Home-based Education Increases Knowledge, Communication and Living Donor Kidney Transplantations

__Abstract__ A focus group approach was used to disclose transplant candidates’ view on patient-tailored interventions that could target modifiable hurdles to LDKT. A majority would appreciate an home-based educational intervention (chapter 2). Solving knowledge insufficiencies regarding the various renal replacement therapies would be one of the main goals. Additionally, patients would welcome a discussion on living donation with members of their social network. Such interventions would also be potentially effective in addressing other psychosocial hurdles to LDKT within patients’ social network. Patients report that a non-persuasive approach is appreciated since health care professionals will intrude families’ comfort zone (chapter 2). Yet, if the discussion on LDKT is not initiated by those present during the home-intervention, the educator should address the issue in a non-persuasive manner. The way in which the subject of living donation is addressed warrants cultural sensitivity. For instance, cultures in which modesty is a strongly valued tradition an indirect communication style is more appropriate (chapter 3). An indirect communication style would for example be: “Which aspects of the education on renal replacement therapies have drawn your attention specifically?” A more direct style would be: “Has someone in this room ever considered to be a living kidney donor?” Educators should try to tailor the education and the communication style on a case-by-case basis. Therefore, acquiring knowledge on the family values and norms is needed in order to receive optimal family engagement. In addition to a tailored and non-persuasive home-based educational intervention, patients and members of the social network who do not speak the language of the educator would value an independent interpreter. Besides these subtle (communication style) and obvious (use of an interpreter) differences, no further qualitative or quantitative evidence was found for cultural differences in factors hampering the access to LDKT. Neither did patients report on other conditions that need attention before implementing an home-based education. This thesis and other literature show that knowledge is repeatedly found as one of the important factors for promoting the access to LDKT. Yet, prior to the manuscript in chapter 6 no validated and standardized tests on knowledge among renal patients regarding kidney disease and all treatment options existed. Therefore, part of this thesis was devoted to the development and testing of the psychometric properties of a questionnaire that assesses patients’ knowledge on kidney disease and renal replacement therapies. That effort resulted in a 21-item list with two stable dimensions containing items on ‘Dialysis and Transplantation’ (11 items) and ‘Living Donation’ (10 items). Such a thorough questionnaire enables reliable testing of patient’s knowledge on kidney disease and treatment options. Therefore, this questionnaire was used to test potential changes in knowledge due to the home-based intervention. Chapter 7 present the development and protocol of the tested home-based intervention. Patients and their family/friends who received the home-based intervention had two home visits in addition to the regular hospital information. The first home with only the patient was intended to get an idea of patient’s family and culture. The patient could then invite family and friends for the second home visit (the educational intervention). The aim of the educational intervention was to provide information on kidney disease, dialysis, kidney transplantation and living donation. Central to the intervention was promoting the communication on the different treatment options between the patient and members from his/her social network. For this communication techniques from multisystem therapy were used. This therapy systematically considers the stability of relations and ensures that the conversation takes place within a framework of respect for individual feelings and autonomy. For this the quality system of multisystemic therapy was applied which involves structural supervision and anonymous/independent quality checks. Results of this home-based educational intervention show favorable effects (chapter 8). The patient and family/friends show a significant improvement in their knowledge and an improvement in their communication regarding the various treatment options. Moreover, analyses showed that the home-based intervention results in a fivefold increase in the number of potential donors tissue typed and actual living donations. Given the success and the limited side-effects of this approach implementation in other transplant centers is strongly recommended for transplant candidates without a living donor. Further research on the generalizability of the intervention and the cost-effectiveness is warranted

Living kidney donation among ethnic minorities: A Dutch qualitative study on attitudes, communication, knowledge and needs of kidney patients

