Emma Massey

This file shows the results of the Therapist Adherence Measure (TAM) questionnaire. In this questionnaire participants were asked questions on which essential elements of the intervention protocol had been carried out. The number of participants reporting each element is presented alongside percentages. (DOCX 14 kb)

markdownabstractHet ‘Nierteam aan Huis’ (NTAH) project is in de periode van 2016-2018 uitgevoerd. NTAH is een voorlichtingsprogramma voor patienten met terminale nierinsufficientie en wordt gegeven bij de patienten thuis. De patient en hun sociale netwerk worden voorgelicht over terminale nierinsufficientie 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 patienten en hun sociale omgeving en tot een betere communicatie. Ook werden meer pati...

Kidney transplant recipients face many self-management challenges. We aimed to identify profiles of attitudes towards self-management support (SMS) shortly after kidney transplantation. Profiles were generated using Q-methodology: In face-to-face interviews participants rank-ordered opinion statements on aspects of SMS according to agreement. Socio-demographic and medical characteristics were assessed using a questionnaire. By-person factor analysis was used to analyze the rankings and qualitative data was used to support choice of profiles. The resulting factors represent clusters of patients with similar attitudes towards SMS. Forty-three patients (mean age=56; 77% male) participated. Four profiles were identified: (A) transplant-focused and obedient; (B) holistic and collaborative; (C) life-focused and self-determined; and (D) was bipolar. The positive pole (D+) minimalizing and disengaged and the negative pole (D-) coping-focused and needy represent opposing viewpoints within th...

The benefits of live donor kidney transplantation must be balanced against the potential harm to the donor. Well-designed prospective studies are needed to study the long-term consequences of kidney donation. The "LOng-term follow-up after liVE kidney donation" (LOVE) study is a single center longitudinal cohort study on long-term consequences after living kidney donation. We will study individuals who have donated a kidney from 1981 through 2010 in the Erasmus University Medical Center in Rotterdam, The Netherlands. In this time period, 1092 individuals donated a kidney and contact information is available for all individuals. Each participating donor will be matched (1:4) to non-donors derived from the population-based cohort studies of the Rotterdam Study and the Study of Health in Pomerania. Matching will be based on baseline age, gender, BMI, ethnicity, kidney function, blood pressure, pre-existing co-morbidity, smoking, the use of alcohol and highest education degree...

Background. Nonadherence to medication is a common problem after kidney transplantation. The aim of this study was to explore attitudes towards medication, adherence, and the relationship with clinical outcomes.Method. Kidney recipients participated in a Q-methodological study 6 weeks after transplantation. As a measure of medication adherence, respondents completed the Basel Assessment of Adherence to Immunosuppressive Medications Scale (BAASIS©-interview). Moreover, the intrapatient variability in the pharmacokinetics of tacrolimus was calculated, which measures stability of drug intake. Data on graft survival was retrieved from patient records up to 2 years after transplantation.Results. 113 renal transplant recipients (19–75 years old) participated in the study. Results revealed three attitudes towards medication adherence—attitude 1: “confident and accurate,” attitude 2: “concerned and vigilant,” and attitude 3: “appearance oriented and assertive.” We found association of attit...

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

Nonadherence to immunosuppressive medication after kidney transplantation is a behavioral issue and as such it is important to understand the psychological factors that influence this behavior. The aim of this study was to investigate the extent to which goal cognitions, illness perceptions, and treatment beliefs were related to changes in self-reported immunosuppressive medication adherence up to 18 months after transplantation. Interviews were conducted with patients in the outpatient clinic 6 weeks (T1; n = 113), 6 months (T2; n = 106), and 18 months (T3; n = 84) after transplantation. Self-reported adherence was measured using the Basel Assessment of Adherence to Immunosuppressive Medications Scale Interview. Psychological concepts were measured using the Brief Illness Perceptions Questionnaire, Beliefs about Medicines Questionnaire, and questions on the importance of adherence as a personal goal, conflict with other goals, and self-efficacy for goal attainment. Nonadherence sig...

Knowledge is a prerequisite for promoting well-informed decision-making. Nevertheless, there is no validated and standardized test to assess the level of knowledge among renal patients regarding kidney disease and all treatment options. Therefore, the objective of this study was to investigate the psychometric properties of such a questionnaire for use in research and practice. A 30-item list was validated in four groups: (1) 187 patients on dialysis, (2) 82 patients who were undergoing living donor kidney transplantation the following day, (3) the general population of Dutch residents (n = 515) and (4) North American residents (n = 550). The psychometric properties of the questionnaire were examined using multidimensional item response theory (MIRT). Norm references were also calculated. Five items were found to distort ability estimates (Differential item functioning; DIF). MIRT analyses were subsequently carried out for the remaining 25 items. Almost all items showed good discrimination and difficulty parameters based on the fitted model. Two stable dimensions with 21 items were retrieved for which norm references for the Dutch and North American, dialysis and transplantation groups were calculated. This study resulted in a thorough questionnaire, the Rotterdam renal replacement knowledge-test, which enables reliable testing of patient's knowledge on kidney disease and treatment options in clinic and research.

