Shared decision-making for kidney replacement therapy: a comprehensive review and a proposed model
Article information
Abstract
Shared decision-making (SDM) enables patients to actively engage in healthcare decisions by ensuring that treatment options align with their values and preferences. The use of SDM is increasingly recognized in the context of selecting kidney replacement therapy (KRT) for patients with chronic kidney disease (CKD). This study reviews the general concept of SDM and global clinical studies on its application in selecting KRT options. Studies have demonstrated the significant benefits of SDM in KRT, including enhanced patient knowledge, satisfaction, autonomy, and increased peritoneal dialysis (PD) selection rates, which may contribute to cost savings. However, challenges remain in implementing SDM owing to time constraints, its dynamic nature, and insufficient incentives. Building on established frameworks, particularly Clayman’s six-step model, we propose a new six-step SDM framework tailored to KRT to facilitate its implementation and promote adoption. Further research is required to validate the long-term impacts of SDM, address the heterogeneity of existing interventions, and identify the most effective models for clinical use.
INTRODUCTION
The prevalence of end-stage kidney disease (ESKD) requiring kidney replacement therapy (KRT) is increasing globally, with Korea experiencing the highest growth [1,2]. From 2010 to 2019, the number of patients with ESKD in Korea nearly doubled [3]. KRT imposes substantial socioeconomic costs, including healthcare expenditures, patient time costs, unemployment, and psychological and physical stress [4–10]. Compared with hemodialysis (HD), peritoneal dialysis (PD) offers the advantage of lower associated costs [2,11–13]. Despite the comparable survival rates between PD and HD [14,15] and the advantages of PD, the proportion of patients receiving PD has declined in many countries, including Korea [2,3,16,17].
The unexpectedly low PD utilization rate can be attributed to various factors, such as reimbursement policies, healthcare infrastructure, and lack of patient education [18,19]. Although social factors are difficult to change, patient education can be improved through the efforts of healthcare professionals. A lack of patient education means that patients are not well-informed about KRT options. Information asymmetry, in which healthcare professionals primarily hold medical knowledge, has long been a challenge that necessitates resolution [20]. Because the medical and socioeconomic implications of each KRT option are highly complex, patients with chronic kidney disease (CKD) often struggle to select the most appropriate treatment modality. Indeed, many patients with CKD who begin dialysis report that they have not received sufficient information to make informed choices [21,22]. Several studies have shown that when patients are provided with more comprehensive information, the proportion of patients choosing home dialysis or PD increases [23–25]. This suggests that many patients undergoing dialysis may benefit from alternative treatment options [26,27].
Shared decision-making (SDM) is the approach that can facilitate improved decision-making. SDM involves both the physician and the patient in the decision-making process, ensuring that choices are made in alignment with the patient’s values and preferences. By sharing sufficient information, SDM empowers patients to participate in the decision-making process [28,29]. Numerous previous and ongoing studies evaluated the effects of SDM implementation in clinical practice [30,31]. The importance of SDM in nephrology was highlighted in the Renal Physicians Association and the American Society of Nephrology (RPA/ASN) guidelines published in 2000 [32], and this stance remains relevant. Some randomized controlled trials (RCTs) and qualitative studies have reported the implementation of SDM in KRT. However, a widely accepted model for implementing SDM in KRT is lacking. This study introduces the concept of SDM, reviews studies on SDM for KRT in major countries and Korea, and presents a clinically implementable SDM model for KRT.
WHAT IS SDM
Concept of SDM
The SDM is a key decision-making model in medical practice. SDM has been defined as an approach in which clinicians and patients share the best available evidence when making healthcare decisions, and patients are supported in considering options and achieving informed preferences [29]. Other classic decision-making models include the paternalistic and informed models. In the paternalistic model, the physician plays a dominant role in decision-making, leaving patients with little to no autonomy. By contrast, the informed decision-making model places decision-making entirely in the hands of the patient as long as appropriate information is provided [33]. SDM lies between these models but is distinct from both [28,33]. SDM is a collaborative process in which healthcare professionals and patients participate in decision-making and share information. Healthcare professionals assist patients in making decisions rather than assuming an authoritative role or remaining passive, as in other decision-making models.
