Survey of European Blood and Marrow Transplant (EBMT) nurses to explore the current topical skin management of chronic cutaneous graft versus host disease in the real-world clinical environment.

PURPOSE: To understand the current practice in relation to the management of topical therapy for cutaneous chronic Graft versus Host Disease (ccGvHD) and access to extracorporeal photopheresis (ECP) within European allogeneic haematopoietic cell transplantation centres by a survey of nurses. METHOD: This was a multicentre cross-national study at eligible European Blood and Marrow Transplant centres. Eligibility required more than 30% of treated patients having allogeneic haematopoietic cell transplant. Centres performing only autologous stem cell transplants were excluded from the study. RESULTS: 12% of respondents were unaware of whether their centre had a policy or not for monitoring chronic cutaneous graft versus host disease. Over half had the affiliation of a dermatologist for referral, but only 19% had access to a specialist nurse. Patient education was routinely provided in most of the centres (86%). Results suggested as the severity of a patient's chronic cutaneous graft versus host disease increased, there was a reduction in the amount of topical emollients and steroids employed. Following topical therapies, systemic treatments, and other modalities such as ECP were employed with less focus directed towards topical care. CONCLUSIONS: Topical treatment is the backbone of any treatment paradigm for chronic cutaneous graft versus host disease, however, there is no universally agreed algorithm. Improved skin care may lead to a reduction in the amount of systemic therapy required, thus increasing patients' quality of life. There is little standardisation in the topical management of chronic cutaneous graft versus host disease, despite skin being the most cited organ affected by chronic graft versus host disease, this should be addressed.

The European Society for Blood and Marrow Transplantation (EBMT) roadmap and perspectives to improve nutritional care in patients undergoing hematopoietic stem cell transplantation on behalf of the Cellular Therapy and Immunobiology Working Party (CTIWP) and the Nurses Group (NG) of the EBMT.

Malnutrition is the most common comorbidity during the continuum of hematopoietic stem cell transplant (HSCT) and negatively impacts clinical outcomes, response to therapy, quality of life, and costs. The intensive conditioning regimen administered before transplant causes inflammatory damages to the gastrointestinal system, which themselves contribute to trigger graft versus host disease (GvHD) in the allogeneic setting. GvHD and other post-transplant complications such as infections adversely affect food intake and gut absorption of nutrients. Consequently, patients exhibit signs of malnutrition such as weight loss and muscle wasting, thus triggering a "vicious circle" that favours additional complications. Among HSCT centres, there is marked variability in nutritional care, from screening for malnutrition to nutritional intervention. The present paper, elaborated by the Cellular Therapy and Immunobiology Working Party and the Nurses Group of the European Society for Blood and Marrow Transplantation, aims at defining a roadmap that identifies the main nutritional critical issues in the field of HSCT. This document will be propaedeutic to the development of clinical algorithms to counteract risk factors of malnutrition, based on scientific evidence and shared among HSCT centres, and thus maximize transplant outcomes.

Worries and Psychological Well-Being in Potential Hematopoietic Stem Cell Donors Before Donation-A Swedish National Study.

BACKGROUND: The physical risks involved in donating hematopoietic stem cells have been thoroughly studied, but little is known about the psychological risks potential donors might face before donation. The aim of this study was to describe potential the pre-donation worries and psychological well-being of hematopoietic stem cell donors and investigate possible associations between donor characteristics and psychological well-being. METHODS: In a cross-sectional, national cohort study, we describe pre-donation worries and psychological well-being and investigate possible associations between donor characteristics and psychological well-being. A questionnaire was sent to prospective adult hematopoietic stem cells donors. RESULTS: The study included 210 participants, 47% of whom were related and 53% unrelated to the recipient. Of the participants, 39% reported great worry about the recipient and 12% great worry about themselves as potential donors. Symptoms of anxiety were expressed by 21%, whereas symptoms of depression were uncommon and perceived general mental health was slightly lower than in the Swedish population. Great worry about oneself, lower age, and female sex were related to increased anxiety and lower mental health. CONCLUSION: This study highlighted that some potential donors report high levels of pre-donation worry and that greater worry about oneself, lower age, and female sex are associated with lower psychological well-being. Although further studies are needed to investigate this psychological risk over time, it is clear that some potential donors are particularly vulnerable.

