Long-term follow-up of informal caregivers after allo-SCT: a systematic review

Abstract

Currently, more than 40 000 patients undergo allogeneic hematopoietic SCT (HSCT) annually throughout the world, and the numbers are increasing rapidly. Long-term survival after allogeneic-HSCT (allo-HSCT) has also improved significantly since its inception over 40 years ago due to improved supportive care and early recognition of long-term complications. In long-term followup after transplantation, the focus of care moves beyond cure of the original disease to late effects and quality of life. Nearly onefourth of the long-term survivors are likely to have chronic consequences of HSCT, which require frequent help by caregivers, particularly informal caregivers such as spouses, partners or children. The physical and psychosocial consequences for patients undergoing HSCT have been extensively reported. There has, however, been far less investigation into the long-term follow-up of caregivers of HSCT recipients. This article provides an overview on addressing caregiver issues after HSCT. The rapidly growing population of long-term HSCT survivors creates an obligation not only to educate patients and physicians about the late complications observed in patients but also to follow up caregivers for their psychosocial support needs.

An evidence-based stress management intervention for allogeneic hematopoietic stem cell transplant caregivers: development, feasibility and acceptability

“…Challenges in recovering from the transplant procedure extend well beyond the 100-day caregiving requirement [10]. Patients can experience transplant-related or disease-related complications in the months or years following transplant, including GvHD, disease recurrence, or multiple infections.…”

“…Caregivers must remain healthy themselves to prevent disease transmission to their patients. Long after the HSCT procedure is complete, patients and caregivers must remain vigilant for posttransplant complications and recurrent disease leading to persistent caregiver distress [10]. Thus, support for transplant caregivers is important for psychosocial and physical wellbeing of the caregiver/patient dyad.…”

The Caregiver’s Role Across the Bone Marrow Transplantation Trajectory

“…12,13 Researchers have also noted that committed partner/spouse caregivers often experience increased levels of depression and anxiety 9,11 and less dyadic satisfaction 9,12 and that caregiving may impact their ability to work, resulting in financial concerns.…”

“…In addition, an understanding of the experiences of the caregiver role across the entire BMT trajectory is needed to identify appropriate interventions to assist caregivers in their role. 11 The main objective of this article is to report data from the perspective of the committed partner/spouse caregiver that will lead to a better understanding of the BMT experience across the early trajectory.…”

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

“…Since being a caregiver for a spouse undergoing HSCT is a heavy burden there is a need of further research and follow-up regarding the psychosocial support needs of caregivers (Wulff-Burchfield et al, 2013).…”