The rise of the concept of informed consent and increasing recognition of patients’ rights to participate in treatment choices have given SDM ethical validity, further emphasizing its importance [28]. SDM aligns with the 4P principles of medicine (personalized, preventive, predictive, and participatory), which is another reason why it has received increasing attention. SDM promotes personalized and participatory decision-making. By helping patients gain a better understanding of their clinical situation, they can predict future outcomes, resulting in better outcomes.
The core elements of SDM have been established over time. Charles et al. [28] defined four core elements of SDM in 1997. Makoul and Clayman [34] defined nine essential elements of SDM. Until recently, SDM models have shared some of these core components; however, they remain heterogeneous [35].
Frameworks for SDM implementation
However, the concept of SDM alone may not provide clear guidance for its implementation in clinical practice. The three-talk model suggested by Elwyn et al. [29] makes the clinical application of the SDM more tangible. The three key steps of the SDM are choice, option, and decision talk. Choice talk ensures that patients are informed of reasonable options available to them. Option talk provides a more comprehensive explanation of these alternatives, whereas decision talk supports patients in reflecting on their preferences and selecting the most appropriate course of action [29]. Choice talk was later revised to team talk to emphasize working together and setting patient goals [36]. Deliberation is necessary throughout this process. This process involves considering the advantages and disadvantages of options, assessing their implications, and considering possible future outcomes [29]. This three-talk model has been adopted and utilized in clinical practice. Recently, Makoul and Clayman [34] proposed a six-step model. This model is a practical version of the essential elements proposed by Makoul and Clayman. The researchers aimed to harmonize the theory, measurements, interventions, and implementation of SDM [37].
Decision-support interventions are valuable tools for implementing SDM. They explain available options, provide information on each choice and its possible outcomes, and ultimately assist in considering personal preferences when making decisions [38]. Patient decision aids (PDAs), educational programs, and prognostic tools are examples of such interventions. The medium could be varied. These can be provided as booklets, interactive websites, applications, or videos [29,39]. A Cochrane review of “decision aids for people facing health treatment or screening decisions” found that PDAs increased the consistency between informed values and treatment choices, improved patient knowledge, and decreased decisional conflict [40].
SDM FOR KRT
Critical role of SDM in selecting KRT options
SDM in advanced kidney disease is gaining increasing attention [41–43]. CKD patients face critical decisions such as “Do I need dialysis?” “What dialysis modality should I use?” “Am I eligible for a living donor transplant?” Making critical decisions is an overwhelming task. Each choice carries risks, and once the decision is made, it will influence the patient’s treatment plan, quality of life, and long-term health outcomes. The amount and complexity of the information on the advantages and disadvantages of each option can be overwhelming [44]. In this decision-making process, complex information regarding each option must be communicated within an appropriate timeframe to ensure that patients fully understand the potential outcomes. SDM is particularly well-suited for managing these complex decisions because it allows patients to actively engage in understanding their options and making choices in alignment with their values. Clinical studies have indicated that patients who participate in SDM for KRT better understand their condition and perceive the decision as their own [45–47]. These patients also demonstrated improved clinical outcomes, including fewer instances of urgent dialysis [48] and lower hospitalization rates [25].
Guidelines for SDM in KRT
The RPA/ASN published the Clinical Practice Guidelines on “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis” in 2000, highlighting SDM as an essential approach in nephrology. The key components of the SDM are outlined in the recommendations. According to these guidelines, the SDM process should involve at least physicians and patients; however, family members, friends, or other members of the renal care team may also be included if necessary. Physicians should provide patients with comprehensive information about the available options, including dialysis modality, conservative care, and time-limited trials. These guidelines emphasize the importance of discussing prognoses, including life expectancy and quality of life, which should be documented and dated. The guidelines indicate that this discussion should be conducted as early as possible in the course of a patient’s renal disease. The guidelines also suggest resolving conflicts by carefully considering the patients’ values [32].
SDM in selecting dialysis modality can be supported by PDAs [36]. The NICE guidelines on SDM recommend using PDAs, if available. PDAs should be evidence-based, and healthcare professionals are encouraged to be well acquainted with them [49]. A review article on interventions supporting SDM for treatment modality decisions in advanced kidney disease identified 24 PDAs designed to assist patients in choosing between KRT options. Most PDAs include content related to the patient’s values and preferences. Ten PDAs were evaluated for their effects and implemented in clinical practice. The results showed positive effects on patient knowledge, decision quality, and activation [39]. The YoDDA booklet is a PDA that was developed in the UK. A prospective nonrandomized study involving 274 patients found that those who received YoDDA booklets had higher scores for understanding kidney disease and treatment options [50]. ‘My Kidney, My Choice’ is a PDA developed in Australia. A post-education survey of 97 patients revealed that their knowledge levels increased after using decision aids [51]. In a RCT in the US, patients who used decision aids experienced less decisional conflict [52].