Background: Terminal kidney patients are faced with lower quality of life during dialysis treatment, restricted diets and high morbidity and mortality rates while waiting for a deceased donor kidney transplantation. Fortunately, living donor kidney transplantation offers an alternative with considerable advantages in terms of waiting time and graft survival rates. Nevertheless, we observed an inequality in the proportion of living kidney transplantations performed between the non-European patients and the European patients in our centre. To date little is known about the factors contributing towards this racial disparity. Previous research from our centre did not find any medical reasons to explain this racial disparity. We believe that non-medical psychosocial and cultural factors predominantly account for this discrepancy. Purpose Focus group discussions and in-depth interviews were conducted in order to gain insight in the attitudes, (non-)communication and knowledge of our non-European patients (compared to European patients) regarding living donor kidney transplantation (LDKT). Additionally, we investigated their attitudes towards professional support in finding an eligible living donor. Methods: The interviews were held in line with the focus group method and analyzed according to the grounded theory. The interviews were focused on six main topics (kidney transplantation, living kidney donation, communication, information, knowledge and intervention needs). European patients were included as a comparison group. The qualitative data analyses were performed in Atlas.ti. Results:We found nearly all our patient to be in favour of a living kidney transplantation (96%). However multiple prohibiting intertwined factors play a role when actually considering a living donor. We found four major barriers to the living donor transplantation process in our non-European patients: 1) not (so easily) comprehensible non-patient-centered information 2) cognitions and emotions (based on fears, concerns and misconceptions) 3) a state of basically non-communication with the potential donor(s) on this issue (as a consequence of personal and cultural beliefs) 4) and social influences. We also found some similar factors playing a role in the donation course of our European patients without a living donor. Finally, our patients held a welcoming attitude towards an intervention aimed at assisting them getting though the living donation program. Discussion: This study has identified several modifiable determinants underlying racial disparity in our living donor kidney transplantation program and investigated patients’ attitude towards two interventions aimed at alleviating this inequality. We realize that our list of barriers may not be thorough enough and surely more is to be said on this topic, the findings offer possible targets for intervention. In accordance with our patients’ preference, we argue that a home-based educatio

Eindrapportage project ‘Nierteam aan Huis’ 2016-2020

Het ‘Nierteam aan Huis’ (NTAH) project is in de periode van 2016-2018 uitgevoerd. NTAH is een voorlichtingsprogramma voor patiënten met terminale nierinsufficiëntie en wordt gegeven bij de patiënten thuis. De patiënt en hun sociale netwerk worden voorgelicht over terminale nierinsufficiëntie en de behandelvormen hiervan door daarin getrainde voorlichters. Dit project toonde aan dat deze unieke vorm van voorlichting in verschillende regio’s in Nederland implementeerbaar is met goede resultaten op effectiviteit en kwaliteit. Bovendien bleek uit onze analyse dat NTAH bijzonder kosteneffectief is. Om deze reden bevelen wij aan om de thuisvoorlichting landelijk in te voeren en financieel mogelijk te maken. ACHTERGROND EN DOEL Het project is gebaseerd op twee voorgaande gecontroleerde studies in de regio Rotterdam. Deze studies leidden tot een betere kennis over behandelmogelijkheden bij patiënten en hun sociale omgeving en tot een betere communicatie. Ook werden meer patiënten getransplanteerd met een nier van een levende donor vergeleken met patiënten die deze thuisvoorlichting niet kregen. In 2016 werd er een plan opgesteld om NTAH in andere regio’s in de praktijk te brengen. In de periode 2016-2018 werd intensief samengewerkt met acht deelnemende ziekenhuizen: AMC, OLVG, Erasmus MC, Maasstad Ziekenhuis, Radboud UMC, Jeroen Bosch Ziekenhuis, UMCG en het ZGT. Het project had als doel (1) om de thuisvoorlichting in andere regio’s dan Rotterdam in praktijk te brengen met behoud van kwaliteit en resultaten en (2) om NTAH in de verzekerbare zorg op te nemen. BEVINDINGEN Het project werd volgens plan uitgevoerd in alle acht ziekenhuizen voor wat betreft het contracteren van de ziekenhuizen, het aanstellen van personeel, het trainen van de voorlichters en het organiseren van intervisie- en supervisiebijeenkomsten. Tussen 2016-2018 werden er 768 patiënten bereikt en 303 voorlichtingen gegeven. Zowel patiënten als hun genodigden voor de thuisvoorlichting ontwikkelden een significante stijging in kennis en communicatie betreffende nierinsufficiëntie en de nierfunctievervangende behandelingen. Van de 303 patiënten die een voorlichting hebben gekregen zijn er 6 patiënten overleden, hebben 37 patiënten een postmortale niertransplantatie ondergaan, werd bij 2 patiënten de behandeling gestopt, was van 10 patiënten nog geen follow-up van minimaal zes maanden beschikbaar en wilden 10 patiënten niet meer meedoen aan het project. Van de overige 238 patiënten kozen 104 (44%) voor een levend donatietraject; inmiddels werden 47 patiënten getransplanteerd met een nier van een levende donor. Daarnaast bleek NTAH bijzonder kosteneffectief te zijn. Voorbereidende stappen, zoals een aanvraag bij NZa en het opnemen van NTAH in de kwaliteitseisen, zijn inmiddels gezet voor structurele financiering per 01-01-2021. CONCLUSIES Dit project werd mogelijk gemaakt door Zorgverzekeraars Nederland (ZN). Dit rapport is samen met de begeleidingscommissie tot stand gekomen. De begeleidingscommissie bestaat uit vertegenwoordigers van Zorgverzekeraars Nederland, de Nierstichting, Nierpatiënten Vereniging Nederland, Nederlandse Federatie voor Nefrologie en de hoogleraar Medische Psychologie van het Erasmus MC. In het rapport wordt een uitgebreid overzicht gegeven van de rationale en de behaalde resultaten van NTAH. Deze resultaten zijn in lijn met de resuHet ‘Nierteam aan Huis’ (NTAH) project is in de periode van 2016-2018 uitgevoerd. NTAH is een voorlichtingsprogramma voor patiënten met terminale nierinsufficiëntie en wordt gegeven bij de patiënten thuis. De patiënt en hun sociale netwerk worden voorgelicht over terminale nierinsufficiëntie en de behandelvormen hiervan door daarin getrainde voorlichters. Dit project toonde aan dat deze unieke vorm van voorlichting in verschillende regio’s in Nederland implementeerbaar is met goede resultaten op effectiviteit en kwaliteit. Bovendien bleek uit onze analyse dat NTAH bijzonder kosteneffectief is. Om deze reden bevelen wij aan om de thuisvoorlichting landelijk in te voeren en financieel mogelijk te maken

