Sage Journals: Discover world-class research

Abstract

Objective: Pediatric hematopoietic stem cell transplantation (HCT) has the potential to improve health-related quality of life (HRQOL) for youth and young adults (YYAs) with malignant and non-malignant conditions. Yet, it is an intense process with changing health care needs and long-term effects. Historically underrepresented individuals may face unique challenges, thus their perspective can identify areas for improved education and care. The aim of this study was to identify gaps in knowledge about HCT and factors affecting post-HCT HRQOL from the point-of-view of a sociodemographically and medically diverse group of YYAs and their caregivers. Methods: A convenience sample of YYAs post-HCT were enrolled from an urban hospital. YYAs and/or their caregivers participated in semi-structured interviews (assessing their understanding of HCT and current issues affecting YYA’s HRQOL). Interviews were audio-recorded, transcribed, and analyzed using content analysis. Results: YYAs (N = 17; M current age = 15.9 ± 5.2 years-old; M age during HCT = 12.8 ± 6.2; 58.8% male; 52.9% non-White) with malignant (41.1%) and non-malignant (58.2%) conditions were enrolled. Eleven YYAs and twelve caregivers (50% mothers) participated in interviews. Overall, participants reported high levels of understanding of the HCT process (informed by their health care team and the Internet). Yet, they expressed that knowing about HCT was very different from experiencing HCT firsthand. Challenges most affecting YYA’s current HRQOL were related to fertility and hormones, emotional health, social interactions, and academics. Conclusions: Participants reported feeling well-informed about HCT. Yet, they also experienced challenges related to HCT and post-HCT HRQOL, highlighting important areas for continued education and intervention.

Implications for Impact Statement

Youth, young adults (YYAs), and their caregivers undergoing HCT receive information about the process from their health care teams and the Internet. Despite feeling well informed, they are still surprised by aspects of HCT and the treatment’s continued impact on their health-related quality of life. After HCT, YYAs experienced difficulties related to fertility and hormones, mental health, peer relationships, and school.

Keywords

hematopoietic stem cell transplantation pediatrics patient education health-related quality of life diversity

Get full access to this article

View all access options for this article.

References

Barnbrock

Hamannt

Salzmann-Manrique

Rohm

Lange

Bader

Jarisch

(2023). Look at the future -perceptions of fertility counseling and decision-making among adolescents and their parents in the context of hematopoietic stem cell transplantation—Experience of one major center for pediatric stem cell transplantation. Frontiers in Pediatrics, 11, 1249558. https://doi.org/10.3389/fped.2023.1249558

Bevans

El-Jawahri

Tierney

D. K.

Wiener

Wood

W. A.

Hoodin

Kent

E. E.

Jacobsen

P. B.

Lee

S. J.

Hsieh

M. M.

Denzen

E. M.

Syrjala

K. L.

(2017). National Institutes of Health hematopoietic cell transplantation late effects initiative: The patient-centered outcomes working group report. Biology of Blood and Marrow Transplantation: Journal of the American Society for Blood and Marrow Transplantation, 23(4), 538–551. https://doi.org/10.1016/j.bbmt.2016.09.011

Bhatia

Kolva

Cimini

Jin

Satwani

Savone

George

Garvin

Paz

M. L.

Briamonte

Cruz-Arrieta

Sands

(2015). Health-related quality of life after allogeneic hematopoietic stem cell transplantation for sickle cell disease. Biology of Blood and Marrow Transplantation: Journal of the American Society for Blood and Marrow Transplantation, 21(4), 666–672. https://doi.org/10.1016/j.bbmt.2014.12.007

Bhatt

N. S.

Shipman

K. J.

Rosenberg

A. R.

Jenssen

K. M.

Ballard

S. A.

Baker

K. S.

Barton

K. S.

(2023). Barriers and facilitators of the return‐to‐school process affecting adolescent recipients of allogeneic hematopoietic cell transplantation: A qualitative interview study of caregivers. Pediatric Blood and Cancer, 70(9), Article e30510. https://doi.org/10.1002/pbc.30510

Brice

Gilroy

Dyer

Kabir

Greenwood

Larsen

Moore

Kwan

Hertzberg

Brown

Hogg

Huang

Tan

Ward

Gottlieb

Kerridge

(2017). Haematopoietic stem cell transplantation survivorship and quality of life: Is it a small world after all? Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 25(2), 421–427. https://doi.org/10.1007/s00520-016-3418-5

Di Giuseppe

Thacker

Schechter

Pole

J. D.

(2020). Anxiety, depression, and mental health-related quality of life in survivors of pediatric allogeneic hematopoietic stem cell transplantation: A systematic review. Bone Marrow Transplantation, 55(7), 1240–1254. https://doi.org/10.1038/s41409-020-0782-z

Hsieh

H. F.

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687

Kanate

A. S.

Majhail

DeFilipp

Dhakal

Dholaria

Hamilton

Herrera

A. F.

Inamoto

Jain

Perales

M. A.

Carpenter

P. A.

Hamadani

(2023). Updated indications for immune effector cell therapy: 2023 guidelines from the American Society for Transplantation and Cellular Therapy. Transplantation and Cellular Therapy, 29(10), 594–597. https://doi.org/10.1016/j.jtct.2023.07.002

Karst

J. S.

Hoag

J. A.

Chan

S. F.

Schmidt

D. J.

Anderson

L. J.

Englebert

N. E.

Igler

E. C.

Bingen

K. M.

(2018). Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families. Pediatric Blood and Cancer, 65(8), Article e27109. https://doi.org/10.1002/pbc.27109

10.