Global clinical studies on SDM for KRT
Many countries are developing interventions to select KRT options based on prior research and are evaluating their effectiveness and utility. Some major countries are leading this trend, and more are joining this movement. The key studies are shown in Table 1. The study designs ranged from qualitative to clinical trials. However, the outcomes of these studies varied. Some studies have used subjective measures, such as patient satisfaction or quality of life, while others have utilized scoring tools, such as the SDM-Q-9. SDM-Q-9 is a set of nine questions designed to measure the quality of SDM, with responses converted into scores [53,54]. Additionally, some studies have focused on clinical outcomes such as the ratio of PD to HD, hospitalization rates, and survival rates. This variety makes it challenging to accurately assess the effectiveness of SDM.
In Denmark, a decision-making intervention, Shared Decision-Making and Dialysis Choice (SDM-DC), was developed for choosing a dialysis modality in 2015. SDM-DC is a structured model that can be consistently implemented in patients with CKD. This intervention was based on Elwyn’s three-talk model. Patients and the dialysis coordinator held three meetings, each corresponding to choice-, option-, and decision-talk. The intervention included a PDA called ‘Dialysis Choice,’ four videos featuring different patients, and a folder with photos and drawings. This intervention was pilot-tested [55] and implemented in 349 patients in real clinical practice. Of these, 29 participated in the follow-up interviews. The patients reported that the decision felt like their own, and that the meetings and PDA contributed significantly to their decision-making processes [45]. A total of 149 patients completed the SDM-Q-9 to measure decision quality. The scores were not significantly different between the home- and hospital-based dialysis groups. However, knowledge and readiness scores were higher in home-based than in hospital-based dialysis patients [46]. Six months after starting dialysis, follow-up interviews were conducted with 13 patients. Those receiving home-based treatment became more involved in their treatment and were able to manage their own healthcare when problems arose [56]. The higher self-management ability observed in the home-based intervention group can be considered an effect of SDM. As home-based modalities require strong self-management skills, they can only be sustained through adequate information and education. Without sufficient information and SDM, patients may regress to hospital-based treatments. Conversely, even when patients have sufficient self-management capacity, their choices may be limited if their physician lacks understanding of the patient or fails to provide adequate information. Therefore, improved patient autonomy in the home-based group, achieved through a better understanding of patients and comprehensive education, can be considered a positive outcome of SDM.
In Germany, SDM-Q-9 scores and treatment satisfaction (TS) were measured in HD and PD patients [57]. In total, 482 patients were identified after matching the two groups using propensity scores. SDM and TS scores were higher in the PD group than in the HD group [58]. In multivariate analysis, SDM scores were significant predictors of higher TS scores in both the PD and HD groups. Other predictors include psychological state, suggesting that incorporating psychological screening into nephrological counseling could enhance decision-making and TS [59]. Another study conducted in Germany compared the SDM-Q-9 scores between 590 HD patients who perceived that they were informed about other dialysis options (PD) and those who were not. According to the logistic regression model, patients older than 65 years and those with lower levels of education had a lower chance of being informed. The informed group had a higher SDM-Q-9 score [60].
A similar study was conducted in Iran, in which demographic factors and SDM-Q-9 data were collected from 300 patients undergoing dialysis. The mean SDM-Q-9 score of the PD patients was higher than that of the HD patients. The SDM-Q-9 scores vary according to patient age, educational level, and income [61]. These results suggest that specific patient groups, such as younger, more educated, and higher-income individuals, are more likely to engage more effectively in the decision-making process. This highlights the need for developing SDM-based patient education programs tailored to individual needs. If HD patients had been provided with a more attentive SDM process, they might have been more inclined to choose PD. This highlights the need for an SDM that can be effectively applied to older and less-educated populations.