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

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

Exploring Knowledge About Dialysis, Transplantation, and Living Donation Among Patients and Their Living Kidney Donors

Background: In order to make a well-considered decision and give informed consent about renal replacement therapy, potential living kidney donors and recipients should have sufficient understanding of the options and risks. Purpose: We aimed to explore knowledge about Dialysis & Transplantation (DT) and Living Donation (LD) among prospective living kidney donors and recipients. Methods: Eighty-five donors and 81 recipients completed the Rotterdam Renal Replacement Knowledge-Test (R3K-T) 1 day before surgery. The questionnaire was available in various languages. Results: Recipients knew significantly more about DT than donors (p < 0.001); donors knew more about LD than recipients (p < 0.001). A minority of donors (15 %) and recipients (17 %) had a score that was comparable to the knowledge level of the naïve general population. Recipients and donors knew less about DT and LD if their native language was not Dutch. In addition, recipients knew less about DT if they were undergoing pre-emptive transplantation. Conclusions: We conclude that recipients and donors retain different information. The decision to undergo living donation appears to be not always based on full knowledge of the risks. We recommend that professionals assess knowledge of prospective donors and recipients during the education process using the R3K-T, and extra attention is required for non-native speakers

An ELPAT definition of the concept ‘Psychosocial’ in the context of Screening Living Organ Donors in Europe: A Concept Mapping approach

Introduction: Across Europe, transplant centers vary in the set of psychosocial screening criteria/guidelines used for the selection of eligible living donors. Our aim was to explore whether a common framework underlies this variation in screening criteria and, based on this framework, to develop a consensus on the essential elements of psychosocial screening of living liver and kidney donors. In order to do so, a research question was set out to define a conceptual framework of the concept ‘Psychosocial’ in the context of screening living organ donors in Europe. We formulated the following research question: Which psychosocial screening criteria are most commonly reported and considered as most important or effective in selecting eligible kidney and liver donors? Method: Concept mapping methodology was used to create a visual representation of the complex topic ‘Psychosocial’ in the context of screening living organ donors in Europe, in which underlying concepts, the relative importance of these concepts and the interplay between different concepts are organized. Initial psychosocial screening criteria (N=83) were derived from an extensive systematic literature review on guidelines, protocols and consensus statements on psychosocial screening practices, complemented by group brainstorm sessions. These criteria were then sorted and rated for their importance and effectiveness by 26 project participants. The data were analyzed using the Concept System Core© Software, which provided us with graphical depictions (concept maps) illustrating the view of project participants on these screening criteria. Pattern Matches and Go-Zones showed us the highlycommon, important and effective criteria. Results: The concept map procedure resulted in six clusters of psychosocial screening criteria: (1) Motivation and decision making (2) Personal resources (3) Psychopathology (4) Social resources (5) Ethical and Legal factors (6) Information and risk processing. Bivariate rating of these criteria revealed which important criteria are already frequently used for screening and which require more attention. Based on the cluster map and bivariate ratings we constructed a conceptual framework for non-medical risk factors that need to be considered when screening potential living organ donors. Conclusion: We provided a conceptual framework of psychosocial screening criteria which can serve as a practical recommendation for the psychosocial screening of potential living organ donors

