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.

The financial requirements and time commitments of caregivers for autologous stem cell transplant recipients.

This study is a prospective evaluation of the time commitment and financial requirements of caregivers of autologous stem cell recipients during the period of inpatient hospitalization. Eligible patients identified one caregiver, and a one-page survey addressing the necessary time commitment and out-of-pocket expenses was completed by the caregiver at each visit. The caregivers of 40 patients participated (non-Hodgkin's lymphoma [n = 19], multiple myeloma [n = 18], Hodgkin's lymphoma [n = 2], or acute myelogenous leukemia [n = 1]). Caregivers included spouses (n = 35), partners/friends (n = 2), or family members (n = 3). Results were summarized for the patient's total length of stay. Each caregiver traveled a median of 829 miles over 17.8 hours. Out-of-pocket expenses varied greatly depending on whether a caregiver stayed in local accommodations (cohort 1; n = 11) or in the patient's hospital room (cohort 2; n = 29). Total expenses (median) for each caregiver in cohort 1 were dollar 849.35, including accommodations (dollar 560), gasoline (dollar 87.35), and food (dollar 202). Total expenses (median) for each caregiver in cohort 2 were dollar 181.15, including gasoline (dollar 70) and food (dollar 111.15). Each caregiver in cohort 1 lost a median of 43.5 hours of work compared with 8 hours for each caregiver in cohort 2. The results from this prospective study demonstrate that there is a significant financial and time requirement on the part of the caregiver when a family member or significant other is hospitalized for an autologous stem cell transplant.

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.

Group medical appointments: organization and implementation in the bone marrow transplantation clinic.

Group medical appointments provide patients with prompt access to care, greater attention to their psychosocial needs, and increased time with their medical team. Care providers evaluate more patients with similar needs in a shorter period. Eligible patients (between 100 days and 3 years after autologous stem cell transplantation) were contacted to participate. The laboratory and radiographic results of each patient's completed reevaluation were entered into the electronic template office note before their visit. A group medical visit model, called a Physical Shared Medical Appointment (PSMA), was employed because this uses individual patient examinations followed by a group meeting. On the day of the visit, brief physical examinations were performed on each patient. A transplantation physician then met with the group of patients and answered questions. Patient satisfaction surveys were distributed upon completion of the group session. Each PSMA was limited to 10 patients to facilitate patient participation. Questions during the group meeting were general and applicable to all patients. At completion of the 2-hour visit, patient surveys indicated an extremely high level of satisfaction and the preference to attend a future PSMA. Issues discussed during the group meeting were pertinent to all transplant recipients, regardless of diagnosis. The PSMA model allows the patient to spend extended time with their care providers while providing the care providers an opportunity to discuss health issues with numerous patients during 1 appointment. The Dartmouth Transplant PSMA model is expanding to pretransplantation and postallogeneic transplant recipients.