Multisystemic engagement & nephrology based educational intervention: a randomized controlled trial protocol on the kidney team at home-study

Abstract Background Living donor kidney transplantation (LDKT) is the most successful form of renal replacement therapy in terms of wait time and survival rates. However, we observed a significant inequality in the number of LDKT performed between the Dutch and the non-Dutch patients. The objective of this study is to adapt, implement and test an educational home-based intervention to contribute to the reduction of this inequality. Our aim is to establish this through guided communication together with the social network of the patients in an attempt that well-informed decisions regarding renal replacement therapy can be made: Multisystemic Engagement & Nephrology. This manuscript is a detailed description of the Kidney Team At Home-study protocol. Methods and design All patients (>18 yrs) that are referred to the pre-transplantation outpatient clinic are eligible to participate in the study. Patients will be randomly assigned to either an experimental or a control group. The control group will continue to receive standard care. The experimental group will receive standard care plus a home-based educational intervention. The intervention consists of two sessions at the patient’s home, an initial session with the patient and a second session for which individuals from their social network are invited to take part. Based on the literature and behavioural change theories we hypothesize that reducing hurdles in knowledge, risk perception, subjective norm, self-efficacy, and communication contribute to well-informed decision making and reducing inequality in accessing LDKT programs. A change in these factors is consequently our primary outcome-measure. Based on power calculations, we aim to include 160 patients over a period of two years. Discussion If we are able to show that this home-based group educational intervention contributes to 1) achieving well-informed decision regarding treatment and 2) reducing the inequality in LDKT, the quality of life of patients will be improved while healthcare costs are reduced. As the intervention is investigated in a random heterogeneous patient group in daily practice, the transfer to clinical practice in other kidney transplant centers should be relatively easy. Trial registration Netherlands Trial Register, NTR2730.</p

Living donor kidney transplantation among ethnic minorities in the Netherlands: A model for breaking the hurdles

Objective: Despite living donor kidney transplantation (LDKT) being the optimal treatment option for patients with end-stage renal disease, we observed a significant inequality in the number of LDKT performed between patients of Dutch versus non-Dutch descent. We conducted a focus group study to explore modifiable hurdles to LDKT. Methods: Focus group discussions and in-depth interviews were conducted among 50 end-stage renal patients. Analyses were conducted according to 'grounded theory' using Atlas.ti. Results: We found nearly all patients to be in favor of LDKT (96%). However, multiple factors played a role in considering LDKT. Four potentially modifiable hurdles were derived: (1) inadequate patient education, (2) impeding cognitions and emotions, (3) restrictive social influences, and (4) suboptimal communication. With regard to solutions, we found that our patients were open to home-based group education on renal replacement therapy options (88% in favor). Conclusion: The study highlights the need for sensitivity and awareness of the influence of cultural factors on decision-making when discussing living donation with culturally diverse populations. Practice implications: Since the majority of our patients were open to a tailored group education in their own homes, we see this as an opportunity to address factors that influence equality in access to LDKT

Religious attitudes towards living kidney donation among Dutch renal patients

Terminal kidney patients are faced with lower quality of life, restricted diets and higher morbidity and mortality rates while waiting for deceased donor kidney transplantation. Fortunately, living kidney donation has proven to be a better treatment alternative (e.g. in terms of waiting time and graft survival rates). We observed an inequality in the number of living kidney transplantations performed between the non-European and the European patients in our