Young adults’ experiences of dialysis and kidney transplant decision-making.

Background Young adults with end-stage kidney disease make decisions to select a renal replacement therapy choice with the support of healthcare professionals once their kidneys fail. However, little is known about how they experience dialysis and kidney transplant decision-making and the effects on their well-being. Aim The aim was to explore how young adults who are diagnosed with end-stage kidney disease experience dialysis and/or kidney transplant decision-making, understand the meaning of their lived experiences, and investigate the effects of decision-making andchoice on their well-being. Methodology Interpretive phenomenology, informed by Heidegger’s hermeneutic principles, was used to purposefully recruit young adults with end-stage kidney disease through social media. A qualitative design using semi-structured interviews were conducted and the data analysed using Braun and Clarke’s thematic analysis approach. Findings Eighteen participants aged 18-30 years old were interviewed. Five themes developed from the analysis include: (1) world turned upside down; (2) experience of information delivery about options; (3) the experience of making my voice heard; (4) experiencing the new normal; and (5) the impact of decision-making and choice on well-being. Conclusion and original contribution This study illuminates our understanding of how young adults experience kidney therapy decision-making and their unmet informational and decisional needs. The majority struggle to cope due to the lack of support during the decision-making process. Kidney therapy decision-making and experiencing choice about therapies affect young adults’whole world and significantly impact their physical, psychosocial, and mental well-being.This thesis proposes a four-talk model, adding a new phase (‘implement talk’) to the existing phases (team talk, option talk, decision talk), to address some of the young adults’ unmet decisional needs and better support their well-being during the decision-making process

Young adults' experiences of dialysis or kidney transplant decision-making

Young adults with kidney failure experience disruptions in their education, growth development, building relationships and face employment problems during the journey of the disease (Murray et al., 2014). Once their kidneys fail, they need to make a choice about which dialysis treatment to have or whether they prefer the option of kidney transplant. So, they have to work with their health care professionals to make decisions to select their preferred dialysis or kidney transplant choice. This is known as shared decision-making. The three-talk model of shared decision making shown on the screen is used as a guide by health care professionals to encourage discussions of treatment options with patients during the shared decision-making process (Elwyn et al., 2018). A recent report by the renal registry highlighted that over 50% of young adults with kidney failure started haemodialysis as their first treatment option and less of them (14.1%) received a kidney transplant, although kidney transplantation is recommended as the best treatment (NICE, 2014). Evidence suggests that among adults with kidney failure, not all patients receive timely information on kidney failure treatment options to enable them share in the decision-making or make an informed choice, which falls short of the recommended guidelines. It matters because little is known about young adults with kidney failure experiences of dialysis or kidney transplant decision-making and how the decision to select a dialysis or kidney transplant choice may have impacted on their psychosocial and mental well-being. This is where my study plays an important role. Our involvement group who have dialysis and kidney transplant experiences as children and young adults, suggested that the study should focus on the impact of decision-making on the psychosocial and mental well-being of young adults as it was a neglected area and their views incorporated. My study will explore young adults’ experiences of decision-making to select a dialysis or kidney transplant choice. It will examine the impact of dialysis or kidney transplant decision-making on young adults psychosocial and mental well-being. Lastly it will seek to understand how young adults can be better supported during the decision-making process to enhance their coping abilities and participation in the decision-making process

Involvement of young people in a qualitative study that seeks to explore experiences of renal replacement therapy choice selection

