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Author Notes:

Nitya Bakshi, Division of Pediatric Hematology-Oncology-BMT, Department of Pediatrics, Emory University, Atlanta, GA; Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA; 2015 Uppergate Drive, Atlanta, GA 30322, USA. Email: nitya.bakshi@emory.edu

The authors thank the patients and families who participated in the study. The authors acknowledge Anarosa Campos, Ashley Griffin, Sara Moore, Toi Dickson, and Divya Veludhandi for their assistance with this study. The authors would like to acknowledge the support and contributions from Children’s Healthcare of Atlanta and Emory University Pediatric Biostatistics Core. The authors thank the Mapi research trust for permission to use PedsQL™ measures. PedsQL™ contact information and permission to use: Mapi Research Trust, Lyon, France, https://eprovide.mapi-trust.org/. This study was supported by the National Heart, Lung and Blood Institute of the National Institutes of Health under award number 1K23HL140142 and 1K23HL140142-03S1 to Nitya Bakshi. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This study also received funding from the Abraham and J. Phyllis Katz Foundation by an award to Lakshmanan Krishnamurti. Soumitri Sil received funding from the National Heart, Lung and Blood Institute of the National Institutes of Health under award number K23HL133457. Asha Hurreh received support from the James T. Laney School of Graduate Studies—Summer Opportunity for Academic Research (SOAR) Program at Emory University.

The author(s) declare that they have no conflict of interest.

Subject:

Research Funding:

National Heart, Lung and Blood Institute of the National Institutes of Health, Grant/Award Numbers: 1K23HL140142, 1K23HL140142-03S1; Abraham and J. Phyllis Katz Foundation

Keywords:

  • Science & Technology
  • Life Sciences & Biomedicine
  • Oncology
  • Hematology
  • Pediatrics
  • pain
  • patient-reported outcomes
  • pediatric hematology
  • oncology
  • quality of life
  • sickle cell disease
  • transplantation
  • GENERIC CORE SCALES
  • QUALITY-OF-LIFE
  • PEDSQL(TM)
  • RELIABILITY
  • VALIDITY
  • FEASIBILITY
  • SENSITIVITY
  • RESPONSIVENESS
  • HEALTHY
  • MODULE

Multimodal phenotyping and correlates of pain following hematopoietic cell transplant in children with sickle cell disease

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Journal Title:

PEDIATRIC BLOOD & CANCER

Volume:

Volume 70, Number 1

Publisher:

, Pages e30046-e30046

Type of Work:

Article | Post-print: After Peer Review

Abstract:

Introduction: There is limited understanding of pain, patient-reported outcomes (PROs) of health-related quality of life (HRQoL), psychological factors, and experimental pain sensitivity before and following hematopoietic cell transplant (HCT) in children with sickle cell disease (SCD). Methods: Individuals aged 8 years and older, English speaking, and scheduled for a HCT were invited to participate in an observational study where they completed assessments of pain, PROs, psychological factors, and qualitative interviews before and around 3 months, 6 months, 1 year, and 2 years post-HCT. An optional substudy of experimental pain sensitivity before and around 6 month, 1 year, and 2 years post-HCT was also offered. Results: Data from eight participants (median age 13.5 years, 25% female) with sickle cell anemia (SCA) or similarly severe genotype, and successful donor-derived erythropoiesis post-HCT are reported. We found that collection of pain, PROs, psychological factors, and qualitative data were feasible in the context of HCT. We found moderate to large differences in pain and some PROs between baseline to 1 year and baseline to 2 year post-HCT based on effect sizes, but only some differences were statistically significant. We found moderate to large differences in pressure pain threshold and moderate differences in cold pain threshold between baseline to 1 year and baseline to 2 year post-HCT based on effect sizes, but these differences were not statistically significant. Qualitative data indicated an improvement in pain and HRQoL post-HCT. Conclusion: This study provides a framework for the conduct of multimodal pain assessments before and after HCT, which is feasible but faced with unique barriers.

Copyright information:

This is an Open Access work distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (https://creativecommons.org/licenses/by-nc-nd/4.0/).
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