Sexual function of adult long-term survivors and their partners after allogeneic hematopoietic cell transplantation in Europe (S-FAST): a study from the Transplant Complications Working Party and Nurses Group of the EBMT.

Sexual dysfunction after allogeneic hematopoietic cell transplantation (allo-HCT) is a common long-term complication. We conducted a European multicenter cross-sectional study of adult allo-HCT recipients who had survived >2 years and their partners to investigate sexual functioning after HCT and to evaluate whether discussion about sexual functioning between the transplant team and the survivor and partner was perceived to have taken place. In total, 136 survivors (77 males, 59 females) and 81 partners (34 males, 47 females) participated. Median age was 56 and 54 years in male and female survivors, respectively. Forty-seven percent of male and 65% of female survivors and 57% of male and 59% of female partners reported clinically relevant sexual problems. Sixty-two percent of survivors and 79% of partners reported that sexual functioning had not been discussed with them during transplant. Standardized sexual functioning scores were correlated with self-reported health status in survivors (rho = 0.24, p = 0.009). The high prevalence of sexual dysfunction warrants additional studies focusing on the impact of changes in sexuality for patients as well as their partners. Future studies should also investigate which methods that are effective in preventing or treating sexual problems after allo-HCT.

A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation-a feasibility study.

PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context. METHODS: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses. RESULTS: Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses' experiences: CSNAT-I was relevant and became an eye opener; nurses' experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change. CONCLUSION: Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation.

OBJECTIVE: Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers' preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers. METHOD: This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data. RESULTS: Family caregivers with a higher education and those who were the patient's partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health. SIGNIFICANCE OF RESULTS: A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.

Suitability of haematopoietic cell donors: updated consensus recommendations from the WBMT standing committee on donor issues.

The contribution of related donors to the globally rising number of allogeneic haematopoietic stem cell transplantations (HSCT) remains increasingly important, particularly because of the growing use of haploidentical HSCT. Compared with the strict recommendations on the suitability for unrelated donors, criteria for related donors allow for more discretion and vary between centres. In 2015, the donor outcome committee of the Worldwide Network for Blood and Marrow Transplantation (WBMT) proposed consensus recommendations of suitability criteria for paediatric and adult related donors. This Review provides updates and additions to these recommendations from a panel of experts with global representation, including the WBMT, the European Society for Blood and Marrow Transplantation donor outcome committee, the Center for International Blood and Marrow Transplant Research donor health and safety committee, the US National Marrow Donor Program, and the World Marrow Donor Association, after review of the current literature and guidelines. Sections on the suitability of related donors who would not qualify as unrelated donors have been updated. Sections on communicable diseases, clonal haematopoiesis of indeterminate potential, paediatric aspects including psychological issues, and reporting on serious adverse events have been added. The intention of this Review is to support decision making, with the goal of minimising the medical risk to the donor and protecting the recipient from transmissible diseases.

Cancer incidence in healthy Swedish peripheral blood stem cell donors.

Granulocyte colony-stimulating factor (G-CSF) has been used for over 20 years to obtain peripheral blood stem cells from healthy donors for allogeneic stem cell transplantation. Concerns have been raised about a potentially increased cancer incidence in donors after donation, especially regarding haematological malignancies. In a prospective Swedish national cohort study, we studied the cancer incidence after donation in 1082 Swedish peripheral blood stem cell donors, donating between 1998 and 2014. The primary objective was to evaluate if the cancer incidence increased for donors treated with G-CSF. With a median follow-up time of 9.8 years, the incidence of haematological malignancies was 0.85 cases per 1000 person-years, and did not significantly differ from the incidence in age-, sex- and residence-matched population controls (hazard ratio 1.70, 95% confidence interval (CI) 0.79-3.64, p value 0.17), bone marrow donors or non-donating siblings. The total cancer incidence for peripheral blood stem cell donors was 6.0 cases per 1000 person-years, equal to the incidence in matched population controls (hazard ratio 1.03, 95% CI 0.78-1.36, p value 0.85), bone marrow donors or non-donating siblings. In this study of healthy peripheral blood stem cell donors, the cancer incidence was not increased after treatment with G-CSF.