Kazak

A. E.

Swain

A. M.

Pai

A. L. H.

Canter

Carlson

Vega

Joffe

Deatrick

(2020). Caregiver perspectives on psychosocial care in pediatric hematopoietic stem cell transplantation (Hct). Clinical Practice in Pediatric Psychology, 8(1), 67–78. https://doi.org/10.1037/cpp0000278

11.

Kaziunas

Hanauer

D. A.

Ackerman

M. S.

Choi

S. W.

(2016). Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation. Journal of the American Medical Informatics Association, 23(1), 94–104. https://doi.org/10.1093/jamia/ocv116

12.

Kelly

M. J.

Pennarola

B. W.

Rodday

A. M.

Parsons

S. K.

Journeys to Recovery Study, HSCT-CHESS™ Study . (2012). Health-related quality of life (HRQL) in children with sickle cell disease and thalassemia following hematopoietic stem cell transplant (HSCT). Pediatric Blood and Cancer, 59(4), 725–731. https://doi.org/10.1002/pbc.24036

13.

Liang

Pan

Xie

Fan

Zhai

Liang

Zhang

Lai

(2022). Health-related quality of life in pediatric patients with β-thalassemia major after hematopoietic stem cell transplantation. Bone Marrow Transplantation, 57(7), 1108–1115. https://doi.org/10.1038/s41409-022-01663-0

14.

Liu

Y.-M.

Jaing

T.-H.

Wen

Y.-C.

Chen

S.-H.

Weng

P.-Y.

Lin

C.-L.

(2021). Health-related quality of life predicts length of hospital stay and survival rates for pediatric patients receiving allogeneic hematopoietic cell transplantation. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 30(12), 3421–3430. https://doi.org/10.1007/s11136-021-02887-1

15.

Microsoft Corporation . (2018). Microsoft Excel. https://office.microsoft.com/excel

16.

Oberg

J. A.

Bender

J. G.

Morris

Harrison

Basch

C. E.

Garvin

J. H.

Sands

S. A.

Cairo

M. S.

(2013). Pediatric allo-SCT for malignant and non-malignant diseases: impact on health-related quality of life outcomes. Bone Marrow Transplantation, 48(6), 787–793. https://doi.org/10.1038/bmt.2012.217

17.

Pai

A. L. H.

Swain

A. M.

Chen

F. F.

Hwang

W. T.

Vega

Carlson

Ortiz

F. A.

Canter

Joffe

Kolb

E. A.

Davies

S. M.

Chewning

J. H.

Deatrick

Kazak

A. E.

(2019). Screening for family psychosocial risk in pediatric hematopoietic stem cell transplantation with the psychosocial assessment tool. Biology of Blood and Marrow Transplantation: Journal of the American Society for Blood and Marrow Transplantation, 25(7), 1374–1381. https://doi.org/10.1016/j.bbmt.2019.03.012

18.

Pidala

Anasetti

Jim

(2010). Health-related quality of life following haematopoietic cell transplantation: Patient education, evaluation and intervention. British Journal of Haematology, 148(3), 373–385. https://doi.org/10.1111/j.1365-2141.2009.07992.x

19.

Pope

Mays

(2006). Qualitative methods in health research. In Pope

Mays

(Eds.), Qualitative research in health care (3rd ed., pp. 1–11). Blackwell Publishing; BMJ Books. https://doi.org/10.1002/9780470750841.ch1

20.

Ramirez

L. G.

Louisias

Ogbogu

P. U.

Stinson

Gupta

Sansweet

Singh

Jones

B. L.

Nyenhuis

S. M.

(2024). Understanding health equity in patient-reported outcomes. The journal of allergy and clinical immunology: in practice, 12(10), 2617–2624. https://doi.org/10.1016/j.jaip.2024.04.023

21.

Robles

J. M.

Troy

J. D.

Schroeder

K. M.

Martin

P. L.

LeBlanc

T. W.

(2021). Parental limited English proficiency in pediatric stem cell transplantation: Clinical impact and health care utilization. Pediatric Blood and Cancer, 68(9), Article e29174. https://doi.org/10.1002/pbc.29174

22.

Seto

Atsuta

Kawashima

Ozawa

Miyamura

Kiyoi

(2018). Impact of hospital length of stay on the risk of readmission and overall survival after allogeneic stem cell transplantation. International Journal of Hematology, 108(3), 290–297. https://doi.org/10.1007/s12185-018-2477-4

23.

Steinberg

D. M.

Mulinda

Castaño

DiCola

Tanenbaum

M. L.

Onderwyzer Gold

Beauchemin

M. P.

Bhatia

(2025). “Being alone for a whole year [is hard]”: Families reflect on the emotional toll of stem cell transplantation for sickle cell disease. Journal of Pediatric Psychology, 50(2), 187–196. https://doi.org/10.1093/jpepsy/jsae101

24.

Tong

Sainsbury

Craig

(2007). Consolidated criteria for reporting qualitative research (Coreq): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042

25.

Wiener

Devine

K. A.

Thompson

A. L.

(2020). Advances in pediatric psychooncology. Current Opinion in Pediatrics, 32(1), 41–47. https://doi.org/10.1097/MOP.0000000000000851

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.10 MB

The Lived Experience of Pediatric Hematopoietic Stem Cell Transplantation: Pre-HCT Understanding and Post-HCT Health-Related Quality of Life

Abstract

Implications for Impact Statement

Keywords

Get full access to this article

References

Supplementary Material