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Over the past 20 years, considerable healthcare resources have shifted from an inpatient to an outpatient setting. To be in an outpatient setting or at home after allogeneic haematopoietic stem cell transplantation (allo-HSCT) has been shown to be medically safe and beneficial to the patient. In this study we describe patients' experiences of different care settings (hospital or home) and a new life situation during the acute post-transplant phase after HSCT. Semi-structured interviews were conducted with 15 patients (six women and nine men) 29-120 days after HSCT. An inductive qualitative content analysis was performed to analyse the data. The analysis resulted in four categories: To be in a safe place, To have a supportive network, My way of taking control, and My uncertain return to normality. The findings showed that patients undergoing HSCT felt medically safe regardless of the care setting. The importance of a supportive network (i.e. the healthcare team, family and friends) was evident for all patients. Both emotional and problem-focused strategies were used to cope with an uncertain future. Being at home had some positive advantages, including freedom, having the potential for more physical activity, and being with family members. The study highlights some key areas thought to provide more personalised care after HSCT.

Hospital care or home care after allogeneic hematopoietic stem cell transplantation : patients’ experiences of care and daily life during the early phase

To describe functional status (FS), general health (GH) and symptom distress (SD) from admission to 1 year post-SCT and to identify medical, demographic, and/or patient-reported outcome variables associated with patient-perceived GH. Forty-one patients (27 women) with a median age of 44 (18–65) years answered three questionnaires (SIP, SWED-QUAL, and SFID-SCT) from admission to 1 year post-SCT. At discharge, 59% of the patients reported poor FS and GH, and 24% reported >10 simultaneous symptoms. After 1 year post-SCT, 22% still reported poor FS, 32% poor GH, and 12% >10 simultaneous symptoms. Compared with admission, significantly larger proportions of the patients reported poor GH at discharge (20 vs 59%, p = .001), poor FS at 6 months (24 vs 59%, p = .004), and poor GH [The number of symptoms was found to be significantly associated with poor GH at discharge (OR 1.330, p = .009) and at 1 year post-SCT (OR 2.000, p = .010)]. Patients reporting “poor GH” at discharge and at 1 year post-SCT reported a median of 7 and 10 symptoms, respectively. Patients with “good GH” reported a median of three symptoms both at T1 and T4. “Tiredness”, “anxiety”, “mouth dryness”, “loss of appetite”, and “diarrhoea” were reported by a larger proportion of the patients reporting “poor GH”. The results confirm that some patients who have undergone a SCT have a negatively affected life situation. The study indicates that actively asking for symptoms and applying the best treatment for symptom alleviation are among the most important measures that SCT teams can take to help the patients perceive better general health and an improved life situation.

The main aim of this study was to investigate the patients' self-reported symptom occurrence, symptom intensity (SI), and symptom distress (SD) from admission for stem-cell transplantation (SCT) until discharge from the ward. Forty-three patients participated and data were collected at 7 different time-points by using the self-administered Symptom Frequency, Intensity, and Distress questionnaire for SCT (SFID-SCT). The results showed that symptom occurrence followed a curve on which the highest frequencies of symptoms were reported from the day of the SCT (T2) until the end of the protective care period (T5). The mean SI and SD scores became higher when the number of reported symptoms increased. Between T2 and T5, 33% to 54% of the patients reported >10 simultaneous symptoms. Symptoms reported by more than 50% of the patients during T2-T5 were tiredness, loss of appetite, mouth dryness, nausea, sleeping disturbances, diarrhea, and changes of taste. Loss of appetite, tiredness, and mouth dryness were, in descending order, the 3 symptoms reported as most intense and distressing. A statistically significantly higher SD-score was found for the patients undergoing allogeneic SCT on the day before start of the conditioning regimen, as compared to the patients undergoing autologous SCT. Patients reporting no anxiety on admission were found to have higher, mean SD-scores at the end of the hospital stay than anxious patients. The SFID-SCT questionnaire was found to give useful information not only about symptom occurrence but also about SI and SD. To use an instrument that distinguishes between these aspects of the symptom experience may help health care professionals to support the patients through the SCT-process.

The aims of this study were to describe how a group of patients with different malignant diseases perceived symptom distress (SD), functional status (FS) and health-related quality of life (HRQOL) on admission to the hospital for stem-cell transplantation (SCT), to compare the obtained data regarding FS and HRQOL with similar data from two general-population groups, and to relate the results to disease- and treatment-specific data. Fifty-one patients participated in the study. Three instruments were used to collect data: SFID-SCT, SIP and SWED-QUAL. The majority of the patients (92%) reported ongoing symptoms even before the SCT with tiredness (67%) and anxiety (53%) as the two most commonly reported symptoms. Although tiredness and anxiety were reported to be the most frequently occurring symptoms, these symptoms were not considered to cause that much distress. Instead, vomiting, reduced mobility and fever, although less commonly occurring, were reported as highly distressing when present. Compared with the general-population groups, the patients reported significantly poorer FS and HRQOL but no statistically significant correlations were found between SD, FS or HRQOL and the time since the last chemotherapy cycle or cycles respectively. Patients with advanced disease and patients with multiple myeloma were found to report more SD and poorer FS and HRQOL.

