Asking the right questions: towards a person-centered conception of shared decision-making regarding treatment of advanced chronic kidney disease in older patients.

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease (CKD), involving dialysis or conservative care. Shared decision-making (SDM) is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient's values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient's perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient's relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD.

Survival of patients who opt for dialysis versus conservative care: a systematic review and meta-analysis.

BACKGROUND: Non-dialytic conservative care (CC) has been proposed as a treatment option for patients with kidney failure. This systematic review and meta-analysis aims at comparing survival outcomes between dialysis and CC in studies where patients made an explicit treatment choice. METHODS: Five databases were systematically searched from origin through 25 February 2021 for studies comparing survival outcomes among patients choosing dialysis versus CC. Adjusted and unadjusted survival rates were extracted and meta-analysis performed where applicable. Risk of bias analysis was performed according to the Cochrane Risk Of Bias In Non-randomized Studies of Interventions. RESULTS: A total of 22 cohort studies were included covering 21 344 patients. Most studies were prone to selection bias and confounding. Patients opting for dialysis were generally younger and had fewer comorbid conditions, fewer functional impairments and less frailty than patients who chose CC. The unadjusted median survival from treatment decision or an estimated glomerular filtration rate <15 mL/min/1.73 m2 ranged from 20 and 67 months for dialysis and 6 and 31 months for CC. Meta-analysis of 12 studies that provided adjusted hazard ratios (HRs) for mortality showed a pooled adjusted HR of 0.47 (95% confidence interval 0.39-0.57) for patients choosing dialysis compared with CC. In subgroups of patients with older age or severe comorbidities, the reduction of mortality risk remained statistically significant, although analyses were unadjusted. CONCLUSIONS: Patients opting for dialysis have an overall lower mortality risk compared with patients opting for CC. However, a high risk of bias and heterogeneous reporting preclude definitive conclusions and results cannot be translated to an individual level.

Predicting mortality risk on dialysis and conservative care: development and internal validation of a prediction tool for older patients with advanced chronic kidney disease.

BACKGROUND: Conservative care (CC) may be a valid alternative to dialysis for certain older patients with advanced chronic kidney disease (CKD). A model that predicts patient prognosis on both treatment pathways could be of value in shared decision-making. Therefore, the aim is to develop a prediction tool that predicts the mortality risk for the same patient for both dialysis and CC from the time of treatment decision. METHODS: CKD Stage 4/5 patients aged ≥70 years, treated at a single centre in the Netherlands, were included between 2004 and 2016. Predictors were collected at treatment decision and selected based on literature and an expert panel. Outcome was 2-year mortality. Basic and extended logistic regression models were developed for both the dialysis and CC groups. These models were internally validated with bootstrapping. Model performance was assessed with discrimination and calibration. RESULTS: In total, 366 patients were included, of which 126 chose CC. Pre-selected predictors for the basic model were age, estimated glomerular filtration rate, malignancy and cardiovascular disease. Discrimination was moderate, with optimism-corrected C-statistics ranging from 0.675 to 0.750. Calibration plots showed good calibration. CONCLUSIONS: A prediction tool that predicts 2-year mortality was developed to provide older advanced CKD patients with individualized prognosis estimates for both dialysis and CC. Future studies are needed to test whether our findings hold in other CKD populations. Following external validation, this prediction tool could be used to compare a patient's prognosis on both dialysis and CC, and help to inform treatment decision-making.

Health-related quality of life and symptoms of conservative care versus dialysis in patients with end-stage kidney disease: a systematic review.

BACKGROUND: Non-dialytic conservative care (CC) has been proposed as a viable alternative to maintenance dialysis for selected older patients to treat end-stage kidney disease (ESKD). This systematic review compares both treatment pathways on health-related quality of life (HRQoL) and symptoms, which are major outcomes for patients and clinicians when deciding on preferred treatment. METHODS: We searched PubMed, Embase, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus and PsycINFO from inception to 1 October 2019 for studies comparing patient-reported HRQoL outcomes or symptoms between patients who chose either CC or dialysis for ESKD. RESULTS: Eleven observational cohort studies were identified comprising 1718 patients overall. There were no randomized controlled trials. Studies were susceptible to selection bias and confounding. In most studies, patients who chose CC were older and had more comorbidities and worse functional status than patients who chose dialysis. Results were broadly consistent across studies, despite considerable clinical and methodological heterogeneity. Patient-reported physical health outcomes and symptoms appeared to be worse in patients who chose CC compared with patients who chose dialysis but had not yet started, but similar compared with patients on dialysis. Mental health outcomes were similar between patients who chose CC or dialysis, including before and after dialysis start. In patients who chose dialysis, the burden of kidney disease and impact on daily life increased after dialysis start. CONCLUSIONS: The available data, while heterogeneous, suggest that in selected older patients, CC has the potential to achieve similar HRQoL and symptoms compared with a dialysis pathway. High-quality prospective studies are needed to confirm these provisional findings.

