Patient Self-Perceived Burden and Caregiver Burden in Recipients of Hematopoietic Stem Cell Transplantation: A Longitudinal Study Examining Gender Differences

Recently, HSCT centres have shifted to performing outpatient HSCTs. Despite close medical supervision, this shifts the "burden of care" to the patient's caregiver. This places additional physical, emotional and social stresses on the caregiver which can lead to caregiver distress. Likewise, patients may feel less able to contribute, leading to guilt and concern for their caregiver's well-being, also known as self perceived burden (SPB). Moreover, patient SPB is associated with distress which has been negatively correlated with post-transplant outcomes. We sought to document patient SPB and caregiver burden over the HSCT trajectory and to assess potential gender differences in the perception of burden. HSCT recipients and their spousal caregivers were consecutively recruited prior to HSCT from The Ottawa General Hospital between March 2011 and September 2012. Patients completed the SPB Scale, and caregivers completed the Bakas Caregiving Outcomes Scale (to assess burden) at three time points: pre-transplantation, 30 days post, and 100 days post-transplant. Gender differences influencing changes in SPB and caregiver burden were examined using a Mixed 2 way ANOVA. Sixty-three dyads were included in the analyses, with 43 autologous and 20 allogeneic HSCTs. There were 39 males and 24 females patients. The mean patient and caregiver ages were 54.4 years and 52.7 years respectively. The underlying diseases were Acute(15%) and Chronic(3%) Leukemia, Myeloma(46%), NHL(26%), HL(4%) and others(6%). Patient SPB decreased significantly across time (F(1,61)=16.66 p<.01), without differences between males and females (F(1,61)=0.193, ns). Overall, gender did not influence the change in patient SPB over time (F(1,61)=1.03, ns). Nonetheless, visual inspection of Figure 1 suggests there may be gender differences at 30 days for patient SPB. Caregiver burden did not change over time (F(2,60)=0.661, ns), no appreciable differences were found between genders (F(2,60)=1.811, ns) and the interaction was not significant (F(2, 60)=0.977, ns). This was the first study to examine SPB in a HSCT patient population. Overall, patient SPB was noticeably lower relative to scores reported for palliative cancer patients, stroke patients, and chronic pain patients. This finding is surprising and warrants further investigation given that in the literature, patient reported quality of life tends to be poor and correlates with SPB. This may relate to the timing of assessment, suggesting that the first 100 days of HSCT, patients are primarily focused on themselves and their needs, paying less attention to the impact they may be having on caregivers. Finally, caregiver burden scores remained elevated for both genders throughout the HSCT trajectory. Psychosocial clinicians should provide support to caregivers, particularly those who express high levels of burden.

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