The aim of this study was to describe family members' life situation and experiences of care in two different care settings, the patient's home or in hospital during the acute post-transplantation phase after allogeneic haematopoietic stem cell transplantation (HSCT). Data were collected through semi-structured interviews with 14 family members (seven women and seven men). An inductive qualitative content analysis was used to analyse the data. The majority of the family members' (n = 10) had experiences from home care. The findings show the family members' voice of the uncertainty in different ways, related with the unknown prognosis of the HSCT, presented as Being me being us in an uncertain time. The data are classified into; To meet a caring organisation, To be in different care settings, To be a family member and To have a caring relationship. Positive experiences such as freedom and security from home care were identified. The competence and support from the healthcare professionals was profound. Different strategies such as adjusting, having hope and live in the present used to balance to live in an uncertain time. The healthcare professionals need to identify psychosocial problems, and integrate the psychosocial support for the family to alleviate or decrease anxiety during HSCT, regardless of the care setting.

Treatment at home during the pancytopenic phase after allogeneic hematopoietic stem cell transplantation (HSCT) has been an option for patients at our center since 1998. Earlier studies have shown that home care is safe and has medical advantages. In this study, we present patients' experiences of care and support while being treated in hospital or at home during the acute post-transplantation phase.Patients (n = 41, 22 in hospital care and 19 in home care) answered the SAUC questionnaire at discharge (when home, or from hospital). Both statistical analysis and deductive content analysis were used.The patients were highly satisfied with the care and support during the acute post-transplantation phase. Patients in home care were found to be more satisfied with care in general than patients in hospital care. The importance of safety, empathy, and encouragement from healthcare staff were expressed regardless of where care was given. Patients also felt that receipt of continuous, updated information during treatment was important and they had a strong belief in HSCT but were uncertain of the future regarding recovery.The main findings of this study were that in comparison to hospital care, home care does not appear to have a significant negative effect on patients' experiences of care and support during the acute post-transplantation phase. In addition patients in home care felt safe, seen as a person and encouragement seem to empower the patients at home. Thus, this study may encourage other transplantation centers to provide home care if the patients want it.

Approximately 10% of all patients is in some way harmed by the health care system. Risk factors have been identified and patients with cancer are at high risk due to the seriousness of the disease, co-morbidity, often old age, high risk treatments such as chemo and radiotherapy. Therefore, a closer look on safety for patients undergoing chemotherapy is needed. The aim of this study was to identify and evaluate interventions for improved patient safety in chemotherapy care.We undertook a review of the available evidence regarding interventions to improve patient safety in relation to chemotherapy care.We found 12 studies describing the following interventions; 1) Computerized Prescription Order Entry (CPOE), 2) Failure Mode and Effect Analysis (FMEA) and Lean Sigma, 3) Error reporting and surveillance systems, 4) Administration Checklist and 5) Education for nurses. Even if all five interventions showed positive effects in patient safety, the evidence level is rather weak due to design, sample size and the difficulties involved measuring patient safety issues.Three studies with fairly high evidence level showed that computerized chemotherapy prescriptions were significantly safer than manual prescriptions and could therefore be recommended. For the other remaining interventions, more research is needed to assess the effect on improved patient safety in chemotherapy care. There is a need for more rigorous studies with sophisticated design for generating evidence in the field.

Patient participation in goal setting and decision making is a core component of the rehabilitation process, but there is little information on what patients want to achieve after allogeneic stem cell transplantation (allo-SCT). The aim of this study was to describe adult patients' perceptions of goals related to health and function, as well as self-perceived limitations and facilitating strategies in the first 13 months after allo-SCT.Fifteen patients with a median age of 44 years (range, 22-65 years) were interviewed on one occasion during the first year after allo-SCT. Data were analysed using qualitative content analysis.Results showed that patients felt that time after allo-SCT largely concerned: "to be healthy" and "to participate in a normal life". Some patients felt it was easy to set goals while others found it difficult. Most described goals had a long-term character. Patients were faced with a wide variety of limitations of which a few did not link to a described goal. Several facilitating strategies were described that either had or could help patients to reach their goals.Our results indicate that assistance with setting achievable goals, including individualised strategies and support from health care professionals to realise the goals, may assist in the rehabilitation to restore health and function after allo-SCT.

The functional capacity and the health-related quality of life were investigated in nine women (ages 23-58 years) undergoing high-dose chemotherapy with autologous stem-cell transplantation (ASCT). Data were obtained by using two questionnaires: the Sickness Impact Profile (SIP) and the Swedish Health-Related Quality of Life Questionnaire (SWED-QUAL). The patients answered the questionnaires on three occasions: on admission to the transplant unit, at discharge from the unit, and 7-15 weeks after ASCT. It was found that the women were affected by the treatment in various dimensions of daily life. The transplantation primarily affected their self-rated physical health and functions. Their physical-health status was poorest at the time of discharge. The women's emotional status was found to be poor during the whole study period. The results of the present study indicate that professional nursing is essential for breast cancer patients undergoing ASCT.