Inequalities and short-term outcome among patients assessed as non-urgent in a Swedish ambulance service setting.

BACKGROUND: Within the ambulance service, assessment and referral of patients, especially those with non-urgent conditions, is a difficult and complicated task. Studies indicate that 12 to 20 percent of all patients are subjected to non-conveyance and discharged at the scene. There is lack of knowledge of what characterizes conveyed and non-conveyed patients. The aim of this study was to explore non-urgent patients who are conveyed or not conveyed to hospital and the short-term outcome of non-conveyance in a Swedish Ambulance Service setting. METHODS: This study has a descriptive, cross-sectional design. All patients who were prioritized as non-urgent were eligible for the study and 1,048 patients were followed-up in an administrative data system that stores information about the patients' trajectory in both primary and hospital care. RESULTS: More women than men were subjected to non-conveyance and most of the non-conveyed patients were left at home out-of-hours. 53% sought care again within 72 h. A large proportion of the non-conveyed patients were assessed as having unspecific symptoms. CONCLUSIONS: There are prominent gender differences in the context of non-conveyance where unspecific symptoms seem to be the main reason for being left at home. As many of the non-conveyed patients who did not receive any advice about further investigation or intervention sought care again within 72 h, the assessments may be insufficient or inaccurate.

Fear of graft rejection after heart transplantation - a nationwide cross-sectional cohort study.

BACKGROUND: Cellular rejection is most common 3-6 months after heart transplantation while chronic rejection, that is, cardiac allograft vasculopathy and malignancy are the most common causes of death in heart-transplant recipients beyond the third year after transplantation. However, the heart transplantation recipient's perceived threat of graft rejection has never been explored. AIM: The aim was to explore perceived threat of the risk of graft rejection and its relationship to psychological wellbeing, fatigue, health literacy, adherence and self-efficacy 1-5 years after heart transplantation. METHODS: In a nationwide, cross-sectional study that constituted part of the Self-management after thoracic transplantation project, 79 heart recipients (68% men and 32% women with a mean age of 52.6 years) were investigated after one year (n=28), two years (n=17), three years (n=11), four years (n=17) and five years (n=6). The instruments used were: the Perceived Threat of the Risk of Graft Rejection, the Psychological General Well-being, Self-efficacy for Managing Chronic Disease, the Multidimensional Fatigue Inventory, the Newest Vital Sign and the Basel Assessment of Adherence to Immunosuppressive Medication Scale. RESULTS: Twenty-eight per cent of the heart transplantation recipients perceived graft rejection as a serious threat. Intrusive anxiety was low and 37% perceived the threat of the risk of graft rejection as being beyond their control. Heart transplant recipients with high level of fatigue and low psychological well-being reported stronger intrusive anxiety and less control. CONCLUSION: A perceived threat of the risk of graft rejection is present in the everyday lives of heart transplantation recipients and is strongly related to overall psychological well-being.

Family caregivers' support needs during allo-HSCT-a longitudinal study.

PURPOSE: The study aimed to explore family caregivers' support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome. METHODS: This longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later. RESULTS: The two top support needs prior to allo-HSCT were 'knowing what to expect in the future' (79%) and 'dealing with your own feelings' (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up. CONCLUSION: The findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.

Symptom Occurrence and Distress after Heart Transplantation-A Nationwide Cross-Sectional Cohort Study.

Experiencing symptoms after heart transplantation may hamper the heart recipient's self-management which can lead to negative effects. We know little about symptom occurrence and distress after heart transplantation, especially in relation to sociodemographic variables. The aim of the study was to explore self-reported symptom occurrence and distress after heart transplantation and their relationship with self-reported psychological well-being and sociodemographic factors. This multicenter, cross-sectional, cohort study is associated with the Swedish national Self-Management After Thoracic Transplantation study (SMATT). Two questionnaires were distributed at the heart recipients' yearly follow-up, one to five years post-transplant at three Swedish university hospitals from 2014-2017. In a total 79 heart recipients, 54 men and 25 women, with a mean age 53 years returned the questionnaires. Symptoms occurred differently depending on type and duration of follow-up. The most common symptoms, trembling hands, and decreased libido were also the most distressing. Heart recipients most burdened by symptoms were those younger than 50 years, not working, with poor psychological well-being or living alone. Fatigue explained more than 60% of the variation in transplant specific well-being. In conclusion this study points at the target groups within the heart transplant population that needs person centered symptom management support where the focus should be on side-effects of the medication i.e., trembling hands as well as the patients' sexual health.

