ORIGINAL ARTICLE Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents L Jalmsell 1,2 , E Onelo¨v 3 , G Steineck 3 , J-I Henter 1 and U Kreicbergs 1,4 1 Childhood Cancer Research Unit, Department of Women’s and Children’s Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden; 2 Department of Surgery, Oncology Unit, Visby Hospital, Visby, Sweden; 3 Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden and 4 Sophiahemmet University College, Stockholm, Sweden We have investigated whether hematopoietic stem cell transplantation (HSCT) before the death of children with cancer has a long-term effect on the physical and psychological well-being of the parents. A nationwide questionnaire was sent out to all bereaved parents in Sweden who had lost a child due to a malignancy from 1992 to 1997. Self-reported levels of anxiety, depression and quality of life as well as overall psychological and physical well-being in bereaved parents of children who underwent HSCT were compared with bereaved parents whose children did not receive a transplant. Bereaved parents whose children underwent HSCT had, according to a visual digital scale, an increased relative risk (RR) of long-term anxiety (RR 1.5; 95% confidence interval (CI) 1.0–2.1), poor psychological well-being (RR1.3; 95% CI 1.1–1.5), low quality of life (RR 1.4; 95% CI 1.2–1.7) and poor physical health (RR 1.3; 95% CI 1.1–1.5), whereas the State-Trait Anxiety Inventory and ‘The Go¨teborg Quality of Life Instrument’ were non-significantly increased (RR 1.3; 95% CI 0.8–2.3 and RR 1.7; 95% CI 0.9–3.3, respectively). The risks of these consequences were further augmented in case of multiple HSCT. We suggest that bereaved parents of children undergoing HSCT may be at greater risk of decreased psychological well-being than other bereaved parents of children with cancer. Bone Marrow Transplantation (2011) 46, 1063–1070; doi:10.1038/bmt.2010.287; published online 22 November 2010 Keywords: hematopoietic stem cell transplantation; bereaved parents; morbidity Introduction Hematopoietic stem cell transplant (HSCT) in children may be extremely stressful not only for the child, but also for the parents of that child. 1–3 In addition to interventions like radio- and chemo-therapy, some children must also endure HSCT, which entails repeated procedures, pain and isolation. It has previously been reported that the child’s illness and treatment have an important role in the parents’ lives for many years. 1 Similarly, it has been reported that a malignancy in a child affects the well-being of the parents negatively in the early phase of the disease. 4 Furthermore, we have previously reported an increased risk of anxiety and depression among bereaved parents compared with non-bereaved parents 4–6 years after the loss of a child with cancer. 5 Drew et al. 6 have reported results from an Australian single institution study of 56 bereaved parents of children treated for malignancies, 28 of whom had had a child treated with HSCT and 28 experienced no HSCT treat- ment. Increased anxiety, depression and stress were reported in parents whose child had undergone HSCT. A literature review on parental stress before, during and after pediatric HSCT revealed that the highest levels of parental stress were reported in the period preceding HSCT and during the acute phase and that stress levels decrease steadily after discharge in most parents, although stress levels still remained elevated post-HSCT in a subgroup of parents. 3 Very recently, Wolfe and colleagues reported on a large study comprising 141 children who died of cancer, and they concluded that HSCT is associated with significant suffering and less opportunity to prepare for end-of-life. 7 Larger samples and studies with longer follow-up may help us to understand whether bereaved parents of children treated with HSCT may be at a greater risk of psycholo- gical and physical morbidity than other bereaved parents in the long-term perspective. The aim of the present study was to assess the long-term psychological consequences in parents whose child had had a HSCT due to his or her malignancy before death. Materials and methods Participants The national study reported here, including parents whose child died from a malignancy between the years 1992 and Received 11 May 2010; revised 27 September 2010; accepted 27 September 2010; published online 22 November 2010 Correspondence: Dr U Kreicbergs, Childhood Cancer Research Unit Q6:05, Department of Women’s and Children’s Health, Karolinska Institutet, Karolinska University Hospital, Stockholm SE-171 76, Sweden. E-mail: Ulrika.Kreicbergs@ki.se Bone Marrow Transplantation (2011) 46, 1063–1070 & 2011 Macmillan Publishers Limited All rights reserved 0268-3369/11 www.nature.com/bmt