Hospital Utilization and Costs in Older Patients with Advanced Chronic Kidney Disease Choosing Conservative Care or Dialysis: A Retrospective Cohort Study.

BACKGROUND: Nondialytic conservative care has been recognized as a viable alternative to chronic dialysis in older patients with end-stage kidney disease, but little is known about its consequences on hospital utilization and costs. METHODS: We performed a retrospective cohort study to compare outpatient and inpatient hospital utilization, place of death, and hospital costs in patients aged ≥70 years old who chose conservative care (n = 100) or dialysis (n = 162) after shared decision making in a nonacademic teaching hospital between 2008 and 2016. RESULTS: Patients who chose conservative care were older than patients who chose dialysis (82.5 vs. 76.3 years). Comorbidity did not differ between the 2 patient groups. The incidence rates of outpatient visits per year were 7.1 in patients who chose conservative care and 10.7 in patients who chose dialysis (incidence rate ratio 0.67, 95% CI 0.55-0.81). The incidence rates of in-hospital days per year were, respectively, 6.0 and 9.8 (incidence rate ratio 0.50, 95% CI 0.29-0.88). Also in the final month of life, patients on conservative care had less outpatient visits, were less frequently hospitalized, and died less frequently in hospital than the dialysis patient group. The cost rates per year, measured from original treatment decision, were EUR 5,859 in conservative care patients and EUR 28,354 in patients who chose dialysis comprising both the predialysis and dialysis period (cost rate ratio 0.42, 95% CI 0.27-0.65). Patients who chose dialysis had higher costs on dialysis sessions, outpatient care, inpatient care, laboratory tests, and medical imaging. CONCLUSIONS: Patients who decided to forego dialysis and chose conservative care had less outpatient and inpatient hospital utilization than patients who chose dialysis, including less intensive hospital utilization near the end of life. Both overall and nondialysis-related costs were lower in patients on a conservative care pathway.

Reanalysis of the physical and mental health summary scores of dialysis versus conservative care in older patients with advanced chronic kidney disease: a critical appraisal.

OBJECTIVE: Non-dialytic conservative care is argued to be a reasonable treatment alternative for dialysis in selected older patients with advanced chronic kidney disease. We evaluated patient-relevant outcomes including health-related quality of life in a previous study. However, the scoring algorithm we used to calculate the physical and mental component summary scores of the Short Form-36 (SF-36) turned out to differ from comparable studies on this topic. The aim of this critical appraisal was to reanalyze the SF-36 summary scores in our patient cohort (≥ 70 years) using the more widely used scoring algorithm. RESULTS: Patients on conservative care (n = 23) had lower physical and mental component summary scores compared to patients not yet started on dialysis (n = 39), but similar compared to patients on dialysis (n = 34). These findings were similar to our original findings and did not change the conclusions. Several scoring algorithms are used for the SF-36 summary scores. Researchers should be aware of this fact and should use the same scoring algorithm across similar studies in a specific field to increase comparability. Using the more widely used scoring algorithm, the recalculated SF-36 summary scores of our patient cohort can now be compared to other studies.

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.

Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group.

Value-based health care is increasingly promoted as a strategy for improving care quality by benchmarking outcomes that matter to patients relative to the cost of obtaining those outcomes. To support the shift toward value-based health care in chronic kidney disease (CKD), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international working group of health professionals and patient representatives to develop a standardized minimum set of patient-centered outcomes targeted for clinical use. The considered outcomes and patient-reported outcome measures were generated from systematic literature reviews. Feedback was sought from patients and health professionals. Patients with very high-risk CKD (stages G3a/A3 and G3b/A2-G5, including dialysis, kidney transplantation, and conservative care) were selected as the target population. Using an online modified Delphi process, outcomes important to all patients were selected, such as survival and hospitalization, and to treatment-specific subgroups, such as vascular access survival and kidney allograft survival. Patient-reported outcome measures were included to capture domains of health-related quality of life, which were rated as the most important outcomes by patients. Demographic and clinical variables were identified to be used as case-mix adjusters. Use of these consensus recommendations could enable institutions to monitor, compare, and improve the quality of their CKD care.

Value-based evaluation of dialysis versus conservative care in older patients with advanced chronic kidney disease: a cohort study.

