Hematopoietic stem cell transplant (HSCT) is an established treatment for certain hematologic malignancies (Thomas, 2004). The process of undergoing HSCT is intense and time consuming. Patients and their caregivers are required to commit to several months of treatment and close follow-up. Our program requires patients to have a full-time caregiver to assist them with transportation, treatment compliance, nutritional intake and emotional support. Patients are not allowed to be alone, go to public areas, or independently manage their medications. The need for a caregiver places an extra burden on the patient and their loved ones, as caregivers are not able to work full time while caring for an HSCT patient. Many studies have looked at the quality of life and various psychological symptoms in patients undergoing HSCT. Studies have analyzed the impact of HSCT on patient health related quality of life (HRQOL) during and after HSCT. However, little is known about the impact of HSCT on spouses/partners or other primary caregivers. More recently, transplant programs have begun to identify needs of HSCT caregivers. Researchers have begun to recognize caregivers as an important and often overlooked participant in the HSCT process. The current literature on HSCT caregivers suggests that caregivers for HSCT patients do report feeling stressed, exhausted emotionally and physically, and in need of support (Aslan, 2006; Boyle, 2000; Foxall, 2006). One study identified high levels of stress and depression pre-transplant (Harris, 2009). A study by Gaston-Johansson (2004), found that primary caregivers of patients with breast cancer scheduled for HSCT experience fatigue, anxiety, burden of care, and low quality of life. The purpose of this study is to examine the impact of HSCT on the caregiver's overall level of fatigue and distress. In this study, twenty-eight caregivers were evaluated using the Brief Symptom Inventory-18 (BSI-18) and Brief Fatigue Inventory (BFI) at four time points during the transplant process (PreBMT, Day 0, Day +7, and Day +30) in order to assess global stress and fatigue. These 28 caregivers were the sole caregiver responsible for a patient undergoing autologous HSCT, and did not have someone else to replace them as a caregiver during the transplant process. Caregivers were majority female (71%), Caucasian (75%), spouses/significant others (75%), and able to live at home for transplant (64%). The mean caregiver age was 55 (range = 32–69). Results indicate that there was a significant increase in fatigue for caregivers between PreBMT and Day 0 (p=.04). There was also a difference (p=.08) showing increased fatigue for caregivers between the initial PreBMT and all other time points (Days 0, 7, and 30). The caregivers indicated that their level of fatigue significantly interferes with daily functioning, including general activity and mood. The scores assessing distress (BSI-18) showed no significant difference in across the different time periods. However, throughout the transplant process, approximately 4% to 10% of caregivers did report clinically significant levels of distress, including clinically significant levels of anxiety, depression and/or somatic complaints. There was no difference in the level of distress or fatigue based on gender. In conclusion, primary caregivers of patients scheduled for HSCT experience significant levels of fatigue. Caregivers reported that their fatigue often interferes with their ability to function daily and that this fatigue increased once the transplant process began. This correlates with the requirement for the caregiver to be with the patient full time with the initiation of the preparative regimen just before Day 0. Some caregivers also report clinically significant levels of distress, although it does not appear to change significantly during the transplant process. Further research is needed to evaluate the impact of caregiver fatigue on the patient's transplant outcome and factors that might assist with caregiver distress and fatigue.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.