This overview describes the full spectrum of current pre-clinical and clinical kidney-, liver-, heart- and lung transplantation research performed in Erasmus MC - University Medical Centre in Rotterdam, The Netherlands. An update is provided on the development of a large living donor kidney transplantation program and on optimization of kidney allocation, including the implementation of a domino kidney-donation program. Our current research efforts to optimize immunosuppressive regimens and find novel targets for immunosuppressive therapy, our recent studies on prevention of ischemia-reperfusion-induced graft injury, our newest findings on stimulation of tissue regeneration, our novel approaches to prevent rejection and viral infection, and our latest insights in the regulation of allograft rejection, are summarized.

IntroductionLiving donor kidney transplantation (LDKT) is the optimal treatment for most patients with end-stage renal disease (ESRD). However, there are numerous patients who cannot find a living kidney donor. Randomised controlled trials have shown that home-based education for patients with ESRD and their family/friends leads to four times more LDKTs. This educational intervention is currently being implemented in eight hospitals in the Netherlands. Supervision and quality assessment are being employed to maintain the quality of the intervention. In this study, we aim to: (1) conduct a cost-effectiveness analysis of the educational programme and its quality assurance system; (2) investigate the relationship between the quality of the implementation of the intervention and the outcomes knowledge, communication and LDKT activities; and (3) investigate policy implications.Methods and designPatients with ESRD who do not have a living kidney donor are eligible to receive the home-base...

This study investigated self-management challenges and support needs experienced by kidney transplant recipients. After kidney transplantation, recipients are expected to take an active role in self-management. However, evidence suggests that nurses experience difficulties operationalizing self-management support. Greater insight into the recipients' perspective could help to improve the adequacy and efficacy of nurse-led self-management support. A cross-sectional qualitative study. Focus groups and individual interviews were carried out with kidney transplant recipients treated in a Dutch university hospital. Directed content analysis (DCA) was used. Forty-one kidney transplant recipients participated. Challenges after transplantation included becoming an expert patient, adjusting daily life activities, dealing with medical regimen, forming relationships with nurses, dealing with social consequences, dealing with emotions related to transplantation and the donor and improving s...

We have observed a significant inequality in the number of living donor kidney transplantations (LDKT) performed in our center between patients of Dutch versus non-Dutch descent. This difference has also been found in other European countries. This chapter presents a study that aimed to investigate the role that attitudes of patients and individuals from their community towards communication on LDKT may play in this discrepancy. This was done by interviewing patients on their own attitudes and those of individuals within their respective communities. Focus group discussions and in-depth interviews were conducted among 50 end-stage renal disease patients who were on the deceased donor kidney transplantation wait list. Although patients held favorable attitudes towards LDKT they reported a passive deadlock in the communication on this issue with individuals from their social network. This chapter provides insight into aspects related to this passive deadlock. Thoughtful translation of...

The aim of this study was to investigate (a) the extent to which age at first renal replacement therapy, achievement of developmental milestones, satisfaction of psychological needs, and coping were related to subjective well-being and medication adherence among young adult kidney transplant recipients; and (b) the relationship between subjective well-being and immunosuppressive medication adherence. A cross-sectional, interview study was conducted among renal transplant patients aged 20 to 30 years. In addition to sociodemographic and medical characteristics, concepts measured were: subjective well-being (Positive And Negative Affect Schedule; Satisfaction With Life Scale), medication adherence (Basel Assessment of Adherence to Immunosuppressive Medication Scale), dispositional coping (Brief COPE), achievement of developmental milestones (Course of Life Questionnaire), and satisfaction of psychological needs (Basic Psychological Needs Scale). Sixty-two patients participated (66% men; mean age, 26 years). Sixty-five percent were classified as nonadherent in the past month. In contrast, subjective self-rated overall adherence was high. None of the variables measured were related to nonadherence. Higher feelings of competence and autonomy, and timely achievement of social and psychosexual developmental milestones were related to higher subjective well-being. Well-being and adherence did not differ according to age at diagnosis or first renal replacement therapy. Two thirds of participants were classified as nonadherent which conflicts with participants' own high rating of medication adherence. This emphasizes the need for continued adherence support among young adult transplant recipients; however, no targets for interventions were found in this study. Potential targets for interventions aimed at improving well-being include competence and autonomy.

Our aim was to develop and test an educational program to support well-informed decision making among patients and their social network regarding living donor kidney transplantation (LDKT). One hundred sixty-three patients who were unable to find a living donor were randomized to standard care or standard care plus home-based education. In the education condition, patients and members of their social network participated in home-based educational meetings and discussed renal replacement therapy options. Patients and invitees completed pre-post self-report questionnaires measuring knowledge, risk perception, communication, self-efficacy and subjective norm. LDKT activities were observed for 6 months postintervention. Patients in the experimental group showed significantly more improvements in knowledge (p < 0.001) and communication (p = 0.012) compared with the control group. The invitees showed pre-post increases in knowledge (p < 0.001), attitude toward discussing renal repla...