Introduction: Patient and Public involvement (PPI) has become one of the drivers in health care and seen as an integral part of the research process. PPI promotes research questions that reflect the priorities and concerns of the relevant population and develops outcomes that are important to patients (INVOLVE, 2012; Evans et al, 2014; Hickey et al, 2018). Young adults with end-stage kidney disease are supported by clinicians and their families to make decisions about their preferred renal replacement therapy (NICE, 2018). However, they can become overwhelmed with the burden of long-term chronic illness and often struggle to accept diagnosis and prognosis and cope with the complex management of their condition (Coulter and Collins, 2011; Ritchie et al., 2012). They can consequently become disengaged with the service and less involved in their care (Ritchie et al, 2012; Robinski et al, 2014). The current study explores young people’s experiences of renal replacement therapy choice selection. The study team has involved young people in the study’s development. Aims and objectives: The aim of the involvement group in this study is to involve the young people in all stages of the research process: ensuring that the research question has the correct focus, that the participant information sheet is clear and that the recruitment strategy is appropriate. In due course, the young people’s group will be involved in qualitative data analysis and in dissemination of findings. Method: The involvement group comprised three people with experiences of dialysis and kidney transplant treatment as children and young adults. They were recruited via existing networks in the research team. A role description on what was to be expected of the group members was discussed, alongside what was expected from the research team (training and travel expenses for example). Communication is via face-to face meetings and also by email. This first face-to-face meeting discussed and shaped the research question, and the possible recruitment process. Further email discussions have explored the participant information sheet, consent forms plus the development of the video and poster advert to aid recruitment. Results: The impact of PPI on the research process is already providing valuable insights into how the research design should be conducted. The first face-to-face meeting with the group highlighted the difficulties that young people face when making choice of renal replacement therapy, especially psychosocial impact and mental well-being, so the impact the choice makes on well-being was added as a secondary research question. The acceptability of the recruitment method (via social media) was discussed and a video advert was developed for the recruitment process. Members also contributed to the review of some of the research documents; participant information sheet, consent forms, posters, research proposal and piloted a validation questionnaire for suitability. Impact: Involvement of patients helped situate the study to meet the current needs of young adults diagnosed with end stage renal disease who are faced with choosing dialysis or kidney transplantation

Scale-up of Malaria Rapid Diagnostic Tests and Artemisinin-Based Combination Therapy: Challenges and Perspectives in Sub-Saharan Africa.

Guido Bastiaens and colleagues describe barriers to achieving scale-up and appropriate use of rapid diagnostic tests and artemisinin-based combination therapy for malaria in sub-Saharan Africa. Please see later in the article for the Editors' Summary

Antibody levels to multiple malaria vaccine candidate antigens in relation to clinical malaria episodes in children in the Kasena-Nankana district of Northern Ghana

BACKGROUND: Considering the natural history of malaria of continued susceptibility to infection and episodes of illness that decline in frequency and severity over time, studies which attempt to relate immune response to protection must be longitudinal and have clearly specified definitions of immune status. Putative vaccines are expected to protect against infection, mild or severe disease or reduce transmission, but so far it has not been easy to clearly establish what constitutes protective immunity or how this develops naturally, especially among the affected target groups. The present study was done in under six year old children to identify malaria antigens which induce antibodies that correlate with protection from Plasmodium falciparum malaria. METHODS: In this longitudinal study, the multiplex assay was used to measure IgG antibody levels to 10 malaria antigens (GLURP R0, GLURP R2, MSP3 FVO, AMA1 FVO, AMA1 LR32, AMA1 3D7, MSP1 3D7, MSP1 FVO, LSA-1and EBA175RII) in 325 children aged 1 to 6 years in the Kassena Nankana district of northern Ghana. The antigen specific antibody levels were then related to the risk of clinical malaria over the ensuing year using a negative binomial regression model. RESULTS: IgG levels generally increased with age. The risk of clinical malaria decreased with increasing antibody levels. Except for FMPOII-LSA, (p = 0.05), higher IgG levels were associated with reduced risk of clinical malaria (defined as axillary temperature ≥37.5°C and parasitaemia of ≥5000 parasites/ul blood) in a univariate analysis, upon correcting for the confounding effect of age. However, in a combined multiple regression analysis, only IgG levels to MSP1-3D7 (Incidence rate ratio = 0.84, [95% C.I.= 0.73, 0.97, P = 0.02]) and AMA1 3D7 (IRR = 0.84 [95% C.I.= 0.74, 0.96, P = 0.01]) were associated with a reduced risk of clinical malaria over one year of morbidity surveillance. CONCLUSION: The data from this study support the view that a multivalent vaccine involving different antigens is most likely to be more effective than a monovalent one. Functional assays, like the parasite growth inhibition assay will be necessary to confirm if these associations reflect functional roles of antibodies to MSP1-3D7 and AMA1-3D7 in this population