A study conducted in Taiwan highlighted the role of SDM in facilitating non-HD options. This study compared the proportions of PD and living donor kidney transplants before and after implementing SDM for KRT. In total, 298 patients who did not receive SDM for KRT and 310 who received SDM for KRT were included in the study. Of the 310 patients, 220 completed the SDM process. After completing SDM, the number of patients receiving PD, those evaluated for living donor KT, and those ultimately receiving living donor KT increased [62]. This finding underscores the pivotal role of SDM in promoting non-HD options.
In Japan, a study group implemented a one-hour SDM session to help patients understand their treatment options. This session covered the patient’s current kidney condition, potential symptoms of renal dysfunction, and benefits and drawbacks of each dialysis modality. Of the 620 dialysis patients, 128 participated in the SDM discussions. A retrospective study using propensity score matching revealed that patients who engaged in SDM had fewer urgent hospitalizations and were more likely to select PD over other options than those who did not undergo SDM [24]. A recent study by the same group compared survival rates of patients with and without SDM. Of the 554 patients included, 123 were in the SDM group, with a mean observation period of 71.3 months. The survival rate was significantly higher in the SDM group. Multivariate analysis revealed that SDM was significantly associated with lower mortality [63]. Although some studies have shown better short-term mortality outcomes following SDM interventions [64,65], there are few long-term follow-up studies. These findings highlight the significance of this study.
In Spain, a prospective multicenter study was conducted across 26 centers involving 1,044 patients. This study implemented an educational process consisting of four phases and included multiformat PDAs. Patients who participated in the educational process were significantly more likely to choose PD (50% vs. 7.5%) and demonstrated a higher concordance between their chosen modality and definitive treatment. Patients with SDM also experienced fewer instances of unplanned dialysis [48]. This study demonstrates positive clinical outcomes in a large cohort.
Several RCTs have been conducted to establish a stronger evidence base for the effectiveness of SDM in the KRT. In Australia, a pragmatic RCT evaluated a decision support intervention called OPTIONS in 37 patients aged ≥ 70 years. The intervention consisted of a workbook, audio recording, and worksheet. Follow-up consultations occurred one month later, and if no decision was made, three months later. Patients in the intervention group reported fewer decision conflicts and regret than those in the control group. However, no differences were observed in the health-related quality of life scores for physical or mental health [47].
PREPARE NOW, a cluster RCT conducted in the US, included 1,473 patients with a four-year follow-up. The Patient-Centered Kidney Transitions Care Intervention is a multicomponent program involving a kidney transition specialist team and informatics tools for providers. The primary outcomes included patient-reported confidence in managing kidney disease, choice of kidney failure treatment, and number of hospitalizations [66]. No significant differences were observed between the intervention and control groups. Researchers have attributed this to the limited uptake of the intervention by patients and the broad study population, which resulted in a small number of patients progressing to kidney failure [67]. This study highlights the difficulty in achieving clear and definitive outcomes in SDM research. Another ongoing RCT in the US, DIAL-SDM, will pilot test the intervention in 60 patients. This study measured the feasibility, acceptability, and fidelity of the intervention, which included communication intervention for nephrologists and coaching for patients [68].
In Korea, an RCT involving 1194 patients, SDM for Choosing RenAL Replacement Therapy in CKD Patients, is currently in progress. Patients were recruited from 19 tertiary hospitals and randomized into three groups in a 1:1:1 ratio: conventional, extensive informed decision-making (EIDM), and SDM groups. The SDM group received education using leaflets, self-assessment items [69], and a self-developed counseling calendar. The EIDM group was educated with leaflets and intensive learning materials (mostly videos), whereas the conventional group was educated only with leaflets (Fig. 1). The primary outcomes were the proportions of HD and non-HD options (PD and kidney transplantation). The SDM-Q-9 score was used to assess the additional outcomes [70]. This study is the first RCT on SDM for KRT involving a large population from multiple centers in Korea. The results of this study are expected to help identify the most suitable SDM approach for the KRT.
