Maximising access to kidney transplantation: A single-centre audit of people receiving dialysis.

BACKGROUND: Despite transplantation being well documented as the renal replacement therapy option that gives the best morbidity and mortality outcomes, the best quality of life and the best value for healthcare dollar, not all patients are on a kidney transplant waiting list. OBJECTIVES: The aims of this study were (1) to explore possible reasons for a demonstrated a higher rate of people being listed as suitable for transplant in a non-transplanting unit and (2) to describe a formal process of review and referral as a method for maximising the number of people gaining access to the transplant waiting list. METHODS: We prospectively audited all patients who were undergoing dialysis in our metropolitan, non-transplanting renal unit annually over six years to determine whether not being on the transplant waiting list was in keeping with available eligibility guidelines of medical and behavioural criteria. RESULTS: In every age group, the percentage of patients listed for transplant was higher than that seen in national data. The most common reasons for people not to be listed were malignancy, obesity and cardiovascular disease. This unit's patients had fewer smokers, less females and less Aboriginal and Torres Strait Islanders which may have contributed towards a higher rate of activation on the list. CONCLUSION: In this dialysis patient population having a formal process of review for suitability and referral, as well as a specialist renal transplant coordinator nurse positively affected the number of patients being activated on the transplant waiting list.

The experience of waiting for a kidney transplant: A qualitative study.

BACKGROUND: In Australia over 1100 people are living on dialysis while waiting for a kidney transplant from a deceased donor. Worldwide there are an estimated 170,000 people who wait an average of three years before an organ becomes available. OBJECTIVE: To provide an understanding of the lived experience of people waiting on dialysis for a kidney transplant from a deceased donor. APPROACH: A qualitative descriptive research design was used. Participants were recruited from a large metropolitan hospital. Two focus groups were conducted with six participants ranging in age from 29-63 years, with dialysis experience of 10-72 months. Data saturation was achieved and thematic analysis was used to interpret the data providing a descriptive account of the experience of waiting for a kidney transplant. FINDINGS: Waiting for a kidney transplant takes place in the context of living on dialysis. Four main themes were identified: living on dialysis is physically and mentally demanding; living with uncertainty; altered relationship dynamics; and feelings towards the deceased donor. CONCLUSIONS: This study provides a descriptive summary of what it is like to live on dialysis while waiting for a kidney transplant from a deceased donor from the perspective of the person waiting. People are burdened by; uncertainty; the experience of the dialysis therapy; and the thought of the human cost of transplantation. These findings suggest that this cohort may benefit from strategies to relieve uncertainty such as effective communication from the treating team and peer support from the dialysis community.

The experiences of adults who are on dialysis and waiting for a renal transplant from a deceased donor: a systematic review.

BACKGROUND: Kidney transplantation has been recognized as the best renal replacement therapy option for people with end stage renal disease. With an estimated 170,000 people waiting for a kidney transplant around the world and a limited supply of donor organs, the waiting time is often prolonged for many years. OBJECTIVES: The aim of this review was to examine the existing evidence of patients' experiences of living on dialysis and waiting for a renal transplant from a deceased donor. TYPES OF PARTICIPANTS: This review considered studies that included adult patients aged 18 years and over who had been on dialysis (hemodialysis or peritoneal dialysis) for up to 15 years and who were waiting for a renal transplant from a deceased donor. Types of intervention(s)/phenomena of interest: The phenomena of interest were the experiences of adults waiting for a renal transplant from a deceased donor and more specifically, the impact of waiting on their lifestyle and day to day living. Types of studies: This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Types of outcomes: This review considered studies that included the experiences of people who were waiting on dialysis for a kidney transplant from a deceased donor. SEARCH STRATEGY: The search strategy aimed to find both published and unpublished studies through electronic databases, reference list searches and the World Wide Web. Extensive searches were undertaken of the CINAHL, Embase, Medline and PsychInfo databases of published literature, the Cochrane Database of Systematic Reviews and the Virginia Henderson International Nursing Library, OpenGrey and the New York Academy of Medicine databases of unpublished literature. METHODOLOGICAL QUALITY: Each study was assessed for methodological quality by two independent reviewers using the Joanna Briggs Institute Qualitative Assessment and Review Instrument checklist. Disagreements between the reviewers were resolved through discussion or with a third reviewer. DATA COLLECTION: Qualitative data was extracted from papers included in the review using the standardized data extraction tool from JBI-Qualitative Assessment and Review Instrument. DATA SYNTHESIS: Qualitative research findings were pooled to generate a set of statements that represented the aggregation and categorizing of these findings on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis in order to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. RESULTS: A total of 12 studies were included in the final review. Thirty-seven findings from the 12 studies were extracted and aggregated into 11 categories and then into three synthesized findings. The three synthesized findings were: 1. People who are waiting for a kidney transplant from a deceased donor are affected by the experience of living on dialysis with end stage renal disease and its impact on their physical health and normal activities of living. 2. The experience of waiting for a kidney transplant from a deceased donor impacts a person's psychological wellbeing. 3. People who are waiting for a kidney transplant from a deceased donor place value on relationships and being part of a community. The experience of waiting for a renal transplant from a deceased donor while living on dialysis with end stage renal disease changes a person's relationships. CONCLUSIONS: Synthesized findings of the review conclude that people who are waiting for a kidney transplant from a deceased donor live with the physical effects of a life limiting chronic illness and dialysis therapy. Waiting for a kidney transplant is psychologically challenging. People waiting for a kidney transplant value knowledge, although the information they require to alleviate the uncertainty they feel is not available. The dynamics of relationships with family and friends are affected by the experience of waiting for a kidney transplant. People can feel isolated from others leading a 'normal' life, while new relationships are developed within the medical team and community of dialysis patients. IMPLICATIONS FOR PRACTICE: There is limited evidence from the review to support the development of recommendations for clinical practice. Healthcare workers caring for people who are waiting for a kidney transplant from a deceased donor should be mindful of the physical and lifestyle effects of living on dialysis with end stage renal disease. Wherever possible, information should be provided to alleviate the stress and anxiety related to the uncertainty of waiting. The experience of waiting is stressful and people waiting for a kidney transplant may require support and reassurance. It is important to recognize that there are people within communities who may also benefit from receiving information and encouragement. Significant community members should be included in invitations to appointments and education sessions with the consent of the person being treated. IMPLICATIONS FOR RESEARCH: Future studies should be undertaken exclusively with people waiting for a kidney transplant from a deceased donor. Qualitative research designs such phenomenology and grounded theory could be used to investigate the psychological experience of waiting and the relationship between hope, uncertainty and knowledge. Quantitative studies using validated tools could also be conducted. By producing more evidence relating to this significant specific patient population, interventions to improve the experience of waiting could be developed and trialed.