Numerous contemporary advances within the specialty of hematopoietic stem cell transplantation (HSCT) are responsible for improved survival rates and the expanded use of this treatment modality.1 Early post-transplant sequelae have been studied, resulting in awareness that the majority of survivors return to pre-transplant norms within 1 year following transplant.2,3 However, some survivors experience residual deficits that impede performance and overall functioning years after transplantation. This population has not been rigorously studied.
In 2015, the National Institute of Health sponsored an initiative to summarize the existing evidence base on the late effects of hematopoietic stem cell transplantation. Six working groups reviewed the literature on health-related quality of life in pediatric and adult survivors more than 1 year post-transplant.4 The results were compiled into 6 domains: physical, psychological, social, environmental, treatment adherence, and health behaviors. The top major findings included the following4:
• Females experienced nearly twice the rate of sexual dysfunction than males
• One quarter of survivors experienced pain, most of which was associated with chronic graft-versus-host-disease (GVHD)
• Enduring fatigue was present in 35% to 42% of survivors
• Most adult survivors recover cognitive function within 1 year post-transplant; however, mild impairment may persist up to 5 years post-HCST
• 15% to 40% do not return to their previous employment
• Through at least 2 years post-HSCT, spousal caregivers experience more anxiety, depression, and social isolation than their HSCT recipient
• Post-traumatic stress disorder in parents of children undergoing HSCT has been reported, with mothers experiencing worse symptoms than population norms
• 1 year or more post-HSCT, 73% of survivors have significant financial toxicity despite health insurance benefits
• Although medication adherence (especially with immunosuppressants) has not been extensively studied, there is reason to suggest that non-adherence is considerable and worsens as the survivorship trajectory lengthens
• Knowledge about the prominence of risky lifestyle behaviors (ie, smoking, drinking, use of sun protection) and health-promoting behaviors (ie, physical activity, healthy diet) in HSCT survivors is extremely limited and requires future investigative focus
Data on intervention efficacy have similarly targeted early survivorship post-HSCT. Randomized controlled trials of exercise, mind-body practices, stress management, and cognitive behavioral therapy have demonstrated modest improvements in the reduction of symptom distress.4 The authors recommended HSCT-specific survivor programs that address non-adherence, manage GVHD and sexual dysfunction, and promote healthy lifestyle behaviors. They also advised that the autologous and allogeneic transplant populations be investigated separately and that centers achieve consensus on the use of standardized measurement instruments to facilitate comparison of findings.
Due to the aggressive nature of HSCT, patients receiving this care require close scrutiny post-transplant. This is best served when baseline measurement of the many variables influencing quality of life is gathered, followed by ongoing data collection necessary to better understand symptom patterns, treatment efficacy, and the unfolding of risk factors beyond early survivorship.
1. Gifford G, Sim J, Horne A, Ma D. Health status, late effects and long-term survivorship of allogeneic bone marrow transplantation: A retrospective study. Int Med J. 2014;44:139-47.
2. Mosher CE, Redd WH, Rini CM, et al. Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: A review of the literature. Psycho-Oncol. 2009;18:113-27.
3. Pidala J, Anasetti C, Jim H. Quality of life after allogeneic hematopoietic cell transplantation. Blood. 2009;114:7-19.
4. Bevans M, El-Jawarhri A, Tierney DK et al. National Institutes of Health hematopoietic cell transplantation late effects initiative. Biol Blood Marrow Transplant. 2017;23:538-51.