Quality of Life of Caregivers of Hematopoietic Cell Transplant Recipients

• Published in: Biology of blood and marrow transplantation Vol. 24; no. 11; pp. 2271 - 2276
• Main Authors: Jamani, Kareem, Onstad, Lynn E., Bar, Merav, Carpenter, Paul A., Krakow, Elizabeth F., Salit, Rachel B., Flowers, Mary E.D., Lee, Stephanie J.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.11.2018
• Subjects: Adolescent; Adult; Aged; Aged, 80 and over; Caregiver; Caregivers - psychology; Family caregiver; Female; Hematopoietic cell transplant; Hematopoietic Stem Cell Transplantation - psychology; Humans; Informal caregiver; Male; Middle Aged; Quality of life; Quality of Life - psychology; Transplantation Conditioning - psychology; Young Adult; Informal caregiver; Family caregiver; Hematopoietic cell transplant; Caregiver; Quality of life
• ISSN: 1083-8791; 1523-6536
• DOI: 10.1016/j.bbmt.2018.06.015

•Nearly 20% of caregivers report poor quality of life versus the general population.•Age, gender, and education are important predictors of caregiver quality of life.•Depression and sleep disorder are more common in caregivers versus the general population. Caregivers are critical to recipient recovery after hematopoietic cell transplant (HCT); however, little is known about their long-term health and quality of life (QoL). In this study we surveyed 4446 caregiver–recipient pairs in the post-HCT period to describe their QoL and its determinants. In total, 849 caregiver–recipient pairs at a median of 6 years after autologous or allogeneic HCT responded. Among 849 responding caregivers at a median of 6 years post-HCT, 67% of caregivers were women and 68% indicated they were still providing care to the recipient. Mean and median QoL measures of caregivers were at or above general population norms; however, approximately 20% of caregivers reported poor QoL relative to general population norms. Multivariate analysis revealed that caregiver characteristics, including age, gender, and educational attainment, were important determinants of caregiver QoL. Additional determinants of caregiver QoL included recipient QoL, relapse after autologous HCT, and ongoing use of immunosuppression after allogeneic HCT. Additionally, the prevalence of depression and sleep disorders appear to be higher in caregivers than in the general population. We have identified a population of caregivers who may benefit from interventions aimed at improving QoL and health outcomes. HCT clinical practice should also consider caregiver well-being.