SIX-STEP SDM MODEL FOR KRT
We propose a six-step SDM model for KRT. The initial version of this model was used in the SDM-ART trial in Korea, and the present version was a refined iteration. This model is based on the German six-step SDM model by Clayman et al. [37], which itself was built upon earlier frameworks, including the integrative SDM model by Makoul and Clayman that presented nine essential elements of SDM. This model aligns with the three-step model by Elwyn et al. [29,36]. These six steps aimed to clarify the objectives of the three-step model while incorporating the core SDM elements. The nine essential elements of the SDM incorporated in our six-step model are shown in Figure 2. Studies have proposed models based on the three-talk model [55,71] or a nephrologist’s checklist for SDM [72]; however, this is the first six-step model specifically focused on the KRT. We also provided sample questions for each step that could be implemented in clinical settings (Table 2). Additionally, we demonstrate how the SDM process can be applied to realistic case-based scenarios (Table 3). This model streamlines the SDM process and enhances healthcare-provider accessibility.
Nine essential elements incorporated in the six-step model. SDM, shared decision-making; KRT, kidney replacement therapy.
Step 1. Define the goal: choosing the best KRT option together
Example: We are currently discussing and determining the most suitable type of KRT.
This step informs CKD patients that they are facing an important treatment decision and that SDM will guide the process. The goal should be clearly communicated to the patients. If a patient’s current medical condition has not been explained, it is essential to inform them about their current kidney function and the need to prepare for KRT. It would be helpful to explain SDM and SDM processes.
Step 2. Explain the need for participation
Example: We will discuss available KRT options. I will guide you, but the final decision will be yours.
As emphasized by Elwyn et al. [36] in the ‘Team Talk’ step, collaboration is important. It is essential to involve patients actively in the decision-making process by empowering them and fostering a sense of responsibility. This helps patients understand that the decision ultimately lies in their hands and that they should consider their preferences and values. It is also important to emphasize the significance of preparing for the KRT by explaining the potential consequences of not taking timely action. Providing this context can help patients appreciate the importance of active participation.
Step 3. Provide comprehensive information about KRT options (HD, PD, transplantation, and conservative care)
Example: The available choices are hemodialysis, peritoneal dialysis, transplantation, and conservative care. I will explain the advantages, disadvantages, and implications of each option.
Healthcare providers should offer sufficient information about each KRT option, including the potential outcomes, associated costs, and other relevant implications. Decision support interventions are particularly useful at this stage. These include leaflets, videos, PDAs, or structured educational programs. Regardless of the format, it is essential to ensure that information is unbiased. If certain options, such as PD or transplantation, are unavailable at the patient’s current center, this information must be disclosed. In such cases, patients have the right to know about alternatives, including transfer to another center [73]. Tailored communication that considers factors such as the patient’s age, education level, and cultural background may be necessary to enhance understanding and ensure informed decision-making [74,75].
Step 4. Gather information about the patient’s situation and values: treatment awareness, preferences, lifestyle, family support, etc
Example: What are your life priorities? Do you have a job? Would you prefer treatment options that require fewer hospital visits? Is there anyone at home who can assist you?
Healthcare providers should identify patient values, preferences, and overall situations to facilitate effective SDM. Some patients may have inaccurate or negative perceptions about certain KRT options. Physicians must recognize and address these misperceptions to ensure informed and balanced discussions. Additionally, some patients may not fully understand or recognize their preferences. In such cases, engaging in thoughtful discussions can help clarify values and priorities.
Factors such as lifestyle, familial support, and daily routines can play critical roles in selecting the most appropriate KRT option. Tools such as PDAs can aid this process. For instance, in Korea, a self-assessment tool is available to evaluate patient values across three domains: health, lifestyle, and dialysis environment [69]. By understanding this information, healthcare providers can better guide patients toward making decisions that align with their individual circumstances and values.
Discussions must be tailored to the patient information gathered. For example, as shown in the previously mentioned studies, older adults tend to score lower on SDM [60,61]. While this might suggest that elderly patients are less willing to participate in decision-making, many older individuals are increasingly eager to be actively involved [76]. Because a significant proportion of patients undergoing dialysis are older adults [77], it is important to provide education tailored to their needs. Digital learning materials may be helpful for both elderly and younger patients, and repeated education is often necessary. In cases where cognitive function or understanding is limited, the involvement of family members in the decision-making process can be beneficial. In Korea, due to the economic burden faced by many elderly patients, it is essential to present “doing nothing” as a viable treatment option.
Step 5. Make a decision and ensure it aligns with the patient’s values
Example: Are you prepared to make a decision? If not, what uncertainties or concerns did you encounter? Yes, based on your comments, I agree that HD/PD is the best option.
