In this novel study of long-term survivors of pediatric and adolescent HCT, we found that nearly a quarter of the survivors reported unemployment at more than two decades after HCT. Employed survivors reported less pain interference and sleep disturbance concerns. Additionally, higher work performance was associated with less pain interference and cognitive concerns, more satisfaction with social roles and activities, and better physical function.

Several prior studies focusing on survivors of HCT who underwent transplant at an older age have reported significant associations between employment and QOL. Morrison and colleagues reported prevalence and determinants of return to work status at 1-year post-HCT among 502 autologous and allogeneic HCT survivors treated at a single center [6]. Of those working full time at HCT, 68.7% had returned to work by 1-year post-HCT. As reported in our analysis, full-time employed survivors were less likely to report pain. A similar association between pain and unemployment has also been reported by Gruber et al. who included survivors at a mean time of 6.4 years since HCT [25]. An association between pain and early retirement, lower work productivity, job lock, and higher financial hardship has also been reported among cancer survivors treated with conventional therapy [26], suggesting potential undertreatment of pain among survivors. Additionally, we noted significant association between employment and sleep disturbance which is consistent with a prior report [25]. Other studies have also shown an association between employment and overall QOL with follow-up ranging between 1 and 18 years post-HCT, indicating better QOL among employed HCT survivors [7,8,9, 27,28,29].

While these studies, including ours, helped establish the relationship between work status and QOL, not many studies have focused on work absenteeism or presenteeism and their associations with QOL. Kirchhoff et al. have previously described self-reported work ability among adult HCT survivors [30]. Survivors reported that their work ability was 80–87% of their pre-HCT work ability, which is similar to the absolute presenteeism score reported in our analysis. They also reported an association between physical or mental health function at 6 months and post-HCT work ability. To our knowledge, ours is the first study showing an association between work presenteeism and quality of life among long-term childhood HCT survivors. We noted significant associations between work presenteeism and depression, satisfaction with activities, physical function, and cognitive concerns.

The findings of this study have several implications. We found that the unemployment rate reported by survivors was higher when described in relation to the US general population unemployment rate [31]. A higher unemployment rate in these long-term childhood HCT survivors could have a direct effect on survivors’ insurance status as almost 50% of the US population depends on employment for their insurance coverage [32]. Lack of insurance coverage could affect survivors’ access to healthcare and ability to undergo routine surveillance for organ dysfunction and subsequent neoplasms as recommended by the long-term follow-up guidelines from the Children’s Oncology Group [33] and American Society of Transplantation and Cellular Therapy [34]. Additionally, high out-of-pocket cost could lead to financial hardship in material, behavioral, and psychological domains [35]. Similarly, high missed time at work and low work productivity could eventually affect survivors’ ability to retain employment, vocational attainment, and overall earnings. The associations between work status, productivity, and QOL underscore the need for developing interventions to assess and manage conditions such as pain, fatigue, anxiety, depression, and cognitive concerns and providing vocational counseling and rehabilitation to long-term childhood HCT survivors experiencing such conditions.

There are certain limitations which need to be acknowledged. Some study participants were recruited during the COVID-19 pandemic, and their responses to work-related questions and QOL could have been impacted by the pandemic. Additionally, given the cross-sectional nature of the study, we were unable to determine the temporality of identified associations due to lack of detailed information on timing of physical, emotional, or social dysfunction onset. While we identified significant associations between employment, work productivity, and QOL, the etiology behind these associations remains unclear due to lack of information on any concurrent chronic health conditions affecting survivors’ organ function and resultant QOL and lack of qualitative data. Additionally, we noted an association between higher missed time at work (absenteeism) and lower depression and fatigue; however, the reasons for such association remain unclear. It is possibly because of the low prevalence of higher absenteeism in our population. Given the single-center study design, there could be certain biases that need to be considered. For instance, the majority of survivors were transplanted using an unrelated donor and we also noted a high incidence of acute and chronic GVHD as well as subsequent neoplasms in our cohort. It is possible that the survivors with long-term sequelae related to HCT such as GVHD tend to stay connected to the transplant centers and were more likely to participate in the study. Therefore, the estimates of work status, absenteeism, presenteeism, and QOL scores could be skewed. Similarly, the use of total body irradiation in majority of the survivors could have impacted their work status and work performance considering its impact on cognitive function [36, 37]. Lastly, given the small number of events, we could not perform a multivariable analysis. Additional work is needed to further understand the associations identified in our study and implications in a larger cohort. Nonetheless, in this hypothesis-generating research, using the validated patient-reported outcomes measurement, we were able to evaluate several key aspects of survivors’ work status, productivity, and QOL unavailable to date.

Notwithstanding these limitations, our analysis provides an important insight into the implications of work outcomes on HCT survivors’ physical, mental, and social health. These findings emphasize the importance of routine longitudinal assessment of vocational progress including work status, work absenteeism, presenteeism, financial hardship, and QOL for HCT survivors. Additionally, given the associations between work productivity and QOL, future efforts should be directed toward developing effective communication strategies with employers to balance work expectations of survivors and aggressive management of survivors’ physical and mental health concerns.