Specialist Ambulance Nurses' Perceptions of Nursing: A Phenomenographic Study.

Although nursing is the main area of interest in the curriculum of the specialist ambulance nursing program in the advanced level of education, there has been reported a lack of knowledge about nursing in within the ambulance service. The aim was to explore specialist ambulance nurses' perceptions of nursing, which were explored by employing a phenomenographic approach. The study comprises individual interviews with 19 strategically selected specialist ambulance nurses. The results showed seven descriptive categories emerged detailing the variations in how the specialist ambulance nurses perceive, understand, and conceptualize the phenomenon of nursing in the Swedish Ambulance Service. Four categories revealed the specialist ambulance nurses' qualitatively different perceptions of nursing, i.e., their role and responsibility, while three showed perceived barriers to assuming their role and responsibility, comprising culture and leadership, conditions, and framework. The seven categories are outlined in the outcome space. In conclusion, there is a very wide variety of perceptions of ambulance nursing within the Swedish Ambulance Service. There is a need for implement the nursing process both in the Specialist Nursing Pre-hospital Emergency Care education curriculum and within clinical practice. Further, there is a necessity to develop and implement nursing guidelines in the ambulance.

Implementing a Feasible Exercise Programme in an Allogeneic Haematopoietic Stem Cell Transplantation Setting-Impact on Physical Activity and Fatigue.

Physical exercise for patients treated with allogeneic haematopoietic stem cell transplantation (allo-HSCT) has shown positive effects on the quality of life and fatigue in experimental trials. However, there is a need for longitudinal evaluation of exercise programmes implemented in a real-world clinical setting. The aim of this prospective study was to evaluate the impact of an exercise programme introduced before allo-HSCT on physical activity and fatigue before, during and after in-patient care. A structured exercise programme, including strength and endurance exercises, was implemented at a Swedish university hospital four weeks before transplantation, continuing during in-patient care and after discharge. Between March 2016 and May 2018, 67 adult patients, 33 women and 34 men with a mean age of 55.5 years participated. Fatigue was measured by the Multidimensional Fatigue Inventory at four time points. The patients documented their exercises on a checklist each week during the entire study period. The fatigue trajectory differed between various sub-groups, thus individualized supervision and support to maintain motivation is needed. In conclusion, a structured yet realistic exercise programme before admission is beneficial for allo-HSCT patients in order to reduce fatigue and prepare them for transplantation both physically and mentally.

Chronic pain 1-5 years after heart transplantation-A nationwide cross-sectional cohort study.

Aim: To provide a multidimensional assessment of self-reported chronic pain 1-5 years after heart transplantation and its relationship with self-reported well-being, fatigue, recovery, self-efficacy and socio-economic factors and to explore differences between heart recipients and a cohort of lung recipients. Design: This multicentre, cross-sectional, cohort study is a part of the Swedish national Self-management after thoracic transplantation study. Methods: Six questionnaires were distributed at the heart recipients yearly follow-up (1-5 years) at three Swedish university hospitals 2014-2017. Results: The study group comprised of 79 heart recipients, 25 women and 54 men with a mean age of 52.68 years. Chronic pain among heart recipients was common and those not in paid employment as well as those with low psychological well-being and high general fatigue reported significantly more pain. Female heart recipients were more affected by pain. General health and vitality, general fatigue, physical fatigue and reduced activity were related to the pain intensity score. Relevance to clinical practice: As it is the duty of the healthcare system to provide adequate pain treatment, screening for pain should be a mandatory part of long-term follow-up.

