PMID- 37638835
OWN - NLM
STAT- MEDLINE
DCOM- 20230926
LR  - 20231007
IS  - 1545-5017 (Electronic)
IS  - 1545-5009 (Linking)
VI  - 70
IP  - 11
DP  - 2023 Nov
TI  - Long-term parental distress after pediatric hematopoietic stem cell 
      transplantation for nonmalignant diseases.
PG  - e30638
LID - 10.1002/pbc.30638 [doi]
AB  - BACKGROUND: Survival rates have continued to increase for pediatric hematopoietic 
      stem cell transplantation (HSCT) for nonmalignant diseases. Despite the crucial 
      role of caregivers in this high-intensity treatment, knowledge about long-term 
      parental impact is lacking. PROCEDURE: This cross-sectional study assessed 
      parental distress and everyday problems in parents of patients 2 years and older 
      after pediatric HSCT for a nonmalignant disease using Distress Thermometer for 
      Parents (DT-P), and compared outcomes to matched Dutch parents of healthy 
      children and Dutch parents of children with a chronic condition (CC). RESULTS: 
      Median follow-up was 5.3 years (interquartile range [IQR]: 2.9-8.6). Underlying 
      diseases were inborn errors of immunity (N = 30), hemoglobinopathies (N = 13), 
      and bone marrow failure (N = 27). Mothers of pediatric HSCT recipients (N = 70) 
      reported comparable overall distress levels to mothers of healthy children, but 
      experienced more distress related to parenting problems, specifically managing 
      their child's emotions, discussing disease consequences, and fostering 
      independence. Fathers of HSCT recipients (N = 45) reported higher overall 
      distress levels and had more emotional distress compared to fathers of healthy 
      children. CONCLUSIONS: Overall, parental distress and everyday problems of 
      parents of HSCT recipients are comparable to those of parents of children with 
      CC. However, there is ongoing parental burden, both emotional and in parenting, 
      long-term after HSCT compared to parents of healthy children, and the type of 
      burden differs between mothers and fathers. These results indicate that 
      individualized parental supportive care should not remain restricted to the acute 
      hospitalization phase, but also be actively offered during long-term follow-up 
      after pediatric HSCT.
CI  - (c) 2023 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.
FAU - Bense, Joell E
AU  - Bense JE
AUID- ORCID: 0000-0002-7939-334X
AD  - Department of Pediatrics, Division of Stem Cell Transplantation, Willem-Alexander 
      Children's Hospital, Leiden University Medical Center, Leiden, The Netherlands.
FAU - Stiggelbout, Anne M
AU  - Stiggelbout AM
AD  - Department of Biomedical Data Sciences, Medical Decision Making, Leiden 
      University Medical Center, Leiden, The Netherlands.
AD  - Erasmus School of Health Policy and Management, Erasmus University Rotterdam, 
      Leiden, The Netherlands.
FAU - Lankester, Arjan C
AU  - Lankester AC
AD  - Department of Pediatrics, Division of Stem Cell Transplantation, Willem-Alexander 
      Children's Hospital, Leiden University Medical Center, Leiden, The Netherlands.
FAU - de Pagter, Anne P J
AU  - de Pagter APJ
AD  - Department of Pediatrics, Division of Stem Cell Transplantation, Willem-Alexander 
      Children's Hospital, Leiden University Medical Center, Leiden, The Netherlands.
LA  - eng
PT  - Journal Article
DEP - 20230828
PL  - United States
TA  - Pediatr Blood Cancer
JT  - Pediatric blood & cancer
JID - 101186624
SB  - IM
MH  - Humans
MH  - Child
MH  - Female
MH  - Cross-Sectional Studies
MH  - *Parents
MH  - Mothers
MH  - Parenting
MH  - *Hematopoietic Stem Cell Transplantation
OTO - NOTNLM
OT  - hematopoietic stem cell transplantation
OT  - late effects
OT  - long-term follow-up
OT  - parental distress
OT  - parental outcomes
OT  - pediatric
EDAT- 2023/08/28 12:42
MHDA- 2023/09/26 13:43
CRDT- 2023/08/28 10:03
PHST- 2023/08/09 00:00 [revised]
PHST- 2023/03/15 00:00 [received]
PHST- 2023/08/11 00:00 [accepted]
PHST- 2023/09/26 13:43 [medline]
PHST- 2023/08/28 12:42 [pubmed]
PHST- 2023/08/28 10:03 [entrez]
AID - 10.1002/pbc.30638 [doi]
PST - ppublish
SO  - Pediatr Blood Cancer. 2023 Nov;70(11):e30638. doi: 10.1002/pbc.30638. Epub 2023 
      Aug 28.