Employment, income, and caregiver impact of cGvHD after HSCT

Chronic graft-versus-host disease (cGvHD) is a common complication of hematopoietic stem cell transplant (HSCT), occurring in approximately 30–50% of HSCT survivors.¹ cGvHD treatment typically involves long-term immunosuppression, which can negatively impact physical function and quality of life as well as work and employment; this can lead to a greater reliance on caregivers. This study aimed to evaluate the impact of cGvHD on patient employment, income, and caregivers, using the Living with Chronic GvHD Patient Survey.¹

Study design¹

The survey was performed between May – August 2020, with patients recruited through consumer panels and patient advocacy groups. Baseline patient and cGvHD characteristics, alongside employment and work outcomes, were collected. The survey design is outlined in Figure 1.

Figure 1. Survey design*  

cGvHD, chronic graft-versus-host disease; HSCT, hematopoietic stem cell transplant.
*Data from Yu, et al.¹

Results¹

Patient characteristics at the time of survey completion are shown in Table 1. The majority of patients were female and white. Patient characteristics at the time of survey completion, including a subset of patients who had been employed at the time of their most recent HSCT, are shown in Table 1.

Table 1. Key patient characteristics at time of survey*

Effect of cGvHD on patients

Out of patients who were employed at the time of their most recent HSCT, 61.3% took disability leave due to their cGVHD, with a median duration of 2 years disability leave. Employment effects in these patients are shown in Figure 2.

Figure 2. Employment outcomes in patients who were employed at most recent HSCT*

HSCT, hematopoietic stem cell transplant.
*Adapted from Yu, et al.¹

Perceived effects on work were higher in patients who had been employed at last HSCT compared with the whole cohort; these are shown in Figure 3. Based on cGvHD severity or duration, there was no trend in perceived income loss, with 69.7% of all patients believing they had lost income due to their cGvHD.

Figure 3. Work effects in all patients and in patients who had been employed at most recent HSCT* 

HSCT, hematopoietic stem cell transplant.
*Adapted from Yu, et al.¹

Effect of cGvHD on caregivers

Of all patients, 72.1% had regular assistance from a caregiver, as shown in Figure 4.

Figure 4. Frequency of regular caregiver assistance* 

*Adapted from Yu, et al.¹

The majority of patients receiving assistance reported having a partner or spouse as their caregiver.  Help was needed in homemaking activities most often, such as shopping and cleaning (78.4%), transportation (77%), and for companionship/supervision (63.5%). The distribution of caregiver types is shown in Figure 5.

Figure 5. Specific caregiver types* 

HCP, healthcare professional.
*Adapted from Yu, et al.¹

Among patients who received help from unpaid caregivers, 34.5%, 16.6%, and 5.5% of caregivers reduced their working hours, terminated a job, or took early retirement, respectively. The effect on unpaid caregivers was greater when patients had severe cGvHD for ≥6 months.

Conclusion 

Significant effects on work and employment due to cGvHD were observed in this study, particularly in patients who had been employed at their last HSCT; 61.3% needed to take at least one period of disability leave, 58.8% reduced their overall working hours, and 33.8% left a job.¹ Furthermore, almost 70% of all patients believed they had lost income due to their disease, negatively affecting financial stability and quality of life.

Unpaid caregivers also reported effects on work, with 16.6% terminating a job, potentially adding to the financial burden experienced by the household. Overall, this study highlights the need for improved management of cGvHD to ameliorate the negative effects on work experienced by patients and reduce the burden on caregivers. This study is limited by possible selection bias during the recruitment process; patients in advocacy groups may be more informed about their disease than the general cGvHD patient population. In addition, caregivers were not surveyed, therefore perceptions of caregivers was only given by patients.