PMID- 37051746
OWN - NLM
STAT- MEDLINE
DCOM- 20230525
LR  - 20240228
IS  - 1545-5017 (Electronic)
IS  - 1545-5009 (Print)
IS  - 1545-5009 (Linking)
VI  - 70
IP  - 7
DP  - 2023 Jul
TI  - Parental perspective on the risk of infertility and fertility preservation 
      options for children and adolescents with sickle cell disease considering 
      hematopoietic stem cell transplantation.
PG  - e30276
LID - 10.1002/pbc.30276 [doi]
AB  - BACKGROUND: Allogeneic hematopoietic stem cell transplantation (HCT) performed in 
      children from human leukocyte antigen (HLA)-identical related donors is 
      associated with very high survival rates and disease-free survival. Patients are 
      exposed to gonadotoxic alkylating agents or irradiation in the HCT conditioning 
      regimen. Consequently, infertility is a major long-term complication of HCT for 
      sickle cell disease (SCD). We sought to understand how caregivers perceive the 
      risk of infertility from HCT, how they perceive the options for fertility 
      preservation, and how this risk perception impacted their decision-making to 
      pursue HCT. PROCEDURES: We conducted qualitative interviews with primary 
      caregivers after a consultation for HCT for SCD. Data were analyzed using 
      descriptive qualitative analysis. RESULTS: We interviewed 19 primary caregivers 
      who had attended a consultation with an HCT physician (female, age 25-59 [median 
      39] years). Eleven participants reported that their child had an available 
      HLA-matched donor. Analysis revealed that (i) mothers were worried about death 
      and graft-versus-host disease from HCT, more than about the risk of infertility; 
      (ii) parents have a realistic understanding of the risk of infertility after HCT 
      and take it into consideration in decision-making; (iii) parents report multiple 
      barriers to fertility preservation. CONCLUSION: For parents actively considering 
      HCT for their child with SCD, the risk of infertility while important was not a 
      barrier to pursuing HCT. Inconvenience and invasiveness of fertility preservation 
      procedures are some of the barriers to pursuing fertility preservation for their 
      child. Future research must aim at addressing these barriers to fertility 
      preservation.
CI  - (c) 2023 Wiley Periodicals LLC.
FAU - Sinha, Cynthia B
AU  - Sinha CB
AD  - Department of Pediatric Hematology-Oncology-BMT, Emory University, Atlanta, 
      Georgia, USA.
FAU - Meacham, Lillian R
AU  - Meacham LR
AD  - Department of Pediatric Hematology-Oncology-BMT, Emory University, Atlanta, 
      Georgia, USA.
AD  - Aflac Cancer and Blood Disorders, Children's healthcare of Atlanta, Atlanta, 
      Georgia, USA.
FAU - Bakshi, Nitya
AU  - Bakshi N
AUID- ORCID: 0000-0002-0876-9506
AD  - Department of Pediatric Hematology-Oncology-BMT, Emory University, Atlanta, 
      Georgia, USA.
AD  - Aflac Cancer and Blood Disorders, Children's healthcare of Atlanta, Atlanta, 
      Georgia, USA.
FAU - Ross, Diana
AU  - Ross D
AD  - Department of Pediatric Hematology-Oncology-BMT, Emory University, Atlanta, 
      Georgia, USA.
FAU - Krishnamurti, Lakshmanan
AU  - Krishnamurti L
AUID- ORCID: 0000-0003-3242-0037
AD  - Yale Pediatric Hematology & Oncology, Yale School of Medicine, New Haven, 
      Connecticut, USA.
LA  - eng
GR  - K23 HL140142/HL/NHLBI NIH HHS/United States
GR  - OT2 HL152762/HL/NHLBI NIH HHS/United States
GR  - U01 HL128566/HL/NHLBI NIH HHS/United States
PT  - Journal Article
PT  - Research Support, N.I.H., Extramural
DEP - 20230413
PL  - United States
TA  - Pediatr Blood Cancer
JT  - Pediatric blood & cancer
JID - 101186624
SB  - IM
MH  - Humans
MH  - Child
MH  - Female
MH  - Adolescent
MH  - Adult
MH  - Middle Aged
MH  - *Fertility Preservation/methods
MH  - *Hematopoietic Stem Cell Transplantation/methods
MH  - *Graft vs Host Disease
MH  - *Anemia, Sickle Cell
MH  - *Infertility
MH  - Parents
MH  - Transplantation Conditioning/methods
PMC - PMC10544372
MID - NIHMS1930718
OTO - NOTNLM
OT  - fertility preservation
OT  - gene therapy
OT  - hematology
OT  - hematopoietic stem cell transplantation
OT  - medical decision-making
OT  - pediatric
OT  - risk of infertility
OT  - sickle cell disease
EDAT- 2023/04/14 06:00
MHDA- 2023/05/25 06:42
PMCR- 2024/07/01
CRDT- 2023/04/13 03:53
PHST- 2023/01/20 00:00 [revised]
PHST- 2022/06/10 00:00 [received]
PHST- 2023/02/08 00:00 [accepted]
PHST- 2024/07/01 00:00 [pmc-release]
PHST- 2023/05/25 06:42 [medline]
PHST- 2023/04/14 06:00 [pubmed]
PHST- 2023/04/13 03:53 [entrez]
AID - 10.1002/pbc.30276 [doi]
PST - ppublish
SO  - Pediatr Blood Cancer. 2023 Jul;70(7):e30276. doi: 10.1002/pbc.30276. Epub 2023 
      Apr 13.