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Background: There are various options for managing end-stage kidney disease. Each option impacts the lives of patients differently. When weighing the pros and cons of the different options, patients’ values, needs and preferences should, therefore, be taken into account. However, despite the best intentions, nephrologists may, more or less deliberately, convey a treatment preference and thereby steer the decision-making process. Being aware of such implicit persuasion could help to further optimise shared decision-making (SDM). This study explores verbal acts of implicit persuasion during outpatient consultations scheduled to make a final treatment decision. These consultations mark the end of a multi-consultation, educational process and summarise treatment aspects discussed previously. Methods: Observations of video-recorded outpatient consultations in nephrology ( n = 20) were used to capture different forms of implicit persuasion. To this purpose, a coding scheme was developed. Results: In nearly every consultation nephrologists used some form of implicit persuasion. Frequently observed behaviours included selectively presenting treatment options, benefits and harms, and giving the impression that undergoing or foregoing treatment is unusual. The extent to which nephrologists used these behaviours differed. Conclusion: The use of implicit persuasion while discussing different kidney replacement modalities appears diverse and quite common. Nephrologists should be made aware of these behaviours as implicit persuasion might prevent patients to become knowledgeable in each treatment option, thereby affecting SDM and causing decisional regret. The developed coding scheme for observing implicit persuasion elicits useful and clinically relevant examples which could be used when providing feedback to nephrologists.

Background and Aims Annually, more than 2.000 end-stage renal disease (ESRD) patients in the Netherlands receive education regarding renal replacement therapies (RRT). The choice for RRT has major impact on a patient’s life. Ideally, this choice is made during a process of Shared Decision Making (SDM), since this improves satisfaction of patients and quality of care. Since 2017, three decision aids for SDM are available in the Netherlands: the 3 Good Questions, Option Grids and Dutch Kidney Guide (www.nierwijzer.nl). However, it is unknown whether these decision aids are sufficiently implemented in daily practice. Therefore, we evaluated SDM and developed an SDM workshop to train centres how to implement these decision aids. Method Twelve centres in the Netherlands were randomly selected and invited to participate. In these centres, the degree of SDM experienced by patients, who recently received RRT information, was measured using the SDM-Q-9 and collaboRATE questionnaires. Furthermore, SDM awareness and use of the decision aids by health care professionals was explored. Finally, we provided a 2-hour workshop for professionals with information regarding SDM and the three decision aids. Results In the twelve participating centres (two academic, ten non-academic), 176 patients completed the questionnaires; 73% found the general impression of the received information (very) good, 84% found the total number of consults good, and 86% found the received amount of information good. On a scale from 0 – 100, with a higher score indicating better SDM, the mean SDM-Q-9 score was 75±22 and the collaboRATE score 86±14. Overall, no significant difference between centres in the SDM-Q-9 and collaboRATE scores was found. When centres with the worst SDM-Q-9 score (< 70) were compared to centres with the best score (> 77), a difference was noticed in the use of kidney-specific decision aids, i.e. Option Grids and Dutch Kidney Guide, and the eGFR level at which the information was given. Only 50% of the worst scoring centres used the decision aids compared to 100% of the best scoring centres. The majority of the worst scoring centres started at an eGFR between 20 and 30 ml/min/1.73 m2, while the best scoring centres all started at an eGFR between 15 and 20 ml/min/1.73 m2. In addition, best scoring centres provided information about all treatment modalities, including nocturnal haemodialysis and conservative treatment (100% of the best vs. 50% of the worst scoring centres), and more often provided information at home (67% of the best vs. 25% of the worst scoring centres). A total of 117 health care professionals (27% physicians, 8% physician assistants, 38% nurses, 14% social workers, 13% other) completed the questionnaire; 81% found the general impression of the education process (very) good, 80% found the total number of consults good, and 56% found the amount of provided information good, while 28% found the amount too much. Fifty-six percent of the professionals believed SDM was applied, however only 28% used the 3 Good Questions and 31 – 33% the Option Grids. The Dutch Kidney Guide was used by 51%. Subsequently, ten of the twelve centres participated in the SDM workshop which was appreciated with a 7.5±0.4 on a scale from 0 – 10. Conclusion Although patients and health care professionals are fairly satisfied with the RRT information and degree of SDM, the use of SDM decision aids by health care professionals is limited. An SDM workshop introducing the decision aids was developed to train centres how to implement them. When optimizing SDM for ESRD patients in the Netherlands, attention should be paid to providing information about all treatment options, including nocturnal haemodialysis and conservative treatment, and providing information at home, to patients with an eGFR between 15 and 20 ml/min/1.73 m2. This project was funded by Stichting Kwaliteitsgelden Medisch Specialisten (SKMS) and health insurers CZ, Menzis and Stichting Achmea Gezondheidszorg.

