Dismantle and rebuild: the importance of preparedness and self-efficacy before, during and after allogeneic haematopoietic cell transplantation.

PURPOSE: The aim of this study was to explore patients' experiences of being prepared for allogenic haematopoietic cell transplantation and to explore their perceived self-efficacy and preparedness for self-care after allogenic haematopoietic cell transplantation. METHODS: Nine participants, who recently underwent allo-HCT, were interviewed regarding their views on preparedness, self-efficacy and self-care. The interviews were analysed using inductive qualitative content analysis. RESULTS: An overarching theme, Life is taken apart, then you have to know how to put the pieces together, and four sub-themes: Convert information into something understandable; Taking responsibility, maintaining and preparing for an uncertain time in life; Balancing vigilance with independence; and Reorientating in an altered body places new demands on self-care illustrate the dismantlement of life during treatment and how actions and approaches can build a new life. CONCLUSIONS: Both participants and healthcare professionals prioritised preparing for allo-HCT in the period before admission. However, during admission, preparation decreased and the time was not used for preparatory learning. This meant that participants were well prepared for the acute phase but unprepared for life after completion of treatment. Among the participants, self-efficacy was good. They sought information about taking care of their health before and in the aftermath of allo-HCT. IMPLICATIONS FOR CANCER SURVIVORS: This study provides insight into, and knowledge about, how patients prepare before, during and after treatment. This knowledge should primarily be directed towards healthcare professionals to be used for future patients who may need advice and support, as well as continued preparation for a life after transplantation.

Nursing as a balancing act in allogeneic hematopoietic cell transplantation -nurses' experiences through participation in workshops.

PURPOSE: Registered nurses have a key role in supporting patients during the trajectory of allogeneic hematopoietic cell transplantation (allo-HCT). However, the circumstances for performing nursing are not previously outlined therefore the purpose of this study was to explore the conditions for nursing care in allo-HCT. METHOD: An explorative design, inspired by Experienced based co-design was used to gather experiences, thoughts and visions of nursing care in allo-HCT by means of workshops. Thematic analysis was applied to analyse the data. RESULT: An overarching theme that was defined from the data was nursing as a balancing act and illustrating conditions for performing nursing in a highly medical-technical environment. The theme included three sub-themes: Fragmented care vs holistic care outlining how the holistic approach to care disappeared when the care became fragmented; Proximity vs distance illuminating the balance between seeing the patient as an independent person despite illness and the need for support; Teamwork vs stand-alone demonstrating the difficulties inherent in adapting to both teamwork and independence in nursing. CONCLUSION: This study shows that the conditions for RNs and nursing care in allo-HCT care is to balance tasks and approach towards the patient and themselves. RNs must weigh and balance what is most important in the moment and where something else often has to be put aside. It is difficult for RNs to find the time to plan each patient's care and to support the patient in the way they see as most optimal to prepare for discharge, self-care and rehabilitation.

Symptom Burden and Recovery in the First Year After Allogeneic Hematopoietic Stem Cell Transplantation.

BACKGROUND: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden. OBJECTIVE: The aim of this study was to examine patient-reported symptom burden in the first year after allo-HSCT and whether a high symptom burden 4 months after allo-HSCT predicts recovery, that is, general health and sick leave, 1 year after transplantation. METHODS: Allo-HSCT patients aged 18 to 65 years were included (n = 189). Questionnaire data were collected on admission to the allo-HSCT unit, as well as 4 and 7 months and 1 year after allo-HSCT. Logistic regression evaluated relationships between demographic characteristics, chronic graft-versus-host disease, physical activity, and a high symptom burden. RESULTS: Tiredness, susceptibility to infection, disinterest in sex, and physical weakness remained the most frequent symptoms, while distressing symptoms varied during the first year after allo-HSCT.Poor general health 1 year after allo-HSCT was associated with older age, low physical activity, and a high symptom burden 4 months after allo-HSCT. Full-time sick leave 1 year after allo-HSCT was associated with chronic graft-versus-host disease, low physical activity, and a high symptom burden 4 months after transplantation. CONCLUSIONS: Experiencing a high symptom burden 4 months after allo-HSCT can affect recovery 1 year after transplantation. Furthermore, low physical activity 4 months after allo-HSCT can predict both general health and sick leave 1 year after transplantation. IMPLICATIONS FOR PRACTICE: Repeated symptom assessment, including experienced distress, is central for reducing overall symptom burden and supporting recovery after allo-HSCT.

Many days at home during neutropenia after allogeneic hematopoietic stem cell transplantation correlates with low incidence of acute graft-versus-host disease.

Patients are isolated in the hospital during the neutropenic phase after allogeneic hematopoietic stem cell transplantation. We challenged this by allowing patients to be treated at home. A nurse from the unit visited and checked the patient. One hundred forty-six patients treated at home were compared with matched hospital control subjects. Oral intake was intensified from September 2006 and improved (P = .002). We compared 4 groups: home care and control subjects before and after September 2006. The cumulative incidence of acute graft-versus-host disease (GVHD) of grades II to IV was 15% in the "old" home care group, which was significantly lower than that of 32% to 44% in the other groups (P < .03). Transplantation-related mortality, chronic GVHD, and relapse were similar in the groups. The "new" home care patients spent fewer days at home (P = .002). In multivariate analysis, GVHD of grades 0 to I was associated with home care (hazard ratio [HR], 2.46; P = .02) and with days spent at home (HR, .92; P = .005) but not with oral nutrition (HR, .98; P = .13). Five-year survival was 61% in the home care group as compared with 49% in the control subjects (P = .07). Home care is safe. Home care and many days spent at home were correlated with a low risk of acute GVHD.

Home care during the pancytopenic phase after allogeneic hematopoietic stem cell transplantation is advantageous compared with hospital care.

After myeloablative treatment and allogeneic stem cell transplantation (SCT), patients are kept in isolation rooms in the hospital to prevent neutropenic infections. During a 3-year period, patients were given the option of treatment at home after SCT. Daily visits by an experienced nurse and daily phone calls from a physician from the unit were included in the protocol. We compared 36 patients who wished to be treated at home with 18 patients who chose hospital care (control group 1). A matched control group of 36 patients treated in the hospital served as control group 2. All home care patients had hematologic malignancies and 19 were in first remission or first chronic phase. Of the donors, 25 were unrelated. The patients spent a median of 16 days at home (range, 0-26 days). Before discharge to the outpatient clinic after SCT, patients spent a median of 4 days (range, 0-39 days) in the hospital. In the multivariate analysis, the home care patients were discharged earlier (relative risk [RR] 0.33, P =.03), had fewer days on total parenteral nutrition (RR 0.24, P <.01), less acute graft-versus-host disease (GVHD) grades II-IV (RR 0.25, P =.01), lower transplantation-related mortality rates (RR 0.22, P =.04), and lower costs (RR 0.37, P <.05), compared with the controls treated in the hospital. The 2-year survival rates were 70% in the home care group versus 51% and 57% (not significant) in the 2 control groups, respectively (P <.03). To conclude, home care after SCT is a novel and safe approach. This study found it to be advantageous, compared with hospital care.