Quality of life and psychological distress of bone marrow transplant recipients: the ‘time trajectory’ to recovery over the first year

Abstract

Summary:The purpose of this study was to measure the trajectory of psychosocial recovery over the first year after bone marrow transplantation (BMT). BMT patients were assessed at baseline (n = 86), hospital discharge (n = 74), 100 days (n = 64) and at 1 year (n = 45). Participants completed the Functional Assessment of Cancer Therapy-Bone Marrow Transplant Scale (FACT-BMT), the Profile of Mood States Total Mood Disturbance Scale (POMS-TMDS), the Medical Outcomes Social Support Survey (MOS-SSS), the Center for Epidemiologic Studies-Depression (CES-D) scale screener, a performance Status Rating Scale (PSR), and an interview questionnaire. The recovery trajectory in this patient population showed three distinct trends. The trajectory for distress was linear and improved over time with approximately 20% of patients continuing to have psychological distress at 1 year. Secondly, the trend for overall quality of life was parabolic, worsening at discharge, then improving at 100 days and at 1 year. However, there were individual areas of deficit at follow-up, eg fatigue, even while overall quality of life mean scores improved. Thirdly, the trend for patient concerns over time was linear and worsening. These recovery trajectories suggest psychosocial interventions before and after BMT that may prepare patients for increasing and worsening concerns even as physical well-being improves. Keywords: quality of life; psychological distress; bone marrow transplantationThe psychological adaptation of bone marrow transplantation patients has been the subject of study for over 20 years.1 However, the first study indexed by the National Library of Medicine's Medline under both terms 'quality of life' and 'bone marrow transplantation' was published as recently as 1982.2 Case studies and clinical observations 1,3,4 have provided the impetus for post-transplant surveys designed to assess the psychological status and physical functioning of patients in cross-sectional, longitudinal stud- ies. [5][6][7][8][9][10][11][12] More recently, studies that employ a prospective longitudinal design measuring quality of life (QOL) both before and at multiple time points after transplantation have been utilized. [13][14][15][16] Several comprehensive reviews of the literature provide an overview of the numerous studies conducted to date. [17][18][19][20] Even with a developing consensus that post-BMT functioning can be satisfactory for most survivors, questions remain about how quickly patients recover a life of quality following BMT. For example, what concerns and problems do recipients experience in returning to normal during the 1 year time period post-BMT? 21,22 Our understanding of post-bone marrow transplant functioning has benefited greatly from surveys completed by patients following transplantation. However, patients who are assessed at variable time points months to years after transplantation do not represent a homogenous group. There is some evidence of a trajectory of recovery over the first year following transplantation. Patients may...

Having a sibling as donor: Patients' experiences immediately before allogeneic hematopoietic stem cell transplantation

“…The main factors associated with reduced QoL over time were significant infections, female gender and transplantation with stem cells from a sibling donor. The results of deteriorations in overall QoL and physical well-being from before until 100 days after HSCT is not surprising and in agreement with other studies (Bevans et al, 2006;Lee et al, 2006;McQuellon et al, 1998). The deteriorations found in physical well-being and social well-being from before until one year after HSCT agree with the results of other studies (Bevans et al, 2006;Lee et al, 2006;SchulzKindermann et al, 2007).…”

“…Emotional well-being improved over time for the patients in Study I, confirming the findings of earlier studies (Bevans et al, 2006;McQuellon et al, 1998). A likely explanation for this improvement is that patients are anxious about dying before the transplantation and afterwards are relieved to have survived the treatment.…”

“…The deteriorations found in physical well-being and social well-being from before until one year after HSCT agree with the results of other studies (Bevans et al, 2006;Lee et al, 2006;SchulzKindermann et al, 2007). However, the data conflict and yet other studies show improvements or no change in physical and social well-being (Bush et al, 2000;McQuellon et al, 1998;Pidala et al, 2009). …”

“…Most studies show that overall QoL deteriorates immediately after transplantation and stabilises or improves after three months (Bevans et al, 2006;Lee et al, 2006;McQuellon et al, 1998). Emotional well-being has been reported to be most impaired before and immediately after HSCT, but to improve quickly after the transplantation (Bevans et al, 2006;McQuellon et al, 1998).…”

“…Emotional well-being has been reported to be most impaired before and immediately after HSCT, but to improve quickly after the transplantation (Bevans et al, 2006;McQuellon et al, 1998). There are conflicting data regarding changes in physical and social well-being (Bevans et al, 2006;Lee et al, 2006;McQuellon et al, 1998).…”