Practices and perspectives of patients and healthcare professionals on shared decision-making in nephrology.

BACKGROUND: Given the complexity and variety in treatment options for advanced chronic kidney disease (CKD), shared decision-making (SDM) can be a challenge. SDM is needed for making decisions that best suit patients' needs and their medical and living situations. SDM might be experienced differently by different stakeholders. This study aimed to explore clinical practice and perspectives on SDM in nephrology from three angles: observers, patients and healthcare professionals (HCPs). METHODS: An explanatory sequential mixed methods design was used. First, in the quantitative part of the study, outpatient consultations with patients with advanced chronic kidney disease (eGFR < 20 ml/min) were video recorded and SDM was assessed using the OPTION5 instrument. Subsequently, in the qualitative part, patients and HCPs reflected on their own SDM behaviour during individual stimulated recall interviews which were analysed using deductive thematic content analysis. RESULTS: Twenty nine consultations were recorded and observed in seven hospitals. The mean SDM score was 51 (range 25-80), indicating that SDM was applied to a moderate extent. The stimulated recall interviews with patients showed that they rely on the information provision and opinion of HCPs, expect consistency and support, and desire a proactive role. They also expect to be questioned by the HCP about their SDM preferences. HCPs said they were willing to incorporate patients' preferences in SDM, as long as there are no medical contraindications. They also prefer patients to take a prominent role in SDM. HCPs ascribe various roles to themselves in supporting patients' decision-making. CONCLUSIONS: Although SDM was applied by HCPs to a moderate extent, improvement is needed, especially in helping patients get the information they need and in making sure that every patient is involved in SDM. This is even more important given the complex nature of the disease and the relatively high prevalence of limited health literacy among patients with chronic kidney disease.

Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease - a four-phase mixed methods study.

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 < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal. CONCLUSIONS: The DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare.

Older patients' experiences with a shared decision-making process on choosing dialysis or conservative care for advanced chronic kidney disease: a survey study.

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.

Value of patient decision aids for shared decision-making in kidney failure.

BACKGROUND: It is unknown how often Dutch patient decision aids are used during kidney failure treatment modality education and what their impact is on shared decision-making. OBJECTIVES: We determined the use of Three Good Questions, 'Overviews of options', and Dutch Kidney Guide by kidney healthcare professionals. Also, we determined patient-experienced shared decision-making. Finally, we determined whether the experience of shared decision-making among patients changed after a training workshop for healthcare professionals. DESIGN: Quality improvement study. PARTICIPANTS: Healthcare professionals answered questionnaires regarding education/patient decision aids. Patients with estimated glomerular filtration rate <20 mL/min/1.73 m2 completed shared decision-making questionnaires. Data were analysed with one-way analysis of variance and linear regression. RESULTS: Of 117 healthcare professionals, 56% applied shared decision-making by discussing Three Good Questions (28%), 'Overviews of options' (31%-33%) and Kidney Guide (51%). Of 182 patients, 61%-85% was satisfied with their education. Of worst scoring hospitals regarding shared decision-making, only 50% used 'Overviews of options'/Kidney Guide. Of best scoring hospitals 100% used them, needed less conversations (p = 0.05), provided information about all treatment options and more often provided information at home. After the workshop, patients' shared decision-making scores remained unchanged. CONCLUSIONS: The use of specifically developed patient decision aids during kidney failure treatment modality education is limited. Hospitals that did use them had higher shared decision-making scores. However, the degree of shared decision-making experienced by patients remained unchanged after healthcare professionals were trained on shared decision-making and the implementation of patient decision aids.

The use of implicit persuasion in decision-making about treatment for end-stage kidney disease.

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.