Support in the context of allogeneic hematopoietic stem cell transplantation - The perspectives of family caregivers.

BACKGROUND AND AIM: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers' experiences of providing and receiving support during allo-HSCT. METHOD: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data. RESULTS: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health. CONCLUSIONS: Family caregivers' risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support.

Fear of graft rejection 1-5 years after lung transplantation-A nationwide cohort study.

AIM: To explore the perceived threat of the risk of graft rejection and its relationship to psychological general well-being and self-efficacy 1-5 years after lung transplantation. DESIGN: A nationwide, cross-sectional cohort study as a part of the Self-management after thoracic transplantation study. METHODS: A total of 117 lung transplant recipients due for their yearly follow-up one (N = 35), two (N = 28), three (N = 23), four (N = 20) and 5 years (N = 11) after lung transplantation were included. We used three instruments; the Perceived Threat of the Risk of Graft Rejection, the Psychological General Well-being and Self-efficacy in chronic illness. RESULTS: The lung recipients reported an overall low perceived threat of the risk of graft rejection with no gender differences. Intrusive anxiety explained 24.7% of the variance in the PGWB-sum (p ≤ 0.001) and makes a statistically significant (ß = -497; p ≤ 0.001) unique contribution to the overall psychological general well-being (95%CI 3.004-1.515).

Health Literacy Among Swedish Lung Transplant Recipients 1 to 5 Years After Transplantation.

INTRODUCTION: Understanding medical information and self-management ability is vital for good quality of life among transplant recipients. However, health literacy (HL) has never been investigated among lung transplant recipients. OBJECTIVE: This study investigated HL among Swedish lung transplant recipients 1 to 5 years after lung transplantation in relation to recovery, fatigue, adherence, cognitive function (CF), and relevant demographic variables. METHOD: This study was part of a cross-sectional, Swedish multicenter study 1 to 5 years post lung transplantation called Self-Management after Thoracic Transplantation. In total, 117 (57%) of 204 eligible lung recipients due for their yearly follow-up were included; 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) or 5 years (n = 11) after transplantation. The newest vital sign (NVS) instrument was used to measure the level of HL and contained 6 interview questions. The total scores ranged from 0 to 6 with 0 to 1= inadequate/low, 2 to 3 = marginal, 4 to 6 = adequate/good HL. RESULTS: Twenty-one percent reported an NVS score of 0 to 3 indicating low or marginal HL and 79% scored 4 to 6 indicating adequate HL. Recipients scoring low or marginal were represented in all 5 years posttransplant, and the majority were not able to work. Health literacy was not related to age, sex, fatigue, adherence, recovery, marital status, or self-reported CF. DISCUSSION: Health literacy was good among Swedish lung recipients. Providers should be aware that patients with low HL might present at any time posttransplant, and screening will help identify patients who need extra support.

Patients' Main Concerns About Having a Sibling Stem Cell Donor - A Grounded Theory Study.

BACKGROUND: There is limited knowledge about the perspective of patients undergoing allogeneic haematopoietic stem cell transplantation (HSCT) about having a sibling as donor. It is essential to understand the main concerns of stem cell recipients in order to enable nurses to provide person-centred care. OBJECTIVES: The study aim was to explore patients' main concerns about having a sibling stem cell donor and how the patients handle them, from immediately before until one year after transplantation. METHODS: Twenty-eight interviews were performed prospectively during one year with ten adult sibling stem cell recipients with a mean age of 52 years (range 19-68 years). The interviews were analyzed by the Grounded Theory method. RESULTS: The core category Recompensation summarises the process in the generated grounded theory including the three main categories; Invest, Compensate and Celebrate. Recompensation is defined as a lasting compensation given by the recipient to the sibling donor for the loss or harm suffered or effort made. The sense of having to reward, protect, appreciate, maintain peace and work on the relationship with the sibling donor at the same time as having to accept a serious illness, cope with their situation and promote their own recovery is strenuous for the recipients. CONCLUSION: The main concern for stem cell recipients during their first post-transplant year is to recompensate the sibling donor by investing, compensating and celebrating her/him. Although there is a positive aspect of recompensation, it can also imply pressure and guilt.