Psychosocial Outcomes of Parents in Pediatric Haploidentical Transplant: Parental Hematopoietic Cell Donation As a Double-edged Sword

Overview

Journal Bone Marrow Transplant

Specialty General Surgery

Date 2022 Jan 10

PMID 35001081

Authors

Vanessa Aguilera

Megan R Schaefer

Kendra Parris

Alanna Long

Brandon Triplett

Sean Phipps

Affiliations

Soon will be listed here.

Abstract

Parents are increasingly used as donors for their child's haploidentical hematopoietic cell transplant, creating a dual role for parents that may increase the stress of caring for their ill child. Empiric research on the psychological adjustment of parental donors is lacking. We conducted a retrospective survey of parents (n = 136) whose child underwent transplant with a parental donor or a matched-unrelated donor, including both donor and nondonors, and both parents of survivors and bereaved. All parents completed standardized measures of quality of life, depression, anxiety, post-traumatic stress, and life satisfaction. Bereaved parents also completed measures of their grief response, while parents of survivors completed measures of the parent-child relationship. The overall sample reported psychological functioning near normative levels, but bereaved parents demonstrated significantly poorer outcomes across all measures. The effect of donor status differed by transplant outcome: for parents of survivors, donors reported better mental health than nondonors, but amongst bereaved parents, donors fared more poorly than nondonors. Bereaved donors reported greater difficulties with grief than nondonors. Results suggest that serving as donor can be a double-edged sword, acting as a protective factor when there is a successful outcome but a significant risk factor when the child does not survive.

References

Passweg J, Baldomero H, Bader P, Bonini C, Duarte R, Dufour C . Use of haploidentical stem cell transplantation continues to increase: the 2015 European Society for Blood and Marrow Transplant activity survey report. Bone Marrow Transplant. 2017; 52(6):811-817. PMC: 5467246. DOI: 10.1038/bmt.2017.34. View

Watanabe M, Kanda J . Recent progress in haploidentical transplantation: is this the optimal choice for alternative donor transplantation?. Curr Opin Hematol. 2019; 26(6):406-412. DOI: 10.1097/MOH.0000000000000532. View

Symons H, Zahurak M, Cao Y, Chen A, Cooke K, Gamper C . Myeloablative haploidentical BMT with posttransplant cyclophosphamide for hematologic malignancies in children and adults. Blood Adv. 2020; 4(16):3913-3925. PMC: 7448587. DOI: 10.1182/bloodadvances.2020001648. View

Locatelli F, Merli P, Pagliara D, Li Pira G, Falco M, Pende D . Outcome of children with acute leukemia given HLA-haploidentical HSCT after αβ T-cell and B-cell depletion. Blood. 2017; 130(5):677-685. DOI: 10.1182/blood-2017-04-779769. View

Mamcarz E, Madden R, Qudeimat A, Srinivasan A, Talleur A, Sharma A . Improved survival rate in T-cell depleted haploidentical hematopoietic cell transplantation over the last 15 years at a single institution. Bone Marrow Transplant. 2019; 55(5):929-938. PMC: 7202974. DOI: 10.1038/s41409-019-0750-7. View

Barrera M, Atenafu E, Doyle J, Berlin-Romalis D, Hancock K . Differences in mothers' and fathers' psychological distress after pediatric SCT: a longitudinal study. Bone Marrow Transplant. 2011; 47(7):934-9. DOI: 10.1038/bmt.2011.206. View

Packman W, Weber S, Wallace J, Bugescu N . Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review. Bone Marrow Transplant. 2010; 45(7):1134-46. DOI: 10.1038/bmt.2010.74. View

Lindwall J, Russell K, Huang Q, Zhang H, Vannatta K, Barrera M . Adjustment in parents of children undergoing stem cell transplantation. Biol Blood Marrow Transplant. 2014; 20(4):543-8. PMC: 3963285. DOI: 10.1016/j.bbmt.2014.01.007. View

Patterson J, Holm K, Gurney J . The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors. Psychooncology. 2004; 13(6):390-407. DOI: 10.1002/pon.761. View

10.

Katz L, Fladeboe K, King K, Gurtovenko K, Kawamura J, Friedman D . Trajectories of child and caregiver psychological adjustment in families of children with cancer. Health Psychol. 2018; 37(8):725-735. PMC: 6091867. DOI: 10.1037/hea0000619. View

11.

Howard Sharp K, Fisher R, Clark O, Dunnells Z, Murphy L, Prussien K . Long-term trajectories of depression symptoms in mothers of children with cancer. Health Psychol. 2019; 39(2):89-98. PMC: 7092691. DOI: 10.1037/hea0000826. View

12.

Dolgin M, Phipps S, Fairclough D, Sahler O, Askins M, Noll R . Trajectories of adjustment in mothers of children with newly diagnosed cancer: a natural history investigation. J Pediatr Psychol. 2007; 32(7):771-82. DOI: 10.1093/jpepsy/jsm013. View

13.

Klassen A, Klaassen R, Dix D, Pritchard S, Yanofsky R, ODonnell M . Impact of caring for a child with cancer on parents' health-related quality of life. J Clin Oncol. 2008; 26(36):5884-9. DOI: 10.1200/JCO.2007.15.2835. View

14.

Wakefield C, McLoone J, Evans N, Ellis S, Cohn R . It's more than dollars and cents: the impact of childhood cancer on parents' occupational and financial health. J Psychosoc Oncol. 2014; 32(5):602-21. DOI: 10.1080/07347332.2014.936653. View

15.

Ward J, Fogg L, Rodgers C, Breitenstein S, Kapoor N, Swanson B . Parent Psychological and Physical Health Outcomes in Pediatric Hematopoietic Stem Cell Transplantation. Cancer Nurs. 2018; 42(6):448-457. DOI: 10.1097/NCC.0000000000000652. View

16.

Manne S, Mee L, Bartell A, Sands S, Kashy D . A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation. J Consult Clin Psychol. 2016; 84(5):389-401. PMC: 5580924. DOI: 10.1037/ccp0000087. View

17.

Sahler O, Dolgin M, Phipps S, Fairclough D, Askins M, Katz E . Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: results of a multisite randomized clinical trial. J Clin Oncol. 2013; 31(10):1329-35. PMC: 3607672. DOI: 10.1200/JCO.2011.39.1870. View

18.

Gonzalez-Vicent M, Diaz Perez M . Allogeneic hematopoietic stem-cell transplantation from haploidentical donors using 'ex-vivo' T-cell depletion in pediatric patients with hematological malignancies: state of the art review. Curr Opin Oncol. 2018; 30(6):396-401. DOI: 10.1097/CCO.0000000000000480. View

19.

van Walraven S, Ball L, Koopman H, Switzer G, Ropes-de Jong C, De Jong A . Managing a dual role--experiences and coping strategies of parents donating haploidentical G-CSF mobilized peripheral blood stem cells to their children. Psychooncology. 2012; 21(2):168-75. DOI: 10.1002/pon.1885. View

20.

MacLeod K, Whitsett S, Mash E, Pelletier W . Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience. J Pediatr Psychol. 2003; 28(4):223-30. DOI: 10.1093/jpepsy/jsg010. View