In this step, the patient either decides or postpones their decision. Some patients may require additional time or information to feel confident while making choices. Healthcare providers must assess whether patients are ready and able to make decisions [72]. Healthcare providers must identify the specific concerns or hesitations of the patients and provide the necessary information to address these concerns. Additionally, when a patient makes a decision, healthcare providers should ensure that the choice aligns with the patient’s values and is the best option for their individual circumstances.
When a final decision is made, it is essential for the patient to express their choice verbally. This ensures that the decision is not paternalistic and reinforces the patient’s ownership of the decision.
Step 6. Confirm the shared decision and prepare for the selected KRT option
Example: We made a shared decision on which we agree. We are currently preparing for HD/PD/transplantation.
This step confirms the shared decision and initiates implementation. Practical preparations included scheduling vascular access for dialysis, initiating tests for transplantation, and arranging other necessary steps for the selected KRT modality.
CHALLENGES IN IMPLEMENTING AND RESEARCHING SDM
Barriers to SDM implementation
Time pressure on patients and clinicians
Time constraints are recognized as significant barriers to effective SDM. Patients often report that the limited time allocated to consultations is insufficient for processing information, reflecting on their options, and addressing their concerns or questions with a clinician. Interviews revealed that some patients felt reluctant to prolong appointments when clinicians appeared busy or when there were long waiting times, resulting in earlier termination of consultations [78,79].
For clinicians, time pressure often leads to a reliance on default treatment options that are quick to implement and familiar, owing to repetition. This phenomenon has been cited as a contributing factor to the disproportionate prevalence of HD over PD in Germany, where PD accounts for only 6% of KRT cases [80].
The absence of reimbursement for clinicians dedicated to SDM is another obstacle. Healthcare systems that do not compensate for this additional effort make it difficult for clinicians to allocate time for SDM amid competing demands [81].
These systemic barriers highlight the need for structural changes, such as incentivizing SDM participation through appropriate compensation and support for clinicians’ time investment. In addition as clinicians become more experienced through the repeated implementation of SDM, the process is likely to become more efficient, thereby alleviating time pressure. Providing patients with decision aids such as brochures or videos before or after consultation enables continuous learning outside clinical encounters [70]. Several prior studies have also highlighted a collaborative team-based approach in which non-physician healthcare professionals, such as advanced practice nurses and care coordinators, provide pre-consultation explanations and counseling regarding the SDM process [82,83]. By initiating patient education and preference exploration early and staying attentive to their satisfaction and opportunities for reconsideration, this collaborative system is considered a promising strategy to further alleviate the time burden [84,85]. Moreover, for patients who tend to rely heavily on physicians, hesitate to question them, or feel burdened by their preoccupied schedules, team discussions may become predominantly physician-driven; in such cases, the involvement of non-physician professionals can help enhance patient participation. These approaches suggest that although substantial, time constraints are not insurmountable barriers to effective SDM implementation.
Healthcare system and limitations in modalities
In SDM, not all possible treatment options are presented equally. A major factor shaping clinician preferences is the healthcare system’s ability to support certain treatment modalities. Constraints such as resource availability, institutional policies, and staffing limitations often dictate which options can be pursued [79].
For KRT, commonly considered modalities, such as renal transplantation, HD, and PD, are implemented at varying rates. In Korea, HD is the primary modality for ESKD, accounting for 83.6% of cases in 2021, whereas PD usage drastically declined from 28% in 2006 to 4.4% in 2021. In 2019, among 941 dialysis facilities, only 13% (n = 119) offered PD; even within these facilities, PD accounted for only 6–13% of dialysis patients. Facilities treating 20 or more PD patients constituted only 8.6% (n = 81) [86]. A retrospective study analyzing dialysis patients in Korea from 2002 to 2013 further reinforced this trend, showing that 98% of PD patients were treated at tertiary hospitals, whereas HD was more widely available, with 51% of patients receiving treatment in primary clinics and 37% in tertiary hospitals [87]. In addition to the limited availability of facilities, several factors have been identified as contributing to the low prevalence of PD, including the lack of a dedicated infrastructure for managing peritonitis and other PD-related complications, lower reimbursement rates for physicians compared to facility-based HD, insufficient PD training among nephrologists, increasing age of the ESRD population (elderly diabetic patients have demonstrated poorer PD outcomes in previous studies) [86,88], and a shortage of nurses trained to manage PD patients. In Korea, the fee-for-service reimbursement model allocates higher compensation to HD because of frequent hospital visits, creating a financial incentive for both healthcare providers and institutions. A notable example is the significant increase in PD utilization in the United States following adjustments to PD reimbursement policies [89]. Similarly, kidney transplantation, which is considered the ideal solution, remains limited due to a persistent shortage of donors [80,90].
