Allogeneic stem cell transplantation : patients’ and sibling donors’ perspectives

Allogeneic haematopoietic stem cell transplantation (hereafter HSCT) is an established treatment which offers a potential cure for a variety of diseases, mainly haematological malignancies. However, the treatment is also associated with significant risks of acute complications and late side effects, including mortality. The donor is either a relative, most often a sibling, or an unrelated registry donor. Methods for donating stem cells are bone marrow harvesting or peripheral blood stem cell collection. The most common and transient side effects from stem cell donation are fatigue, headache, bone and muscle pain. Major side effects are rare but there is a small risk of fatalities and serious adverse events. To facilitate the provision of adequate information and care of patients undergoing HSCT and their sibling donors there is a need to explore and study their situations and experiences. This thesis aims to investigate patients’ and sibling donors’ perspectives of HSCT. The first study investigated changes in the patients’ quality of life (QoL) from before HSCT to 100 days and 12 months after the transplantation, and identified factors associated with the changes. The study was completed by 40 patients who answered the questionnaires (FACT-BMT and FACIT-Sp) on all three occasions. The majority of the dimensions covered in QoL deteriorated from before and up to 100 days and 12 months after HSCT, except for the emotional well-being which improved. The factors associated with reduced QoL over time were significant infections, female gender and transplantation with stem cells from a sibling donor. Factors associated with improved emotional well-being over time were absence of significant infections and marital status ‘other than married/cohabiting’. In the second study an information and care model (IC model) for potential sibling stem cell donors was evaluated. A questionnaire survey was answered by 148 siblings who had been informed about and asked to undergo HLA typing by the IC model. The majority of the potential sibling donors were satisfied with the information and care they had received. However, areas for improvement were highlighted, such as a wish to have the results from the HLA typing conveyed through personal contact and that the complicating influence of health professionals and relatives on their decision to undergo HLA typing and possible donation could be prevented. In the third study ten HSCT patients were interviewed immediately before transplantation regarding their experiences of having a sibling as donor. The results, with the main theme Being in no man’s land, show that the patients are in a complex situation before transplantation, experiencing a mixture of emotions and thoughts. In the fourth study ten sibling donors, where the recipients were the participants in Study III, were interviewed regarding their experiences before donation of being a stem cell donor for a sick sibling. The main theme, Being a cog in a big wheel, in the results shows that the sibling donors go through a complex process before donation, a situation they have not volunteered for but have got into accidently, experiencing a mixture of emotions and thoughts. The results also show that the sibling donors do not usually reveal their thoughts and emotions about being a donor to anyone. The patients’ and sibling donors’ experiences can be seen to be connected to each other, however, they have not usually talked to each other about their emotions and thoughts. To conclude, HSCT patients’ overall QoL and the majority of the dimensions of QoL deteriorated from before until 100 days and 12 months after HSCT, while their emotional well-being improved. The privacy and free choice of potential sibling donors have to be respected and the information and care of patients and their sibling donors should be kept separate. Health professionals should bear in mind that both patients with a sibling as donor and sibling donors are in complex situations before transplantation and donation, experiencing a mixture of emotions and thoughts. Further, it is important to individualize the information and care for HSCT patients and their sibling donors in a supportive and professional manner

Impact of adherence in outcome of long-term survivors

Hematopoietic Stem Cell Transplantation (HSCT) for acute leukemia and myelodysplastic syndromes offers the highest chance for long-term survival. Higher mortality rates among HSCT survivors highlight the need for lifelong multidisciplinary follow-up of late effects in HSCT survivors. Adherence describes the extent to which survivors follow the medical recommendations. Adherence is not limited exclusively to medication but it encompasses all health-related behaviors that are recommended by healthcare providers. Non-adherence to medications, guidelines, as well as unhealthy health behavior in HSCT survivors can all be caused by interacting factors. Lifestyle factors have an impact on the HSCT-survivors’ health. High adherence to scheduled oral care correlates with lower severity of oral mucositis. The causes for non-adherence are often beyond the patient’s control. Non-adherence to medication protocols and the adoption of unhealthy behavior habits are further influenced by multiple interacting factors

