Organ donation and transplantation: Awareness and roles of healthcare professionals-A systematic literature review.

AIMS AND OBJECTIVES: To examine the role of healthcare professionals in the organ donation and transplantation process. BACKGROUND: Globally, there remains a perennial disequilibrium between organ donation and organ transplantation. Several factors account for this disequilibrium; however, as healthcare professionals are not only strategically positioned as the primary intermediaries between organ donors and transplant recipients, but also professionally situated as the implementers of organ donation and transplantation processes, they are often blamed for the global organ shortage. DESIGN: Mixed-method systematic review using the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols 2015 checklist. METHODS: Databases were searched including CINAHL, MEDLINE, Web of Science and EMBASE using the search terms "organ donation," "healthcare professionals," "awareness" and "roles" to retrieve relevant publications. RESULTS: Thirteen publications met the inclusion criteria. The global organ shortage is neither contingent upon unavailability of suitable organs nor exclusively dependent upon healthcare professionals. Instead, the existence of disequilibrium between organ donation and transplantation is necessitated by a web of factors. These include the following: healthcare professionals' attitudes towards, and experience of, the organ donation and transplantation process, underpinned by professional education, specialist clinical area and duration of professional practice; conflicts of interests; ethical dilemmas; altruistic values towards organ donation; and varied organ donation legislations in different legal jurisdictions. CONCLUSION: This review maintains that if this web of factors is to be adequately addressed by healthcare systems in different global and legal jurisdictions, there should be sufficient organs voluntarily donated to meet all transplantation needs. RELEVANCE TO CLINICAL PRACTICE: There is a suggestion that healthcare professionals partly account for the global shortage in organ donation, but there is a need to examine how healthcare professionals' roles, knowledge, awareness, skills and competencies might impact upon the organ donation and transplantation process.

PAlliative Care in chronic Kidney diSease: the PACKS study--quality of life, decision making, costs and impact on carers in people managed without dialysis.

BACKGROUND: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK. METHODS: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to 'opt-in' with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists. DISCUSSION: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

A literature review of end-stage renal disease and cachexia: understanding experience to inform evidence-based healthcare.

INTRODUCTION: Cachexia is a major cause of morbidity and mortality in people who have end-stage renal disease (ESRD). The majority of research into cachexia in ESRD has focused on the biological aspects of the syndrome and potential treatment modalities. While this research is necessary, it predominately focuses on the physical impact of cachexia in ESRD. The multi-dimensional psychosocial ramifications of this syndrome have been highlighted in other end-stage illness trajectories, but have not been systematically explored in persons who have ESRD. AIM: This paper discusses why this research is necessary, alongside further studies to help define the pathophysiology of this syndrome. CONCLUSION: The rich insightful data gained from understanding the patients' illness experience will positively contribute to the limited knowledge base available and inform future holistic patient-centred care delivery which recognises and responds to not only the biological but also the psychosocial impact of cachexia.