Introduction

Return to work/school (RTW) and quality of life (QOL) after hematopoietic cell transplantation (HCT) are interdependent. We only have data from resource-rich regions about RTW, a vital survivorship care parameter. The percentage of recipients who were working at the time of HCT and RTW varies from 30-76% by region^{1–4, 5}. In regions with high RTW (76%), the most typical time for resignation is after discharge post-HCT (46%), followed by resignation after the initial diagnosis (27%)⁶. However, long-term follow-up (LTFU) in most countries does not incorporate RTW advice. A survey of the Center for International Blood and Marrow Transplant Research (CIBMTR) centers showed that only 44% of centers had RTW guidelines, and only 36% had RTW programs incorporated into their LTFU care⁷. Data on return to school are even more limited. In particular, we need data about RTW from centers in India, where even data about LTFU are scarce⁸. With the increasing number of HCT survivors in India, more research is warranted on HCT recipients' experiences with RTW. For instance, the factors associated with RTW in India may differ from those in more resource-rich regions. This study assessed the incidence of RTW among HCT survivors in India and analyzed its associated factors.

Methods

This single-center cross-sectional study was conducted at the LTFU clinic of a large-volume HCT center in North India during 2022-2023. HCT survivors surviving beyond four months were included after obtaining informed consent. This study was approved by the Institutional Ethics Committee. Sociodemographic, disease, and treatment information, including HCT parameters for all recipients, were available at baseline. Additional work/school-related information, including RTW, was acquired at the follow-up. For the analysis, we broadly classified work into three categories based on the physical work required: school/unemployed/retired, desk jobs, and field/business/homemakers. Any RTW at less than the pre-HCT levels, as perceived by the recipients, was classified as part-time RTW. Factors affecting RTW (no versus part-time versus full-time) were evaluated using univariate (ANOVA) and binary logistic regression analyses (no RTW versus RTW).

Results

A total of 126 HCT survivors participated in this study. Of these, 34 (27%) did not RTW, 47 (37%) returned to part-time work, and 45 (36%) returned to full-time employment. All three patient cohorts were matched for age (median 40 versus 41 versus 37 years, respectively; p=0.5) (Table 1). The median follow-up post-HCT was also similar (3.6 versus 3.1 versus 3.5 years, respectively; p=0.5). The proportions of males/females and single/married individuals in all three cohorts were similar (p=0.6 and 1.0, respectively). However, the cohorts significantly differed on socio-economic parameters such as education, pre-HCT jobs, primary wage earners, and income. Having graduate or higher education was associated with a higher RTW than being illiterate or a school student (60% versus 40% for part-time, and 78% versus 22% for full-time, p=0.01). Survivors with desk jobs were more likely to RTW full-time (47%), and those with field/business/homemakers were more likely to RTW part-time (47%) than school-going/unemployed or retired survivors, who were more likely to not RTW (47%) (p=0.001). Survivors who were dependent on other family members and earning less than the taxable income were more likely to not RTW compared to those who were self-wage earners (74% versus 26%, p=0.03) and had a higher income at the time of diagnosis (82% versus 18%, p=0.001). Funding for HCT (private/government or out-of-pocket), disease diagnosis, and type of HCT (autologous or allogeneic) did not affect RTW. However, survivors receiving myeloablative conditioning were less likely to RTW than those receiving reduced-intensity/non-myeloablative conditioning (97% versus 3%, p=0.03). Moderate-to-severe chronic graft versus host disease (GVHD) did not affect RTW.

The binary logistic regression analysis comparing those who did and did not RTW revealed that survivors with a higher (taxable) income were more likely to RTW than survivors with a lower (non-taxable) income (OR 3.5; CI 1.2-10.2, p=0.019). Survivors with a desk job were more likely to RTW than those who were already unemployed/retired or a student (OR 4.5; 1.1-18.0, p=0.030). Education level, primary wage status, and conditioning regimen intensity were not significant factors.

We further analyzed the reasons for RTW (or not). 65% of those who did not RTW cited their health status and precautions. Other reasons (32%) included psychosocial, wanting to spend time with family, and spiritual factors. Only one patient reported not finding a job as a reason for not RTW. Of those who RTW, the majority (80%) returned to the same work within a year post-HCT; 87% mentioned having a flexible and supportive workplace environment.

Discussion

Although most HCT providers recognize the need for RTW guidance for HCT survivors, only a small proportion receive it⁷. This has prompted the American Society for Transplantation and Cellular Therapy (ASTCT) to provide RTW recommendations to HCT providers recently¹. These guidelines recommend a multidisciplinary collaborative approach involving HCT physicians, psychologists, social workers, occupational therapists, physiotherapists, vocational counselors, and nurses for RTW plans. However, we need crucial data on the incidence of and factors associated with RTW to provide appropriate guidance in resource-challenged regions. Our study shows that 73% of HCT survivors RTW either part- or full-time at a median of more than three years. Only a quarter could not RTW. These proportions are encouraging, given that only approximately 50-60% achieved RTW in resource-rich economies⁷. Surprisingly, most patients returned to the same work and reported a flexible and supportive work environment. Except for the Japanese study that showed that occupational health staff at the workplace was associated with RTW, little is known about workplace adaptability⁶.

Our study found that the type of pre-HCT job (desk job) and higher income were motivators for RTW. This is consistent with studies from resource-rich regions worldwide^{2, 3, 6} (Table 2). However, the only factor that is different in our study is the lack of impact of being a female on RTW, which is in contrast to other studies reporting it as a factor associated with no RTW. This may be because we included homemakers as a category; the support system of Indian families encouraged homemakers to return to at least partial work after HCT. We also found no difference in RTW by HCT type, conditioning regimen, or GVHD, consistent with previous studies^{5, 9}. The limitations of our study include its cross-sectional design and the lack of a correlation between QoL and disease remission status. In addition, given the small numbers, we did not separately analyze homemakers and return to school from RTW, which makes our RTW definition unique. Since work hours are not defined in any Indian workplace, we relied on patients' perceptions of RTW of part- or full-time employment. The job of an Indian homemaker is a full-time endeavor involving hard labor, as most homemakers are involved in tasks related to cooking, cleaning, laundry, and shopping for household essentials and groceries. Given the ASTCT's recommendations for RTW guidance in resource-rich regions, we need to adapt these recommendations to resource-challenged areas without access to all multidisciplinary staff. Finally, the flexibility of Indian workplaces was encouraging. In collaboration with medical social workers, HCT providers should guide the vocational rehabilitation of all HCT survivors. This study serves to sensitize HCT teams in India to this vital survivorship care parameter and incorporate RTW plans into their LTFU care.

Author Contributions

AP and UB contributed equally. AP, UB, PM, and DPL contributed to the study conception and design. All authors performed data collection and analysis. AP, UB, and DPL wrote the first draft of the manuscript, and all authors commented on previous versions. All authors read and approved the final manuscript.

Ethics Approval

The study was cleared by the institutional ethics committee, PGIMER, NK/7391/Study/851.

Informed consent

Informed consent was obtained from all participants included in the study.

Funding Statement

The American Society of Hematology (ASH) Global Research Award to DPL partly funded the study.

Conflicts of Interest

The authors declare no conflict of interest. Disclosure forms provided by the authors are available on the website.