Development of the Rotterdam Renal Replacement Knowledge-Test (R3K-T)

Introduction: There is currently a lack of validated or standardized measures to test the level of knowledge among renal patients regarding kidney disease and available treatment options. We conducted a pilot study to develop a questionnaire measuring knowledge of kidney disease, dialysis and transplantation options. The main aim of this study was to develop such an instrument for further use in research and practice. Method: An initial 61 item pool was generating by searching the literature and consulting experts in this area for additional items. This questionnaire was completed by 182 renal disease patients from 4 dialysis centers in the Rotterdam municipality. A factor analysis was conducted using the maximum likelihood factor method followed by direct oblimin rotation to obtain variance explained by each factor. Questions that loaded ≥ .30 on a factor were included. Results: Twenty-seven patients (24%) were in the pre-RRT phase, 60 (54%) were undergoing haemodialysis, 16 (14%) were undergoing peritoneal dialysis, and 9 (8%) had a graft failure. Forty (36%) were female and 72 (64%) were male. Age range 19-87 (median = 59). A factor analys

Factors influencing access to kidney transplantation: a research protocol of a qualitative study on stakeholders' perspectives

INTRODUCTION: Unequal access to kidney transplantation is suggested, but no systematic inventory exists about factors influencing access to kidney transplantation. There is an absence of any research that has combined stakeholder perspectives along the complete trajectory of transplantation. The present qualitative study explores the contributing factors from the perspectives of multiple stakeholders in this trajectory, including patients, health professionals and health insurance and financial representatives in the Netherlands. Moreover, stakeholders will be invited to suggesting strategies and solutions for handling the facilitating and hindering factors found. By means of interaction, stakeholder groups will arrive at a consensus for new policymaking in the field of a Dutch transplantation care. METHODS AND ANALYSIS: The different stakeholders' perspectives and possible solutions will be explored by interviewing in three phases. In the first phase, stakeholders' group perspectives will be explored with individual interviews and focus group interviews without confrontation of views from other perspectives. In the second phase of focus group interviewing, perspectives will be confronted with the other stakeholders' perspectives assessed. Finally, in the third phase, stakeholders will be invited to focus group discussions for suggesting solutions to overcome barriers and promote facilitators for improving access to transplantation. Approximately, groups from six to twelve participants per focus group and four to maximal six focus groups will be held per stakeholder, depending on the level of saturation, as prescribed by grounded theory. The interviews will be audio-recorded and transcribed verbatim, and qualitative data will be analysed according to the principles of grounded theory supported by using NVivo software. ETHICS AND DISSEMINATION: The Medical Ethical Committee of Erasmus MC, Rotterdam, The Netherlands, has approved this study. The results will be disseminated in peer-reviewed journals and major international conferences

Towards a standardised informed consent procedure for live donor nephrectomy: The PRINCE (Process of Informed Consent Evaluation) project-study protocol for a nationwide prospective cohort study

Introduction: Informed consent is mandatory for all (surgical) procedures, but it is even more important when it comes to living kidney donors undergoing surgery for the benefit of others. Donor education, leading to informed consent, needs to be carried out according to certain standards. Informed consent procedures for live donor nephrectomy vary per centre, and even per individual healthcare professional. The basis for a standardised, uniform surgical informed consent procedure for live donor nephrectomy can be created by assessing what information donors need to hear to prepare them for the operation and convalescence. Methods and analysis: The PRINCE (Process of In formed Consent Evaluation) project is a prospective, multicentre cohort study, to be carried out in all eight Dutch kidney transplant centres. Donor knowledge of the procedure and postoperative course will be evaluated by means of pop quizzes. A baseline cohort (prior to receiving any information from a member of the transplant team in one of the transplant centres) will be compared with a control group, the members of which receive the pop quiz on the day of admission for donor nephrectomy. Donor satisfaction will be evaluated for all donors who completed the admission pop-quiz. The primary end point is donor knowledge. In addition, those elements that have to be included in the standardized format informed consent procedure will be identified. Secondary end points are donor satisfaction, current informed consent practices in the different centres (eg, how many visits, which personnel, what kind of information is di