
  1. Lucas dos Santos Lotério
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  2. Érika Arantes de Oliveira-Cardoso
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  3. Belinda Pinto Simões
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  4. Maria Carolina de Oliveira
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  5. Juliana Tomé Garcia
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  6. Ana Luisa Carvalho Guimarães
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  7. Karla Costa Pereira
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  8. Thalita Cristina Melo Costa
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  9. Renato Luiz Guerino Cunha
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  10. Manoel Antônio dos Santos
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Contributions

Lucas dos Santos Loterio was the principal researcher, responsible for collecting data and preparing the manuscript, during his master’s degree. Érika Arantes de Oliveira-Cardoso was the researcher–advisor, contributing to the conduction of the research and preparing the manuscript. Belinda Pinto Simões and Maria Carolina de Oliveira were the heads of the departments where the research was conducted and allowed it to happen, as well as participating in the writing and revision of the manuscript. Juliana Tomé Garcia and Ana Luisa Guimarães assisted in data collection. Karla, Thalita, Renato, and Manoel participated in the revision of the manuscript.

Corresponding author

Correspondence to Lucas dos Santos Lotério.

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Ethics Approval

The project was approved by the Research Ethics Committee of the Faculty of Philosophy, Sciences and Letters of Ribeirão Preto (FFCLRP-USP), on an Ordinary Meeting, on August 24th, 2017, CAAE nº 72589517.7.0000.5407.

Consent to Participate

All participants agreed to participate voluntarily in the survey and signed written consent forms with the knowledge that they could leave the study at any time without any harm in their treatment.

Consent for Publication

The consent forms the participants signed also informed them that the data collected could be published for educational purposes.

Conflict of Interest

The authors declare no competing interests.

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dos Santos Lotério, L., de Oliveira-Cardoso, É.A., Simões, B.P. et al. Quality of Life of Sickle Cell Disease Patients After Hematopoietic Stem Cell Transplantation: a Longitudinal Study. Trends in Psychol. 30, 513–527 (2022). https://doi.org/10.1007/s43076-021-00132-9

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