Perceptions of experiences of having a sibling stem cell donor

Objective: The aim was to explore stem cell recipients’ perceptions of experiences of having a sibling donor from pretransplantation to one year afterwards in order to support their learning process.Methods: Ten adult recipients, five women and four men, with a mean age of 52 years (19-68 years) receiving stem cells from a sibling donor were included consecutively. We used a phenomenographic approach to analyse the 28 open-ended interviews that took place before transplantation and three months and one year afterwards.Results: Ten categories emerged comprising 110 different perceptions pertaining to: Advantages, Acknowledgement, Risk evaluation, Complexity, Family impact, Non-directed donors, Self-identity, Facing the reality, Knowledge seeking and Caring encounters. Three distinct phases of the learning process were identified from before transplantation to one year afterwards, i.e., risk-benefit analysis, outcome expectations and facing the reality.Conclusions: Before transplantation the recipients had many perceptions about having a sibling donor and focused on a thorough risk versus benefit analysis for both themselves and the donor. Three months after transplantation the recipients sought knowledge in order to have realistic expectations and comprehend their future. One year after transplantation the recipients had few perceptions and focused on facing the reality, irrespective of whether the outcome was good or bad. The generic perceptions of the recipients over time were that serious blood diseases are burdensome and lethal, while treatment should include continuity of care

Sibling stem cell donors' perceptions of experiences of donation

Objective: What and when should we tell sibling donors about the donation process? Although we provide extensive information to sibling stem cell donors, we lack knowledge of their perceptions and how they change during the donation process. Therefore, the aim of this study was to explore sibling donors’ perceptions of experiences of stem cell donation from pre-donation to one year afterwards.Methods: Applying a phenomenographic approach we performed an in depth, longitudinal exploration of adult sibling donors’ perceptions of experiences based on 29 open-ended interviews performed before donation, as well as three and twelve months afterwards. Ten consecutive adult sibling donors with a median age of 54 years (range 26-66 years) due to donate stem cells at one Swedish transplant centre participated.Results: A detailed learning process among sibling stem cell donors during the first year after donation was identified through 83 different perceptions pertaining to motive, obligation, responsibility, preparation, circumstances, recovery and relationship. The perceptions changed over the first year after donation due to experiences of duty, pressure, burden, security, learning, struggle and closeness. Educational strategies and tools must cover all these perceptions to narrow the sibling donors’ knowledge gap and support their learning process.Conclusions: In the course of the year sibling stem cell donors’ perceptions of their experiences change and thereby their need for education, information and support. As the learning process stems from a range of experiences, there is a need to individualise the care and further study sibling stem cell donors’ levels of burden and distress

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

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

Non-adherence to immunosuppressants after lung transplantation- a common risk behavior

Background:After lung transplantation, life-long treatment with immunosuppressive medication is required to prevent rejection and graft loss but adherence to immunosuppressive treatment may be difficult for the lung recipient. Adherence is essential and non-adherence to immunosuppressive treatment can lead to graft loss and death.Objective:The aim of this cross-sectional study was to investigate the prevalence of non-adherence 1 to 5 years after lung transplantation in relation to symptom burden, health literacy, psychological well-being and relevant demographic variables.Methods:117 adult lung recipients, due for their annual follow-up 1-5 years after lung transplantation, participated. Four self-report instruments were used for assessment: the Basel Assessment of Adherence with Immunosuppressive Medication Scale, the Newest Vital Sign, the Psychological General Well-Being and the Organ Transplant Symptom and Wellbeing Instrument. Statistical analysis was performed.Results:Thirty percent of the lung recipients were non-adherent. The most common non-adherence dimension was not taking a dose (43%) and not being punctual with the regimen (80%). Of those working full time or part time, 43% were non-adherent (p=.032). A higher level of non-adherence was reported a long time after LuTx with the highest level at the 3-year follow-up.Conclusion:The level of non-adherence among lung recipients was high. The highest levels were found among those who had returned to work. Non-adherence increased with time after lung transplantation

Rapid Implementation of Telehealth Video Visits in Cancer Care – The Perspectives of Patients and Healthcare Professionals

Background: Due to the COVID-19 pandemic, physical visits were replaced by video visits. The aim of this study was to evaluatethe rapid implementation of telehealth video visits in cancer care from the perspectives of patients and healthcare professionals togain knowledge about when physical visits can be replaced by video visits and to identify the improvements needed to optimizecancer care.Material and Methods: Questionnaires were designed for the purpose of the study and sent out during March 2021 to adult patients(≥ 18 years) who had participated in video visits, healthcare professionals who had conducted video visits and scheduling staff whohad scheduled video visits from April to December 2020.Results: 99 patients, 17 healthcare professionals and 14 scheduling staff answered the questionnaires. Although high levels ofsatisfaction were reported, a need for improvement was identified. Most of the respondents were positive about continuing with videovisits, which functioned better with a familiar patient in a follow-up situation, especially for those living far from the hospital, frailpatients, and those in need of frequent follow-up. The necessary improvements mainly concerned technical issues pertaining to thedigital platform, training and support.Conclusion: Telehealth video visits are a good complement to physical visits and phone calls. There is a need to optimise theuse of video visits regarding types of visit (i.e., new visits, during treatment, follow-up, etc.) for selected patients with improvedinstructions, guidelines and education as well as a safe and user-friendly digital tool

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

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