Mental wellbeing is influenced by self-regulation processes. However, little is known on the efficacy of change techniques based on self-regulation to promote mental wellbeing. The aim of this meta-analysis is to identify effective self-regulation techniques (SRTs) in primary and secondary prevention interventions on mental wellbeing in adolescents. Forty interventions were included in the analyses. Techniques were coded into nine categories of SRTs. Meta-analyses were conducted to identify the effectiveness of SRTs, examining three different outcomes: internalising behaviour, externalising behaviour, and self-esteem. Primary interventions had a small-to-medium ([Formula: see text] = 0.16-0.29) on self-esteem and internalising behaviour. Secondary interventions had a medium-to-large short-term effect (average [Formula: see text] = 0.56) on internalising behaviour and self-esteem. In secondary interventions, interventions including asking for social support [Formula: see text] 95% confidence interval, CI = 1.11-1.98) had a great effect on internalising behaviour. Interventions including monitoring and evaluation had a greater effect on self-esteem [Formula: see text] 95% CI = 0.21-0.57). For primary interventions, there was not a single SRT that was associated with a greater intervention effect on internalising behaviour or self-esteem. No effects were found for externalising behaviours. Self-regulation interventions are moderately effective at improving mental wellbeing among adolescents. Secondary interventions promoting 'asking for social support' and promoting 'monitoring and evaluation' were associated with improved outcomes. More research is needed to identify other SRTs or combinations of SRTs that could improve understanding or optimise mental wellbeing interventions.

A minority of living kidney (between 5-25%) donors have poor psychological outcomes after donation. There is mixed evidence on the influence of medical complications on these outcomes. We examined whether medical complications among donors and recipients predicted changes in donors' mental health (psychological symptoms and well-being) between pre-donation and one year post-donation. One-hundred forty-five donors completed questionnaires on mental health pre-donation, and 3 and 12 months post-donation. Number of recipient re-hospitalizations and donor complications (none; minor; or severe) were obtained from medical records at 3 and 12 months after surgery. Multilevel regression analyses were used to examine the association between medical complications and changes in donors' mental health over time after controlling for socio-demographic characteristics. We found that donor complications (p=0.003) and recipient re-hospitalizations (p=0.001) predicted an increase in donors' psychological symptoms over time. Recipient re-hospitalizations also predicted a decrease in well-being (p=0.005) over time, however this relationship became weaker over time. We conclude that medical complications experienced by either the donor or recipient is a risk factor for deterioration in donors' mental health after living kidney donation. Professionals should monitor donors who experience medical complications, and offer additional psychological support when needed. This article is protected by copyright. All rights reserved.

Living donor kidney transplantation offers advantages to the patient, however involves risks to the donor. To optimize donors' mental health after donation, we studied the influence of psychological factors on this outcome. Potential predictors were based on models of Lazarus () and Ursin and Eriksen () that describe predictors of mental health mediated by stress. Prospective design. Living kidney donors (n = 151) were interviewed before donation and completed questionnaires 2.5 months before and 3 and 12 months post-donation. Using multilevel regression models, we examined whether appraisals, expectations, knowledge, social support, coping, life events, and sociodemographic characteristics predicted psychological symptoms and well-being and whether these relationships were mediated by stress. A greater increase in psychological symptoms over time was found among donors without a partner. Younger age, lack of social support, expectations of interpersonal benefit, lower appraisals of manageability, and an avoidant coping style were related to more psychological symptoms at all time points. The latter three were mediated by stress. No religious affiliation, unemployment, history of psychological problems, less social support, expectations of negative health consequences, and less positive appraisals were related to lower well-being at all time points. This study identified indicators of a lower mental health status among living kidney donors. Professionals should examine this profile before donation and the need for extra psychological support in relation to the number and magnitude of the identified indicators. Interventions should be focused on the changeable factors (e.g., expectations), decreasing stress/psychological symptoms, and/or increasing well-being. Statement of contribution What is already known on this subject? Until now, research on psychological outcomes after living kidney donation revealed that mental health remained the same for the majority of living kidney donors, while mental health improved or deteriorated for a minority after donation. In reaction to these findings, many psychosocial screening guidelines have been developed for potential donors; however, the components of these guidelines are based on professional opinions and experience rather than on longitudinal empirical data. There is a lack of research that identifies pre-donation donor characteristics that are related to a lower mental health among donors. Such studies are essential in order to tailor psychosocial support during the donation process. What does this study add? Components that are mostly included in psychosocial screening guidelines for potential living kidney donors are not predictive of deterioration, nor increase, in mental health after donation, except for the lack of a partner. Therefore, there is little evidence on the necessity of rejecting potential donors based on these psychological criteria. The following psychological risk factors are predictive of the absolute level of donors' mental health during the donation process: A history of psychological problems, expectations of interpersonal benefit and negative health outcomes, an avoidant coping style, lack of social support, appraisals of the donation process as an unmanageable and/or negative event, a younger age, no religious affiliation, and unemployment. We argue that potential donors should not be rejected for donation based on these factors, but the indicators should be used to identify donors who might be in need for more psychological support.