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

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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 follow-up 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.

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