Background Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD. Methods A four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires. Results The literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p

Background Many older patients approaching end-stage kidney disease have to decide whether to go for dialysis or non-dialytic conservative care (CC). Shared decision-making is recommended to align the treatment plan with the patient’s preferences and values. Little is known about older patients’ experiences with shared decision-making on dialysis or CC. Methods We performed a survey study, in collaboration with the Dutch Kidney Patients Association, in 99 patients aged ≥70 years who had chosen dialysis (n = 75) or CC (n = 24) after a shared decision-making process involving an experienced multidisciplinary team. Results Patients stated to be overall satisfied with the shared decision-making process (% with score 6–10 on 11-point Likert scale, dialysis versus CC: 93% vs. 91%, P = 0.06), and treatment decision (87% vs. 91%, P = 0.03). However, patients also reported negative experiences, especially those who had chosen dialysis. Such negative experiences were related to the timing, informing, and level of decision-making being shared. More patients who selected dialysis indicated to have felt forced to make a decision, mostly due to the circumstances, such as their deteriorating health or kidney function, or by their nephrologist (31% vs. 5%, P = 0.01). Also, patients who selected dialysis mentioned a perceived lack of choice as most common reason for choosing dialysis, and 55% considered their own opinion as most important rather than their nephrologists’ or relatives’ opinion compared to 90% of the patients who had chosen CC (P = 0.02). A subset of patients who had chosen dialysis still doubted their treatment decision compared to no patient who had chosen CC (17% vs. 0%, P = 0.03). Conclusions Older patients reported contrasting experiences with shared decision-making on dialysis or CC. Despite high overall satisfaction, the underlying negative experiences illustrate important but modifiable barriers to an optimal shared decision-making process. Electronic supplementary material The online version of this article (10.1186/s12882-019-1423-x) contains supplementary material, which is available to authorized users.

Background: To evaluate the effectiveness and sustainability of self-managed sodium restriction in patients with chronic kidney disease.Study Design: Open randomized controlled trial.Setting & Participants: Patients with moderately decreased kidney function from 4 hospitals in the Netherlands.Intervention: Regular care was compared with regular care plus an intervention comprising education, motivational interviewing, coaching, and self-monitoring of blood pressure (BP) and sodium.Outcomes: Primary outcomes were sodium excretion and BP after the 3-month intervention and at 6-month follow-up. Secondary outcomes were protein excretion, kidney function, antihypertensive medication, self-efficacy, and health-related quality of life (HRQoL).Results: At baseline, mean sodium excretion rate was 163.6 +/- 64.9 (SD) mmol/24 h; mean estimated glomerular filtration rate was 49.7 +/- 25.6 mL/min/1.73 m(2); median protein excretion rate was 0.8 (IQR, 0.4-1.7) g/24 h; and mean 24-hour ambulatory systolic and diastolic BPs were 129 +/- 15 and 76 +/- 9 mm Hg, respectively. Compared to regular care only (n = 71), at 3 months, the intervention group (n = 67) showed reduced sodium excretion rate (mean change, -30.3 [95% CI, -54.7 to -5.9] mmol/24 h), daytime ambulatory diastolic BP (mean change, -3.4 [95% CI, -6.3 to -0.6] mm Hg), diastolic office BP (mean change, -5.2 [95% CI, -8.4 to -2.1] mm Hg), protein excretion (mean change, -0.4 [95% CI, -0.7 to -0.1] g/24h), and improved self-efficacy (mean change, 0.5 [95% CI, 0.1 to 0.9]). At 6 months, differences in sodium excretion rates and ambulatory BPs between the groups were not significant, but differences were detected in systolic and diastolic office BPs (mean changes of -7.3 [95% CI, -12.7 to -1.9] and -3.8 [95% CI, -6.9 to -0.6] mm Hg, respectively), protein excretion (mean changes, -0.3 [95% CI, -0.6 to -0.1] g/24h), and self-efficacy (mean change, 0.5 [95% CI, 0.0 to 0.9]). No differences in kidney function, medication, and HRQoL were observed.Limitations: Nonblinding, relatively low response rate, and missing data.Conclusions: Compared to regular care only, this self-management intervention modestly improved outcomes, although effects on sodium excretion and ambulatory BP diminish over time. (C) 2016 by the National Kidney Foundation, Inc.