Caregivers' Out-of-Pocket Expenses and Time Commitment Following Hematopoietic Stem Cell Transplantation at a Rural Cancer Center.

The emotional and physical toll on caregivers of cancer patients is well documented, but research evaluating the financial burdens and time commitments of caregivers is limited. We suspected that the rural location of our cancer center would intensify these burdens for caregivers. We conducted a prospective trial to assess the out-of-pocket expenses and time commitment of caregivers of hematopoietic stem cell transplantation recipients within the first 4 weeks after discharge from the hospital from a National Cancer Institute (NCI)-designated comprehensive cancer center. These results show that caregivers of autologous recipients paid out-of-pocket expenses of $196 over 4 weeks. If lost wages were included, the expenses increased to $736 during this period. Caregivers of allogeneic recipients had out-of-pocket expenses of $110 in 4 weeks, or a total of $610 when lost wages were included. In the month after discharge from the hospital, caregivers traveled a median distance of 450 miles or 560 miles, depending on whether the patient received an autologous transplant or an allogeneic transplant, respectively. These results demonstrate a compelling need to address caregiver support, given the significant financial out-of-pocket expenses and time commitment.

A pilot study of activity engagement in the first six months after stem cell transplantation.

UNLABELLED: PRPOSE/OBJECTIVES: to describe the natural pace and pattern of activity resumption in the first six months after stem cell transplantation (SCT). DESIGN: longitudinal, descriptive survey. SETTING: bone marrow transplantation program of a National Cancer Institute-designated comprehensive cancer center in the northeastern United States. SAMPLE: 18 men and 18 women who underwent either autologous (83%) or allogeneic (17%) transplantation. METHODS: participants were surveyed 30 days, 100 days, and six months after SCT. Descriptive statistics were followed by exploratory linear mixed modeling with factors of time, gender, and the interaction between time and gender. MAIN RESEARCH VARIABLES: a modified checklist version of the Activity Card Sort was used to measure activity retention. FINDINGS: participants generally were performing 49% of their usual activities 30 days after transplantation, 70% of their premorbid activities 100 days after transplantation, and 77% of their premorbid activities six months after transplantation. Level of activity engagement increased over time, with the greatest changes observed from 30-100 days after SCT. Men retained more of their activities than women in the domains of low physical-demand leisure and social activities. CONCLUSIONS: rehabilitation screening may be most helpful in the period from 100 days to six months, when activity levels begin to plateau. Activity recovery may differ for men and women; future research should explore how this could affect rehabilitation needs. IMPLICATIONS FOR NURSING: nurses can use structured surveys to explore and promote patients' satisfaction with and ability to engage in daily activities and ensure appropriate referrals to rehabilitation during recovery from SCT.