BACKGROUND: Conservative care is argued to be a reasonable treatment alternative for dialysis in older patients with advanced chronic kidney disease (CKD). However, comparisons are scarce and generally focus on survival only. Comparative data on more patient-relevant outcomes are needed to truly foster shared decision-making on an individual level, and cost comparison is needed to assess value of care. METHODS: We conducted a retrospective observational single-center cohort study in 366 patients aged ≥70 years with advanced CKD, who chose dialysis (n = 240) or conservative care (n = 126) after careful counselling by a multidisciplinary team in a non-academic teaching hospital in The Netherlands. Using a value-based health care approach (value = outcomes/cost): survival, health-related quality of life-cross-sectionally assessed with the Kidney Disease Quality of Life Short Form™-treatment burden, and treatment costs were evaluated. RESULTS: The overall survival benefit of patients on a dialysis pathway compared with patients on conservative care diminished or lost significance in patients aged ≥80 years or with severe comorbidity. There were no differences between patients managed conservatively and dialysis patients on physical and mental health summary scores (all P > 0.1). Patients on conservative care had 352.7 hospital free days per year versus 282.7 in patients on a dialysis pathway, calculated from treatment decision (adjusted incidence rate ratio: 1.15, 95% confidence interval: 1.09 to 1.21, P <  0.001). Annual treatment costs were lower in patients on conservative care (adjusted cost ratio: 0.43, 95% confidence interval: 0.28 to 0.67, P <  0.001). CONCLUSIONS: In this study, conservative care is shown to be a viable treatment option in older patients with advanced CKD, particularly in the oldest old and those with severe comorbidity. By achieving similar outcomes at lower treatment burden and treatment costs, value was generated for older patients choosing conservative care and society.

Comparative Survival among Older Adults with Advanced Kidney Disease Managed Conservatively Versus with Dialysis.

BACKGROUND AND OBJECTIVES: Outcomes of older patients with ESRD undergoing RRT or conservative management (CM) are uncertain. Adequate survival data, specifically of older patients, are needed for proper counseling. We compared survival of older renal patients choosing either CM or RRT. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A retrospective survival analysis was performed of a single-center cohort in a nonacademic teaching hospital in The Netherlands from 2004 to 2014. Patients with ESRD ages ≥70 years old at the time that they opted for CM or RRT were included. Patients with acute on chronic renal failure needing immediate start of dialysis were excluded. RESULTS: In total, 107 patients chose CM, and 204 chose RRT. Patients choosing CM were older (mean±SD: 83±4.5 versus 76±4.4 years; P<0.001). The Davies comorbidity scores did not differ significantly between both groups. Median survival of those choosing RRT was higher than those choosing CM from time of modality choice (median; 75th to 25th percentiles: 3.1, 1.5-6.9 versus 1.5, 0.7-3.0 years; log-rank test: P<0.001) and all other starting points (P<0.001 in all patients). However, the survival advantage of patients choosing RRT was no longer observed in patients ages ≥80 years old (median; 75th to 25th percentiles: 2.1, 1.5-3.4 versus 1.4, 0.7-3.0 years; log-rank test: P=0.08). The survival advantage was also substantially reduced in patients ages ≥70 years old with Davies comorbidity scores of ≥3, particularly with cardiovascular comorbidity, although the RRT group maintained its survival advantage at the 5% significance level (median; 75th to 25th percentiles: 1.8, 0.7-4.1 versus 1.0, 0.6-1.4 years; log-rank test: P=0.02). CONCLUSIONS: In this single-center observational study, there was no statistically significant survival advantage among patients ages ≥80 years old choosing RRT over CM. Comorbidity was associated with a lower survival advantage. This provides important information for decision making in older patients with ESRD. CM could be a reasonable alternative to RRT in selected patients.

[Applications of 'quantitative sensory testing']. / Toepassingen van sensibiliteitsonderzoek met 'quantitative sensory testing'.

Quantitative sensory testing (QST) consists of several non-invasive, standardised tests aimed at examining different aspects of the entire somatosensory nervous system. Important advantages of QST over existing supplementary tests such as electromyography are the ability to test the function of thin and unmyelinated nerve fibres as well as the subjective sensation of a somatosensory stimulus. QST is validated in diagnosing small fibre neuropathy, diabetic neuropathy chemotherapy-induced peripheral neuropathy and neuropathic pain. In scientific research, QST is useful in the study into pathophysiological mechanisms of diseases and syndromes with sensory symptoms and in the evaluation of the effect of analgesic treatment on the function of the somatosensory nervous system. In the future, QST could be a useful diagnostic and prognostic test in more forms of neuropathy and in other clinical conditions such as chronic unexplained pain syndromes (e.g. fibromyalgia and whiplash-associated disorder.