Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature

The number of hematopoietic stem cell transplant (HSCT) survivors is rapidly increasing, as more than 45 000 people receive HSCT annually throughout the world [1]. The term HSCT encompasses bone marrow transplants (BMT), stem cell transplants (SCT) from peripheral blood or umbilical cord blood, and mini/light procedures (with lower toxicity) that are used primarily for hematologic and lymphoid cancers, and also for many other disorders [1]. HSCT involves an initial regimen of high doses of chemotherapy and/or radiation followed by infusions of stem cells to reestablish hematopoietic function. During the initial regimen patients’ lymphocytes are destroyed, and the subsequent transplant attempts to restore immune function. During this time the low lymphocyte count may reach the ‘nadir’, the lowest count, and the person is at great risk for infections, which could be lethal. Although the introduction of novel agents and the use of peripheral blood stem cells instead of bone marrow have improved HSCT outcomes [2], about 40% of advanced cancer patients who undergo allogeneic HSCT die from complications related to the transplant [1]. This review focuses on patients’ quality of life following two types of HSCT—allogeneic and autologous transplantation. Allogeneic transplantation uses donor stem cells and therefore may be associated with graft-versus-host disease (GVHD), which involves attacks by donor T lymphocytes on the patient's organs and the potential for severe complications. Autologous transplantation uses the patient's own stem cells; therefore, there is no GHVD risk. For nearly two decades researchers have examined the quality of life of HSCT recipients [3], including the effects of transplantation on physical function, psychological status, social interactions, and economic and/or vocational status. In this review we examine all of these domains of quality of life following HSCT and conceptualize the patient's life-threatening disease and transplantation as a psychosocial transition. According to Parkes [4], a psychosocial transition is a major life experience that requires individuals ‘to restructure [their] ways of looking at the world and [their] plans for living in it’ (p. 102). Psychosocial transitions can potentially result in simultaneous positive and negative outcomes for the same individual as his or her world view evolves to accommodate the stressful event [4,5]. For example, an HSCT patient may experience career disruption and existential distress and simultaneously experience renewed relationships and a greater appreciation of life. Concurrent reports of personal growth and deficits in physical, social, and emotional well-being among HSCT survivors are consistent with the transition paradigm [5,6]. This review of quality of life following HSCT is limited to articles published from January 2002 to October 2007, though some earlier publications are mentioned. We focus on these more recent studies because they are more likely than older studies to reflect changes in HSCT protocols and because they are generally more methodologically rigorous than earlier studies. Articles were identified through a search of PsycINFO using the following keywords: (bone marrow or stem cell) and transplant$.1 MEDLINE searches also included the following keywords: psycho$, quality of life, fatigue, or sexual. Use of the terms (mini or light or partial or tandem) and transplant$ in combination with the above-mentioned keywords did not result in any relevant publications. Further pertinent studies were found through searches of reference lists in published articles. The database searches yielded 1513 results, and we reviewed the titles, abstracts, and, if necessary, the full papers in order to extract articles that focused on quality of life, fatigue, sexuality, or distress outcomes (e.g. global distress or mood, negative affect, depressive or anxious symptoms) in adult HSCT survivors. We found 22 articles that met our criteria (see Table 1). Table 1 Prospective investigations of quality of life following hematopoietic stem cell transplantation Articles presented in Table 1 had to (1) be published in the English language, (2) include at least one assessment prior to transplant and one assessment after transplant, and (3) include at least 20 participants at baseline. We excluded articles in which pediatric populations were included or original empirical data were not reported. Although we generally excluded articles that focused on psychological interventions for HSCT recipients, we note the intervention literature when providing directions for future research. Although we cite papers that included measures of neuropsychological functioning, we do not discuss the cognitive effects of chemotherapy and radiation and refer the reader to recent reviews [7,8]. Throughout this paper cross-sectional work is only cited if few longitudinal studies with HSCT survivors have examined a particular issue (e.g. posttraumatic stress symptoms), or scarce data are available for a particular time point (e.g. 10-year follow-up data). This article first reviews the literature on HSCT recipients’ self-reported physical well-being with an emphasis on fatigue, a common complaint of HSCT survivors. Second, the psychological distress of HSCT recipients is discussed, including depression, anxiety, and posttraumatic stress symptoms. Third, research on vocational and financial status, social well-being, and sexuality and fertility is reviewed. Finally, methodological and conceptual limitations of prior research are presented along with directions for future research.