When a particular modality is rarely practiced or offered, proposing it as a viable option becomes challenging. Moreover, clinicians may avoid strongly advocating certain modalities because of the previously mentioned imbalance in healthcare infrastructure and their own uncertainty stemming from a lack of education or practical experience [80]. This preference can influence patients’ decision-making. Interviews with clinicians highlight that their preferences, whether deliberate or subconscious, often shape treatment decisions [91] through strategic techniques such as the order of options presented or specific word choices—a phenomenon referred to as “strategic maneuvering [92].” Such biases in decision-making have been observed in dialysis therapy, where the clinician’s favored modality tends to steer discussions, making patients feel influenced to align themselves with their physician’s recommendations [93]. Given that facility and resource limitations can hinder the implementation of SDM, achieving successful SDM requires effective communication during decision-making consultations and a coordinated approach that ensures a seamless transition to the initiation and implementation of the chosen treatment modality. Furthermore, systematic training and unbiased discussions are essential to ensure that all treatment options are considered equally in the SDM. van Dulmen et al. [94] examined various forms of implicit persuasion and strategic maneuvering frequently observed in nephrology practice. These include using age as an explicit determining factor to exclude certain treatment options, referencing the ‘usual’ or majority choice of past patients to imply that certain options are uncommon, and making assertions about a patient’s personality or preferences. To systematically assess and quantify the extent of implicit persuasion in KRT consultations, they proposed an 18-behavior coding scheme. Remaining vigilant of these biases and implementing standardized SDM models, checklists, and decision aids can help minimize clinician influence and ensure uniform consultation across providers. Furthermore, regular training sessions and workshops for counselors are essential for standardizing the SDM process, necessitating support at the organizational or national level for effective implementation.
Dynamic nature of SDM
Decision aids have continuously evolved as clinicians strive to remain current with the latest medical evidence and guidelines [81]. Additionally, feedback from patients and changing societal norms contributed to adjustments in educational content over time, such as the development of new SDM for ESKD [84]. Consequently, the approaches of the same clinician may vary over time, reflecting these updates. The direction of SDM in kidney care has shifted across different eras, demonstrating a lack of uniformity in practice and recommendations [95]. Given these variations in SDM, it is essential to periodically update educational materials, localize them in the healthcare environment and cultural context of each country, and ensure standardization and currency through regular training programs and certification processes.
Challenges in SDM research
Although research on SDM has gained prominence as a valuable approach in healthcare, it remains associated with several unavoidable challenges.
Influence of external variables
The processes of SDM research are shaped by various medical and environmental factors, including the individuals involved, timing of decisions, and clinical setting. These variables often necessitate tailored and personalized educational approaches, making standardized implementation difficult and complicating efforts to control for confounding factors. This ultimately challenges the accurate assessment of the intervention effectiveness.
Patient variability was a major contributor to this complexity. Differences in language proficiency, health literacy, numeracy, and cultural familiarity with autonomous decision-making often act as barriers to SDM [29]. Ethnicity also influences the type and amount of information received during decision-making [96]. Patients facing high-stress decisions such as choosing a dialysis modality often experience cognitive and emotional overload, which can impede their ability to actively engage in SDM [52,97,98].
Clinical variability plays a significant role in this process. Effective implementation requires thorough training of healthcare providers; however, disparities in training quality can result in inconsistent delivery of interventions [99]. Moreover, physician bias and information framing may inadvertently limit the range of options presented to patients, compromising the impartiality and comprehensiveness of the SDM process [100,101].
Time-intensive implementation
SDM research requires a substantial amount of time, from the recruitment of appropriate patient populations to the implementation of decision aids and the eventual measurement of outcomes. A significant challenge lies in recruiting patients at the optimal stage of decision-making, such as before dialysis initiation. The unpredictable progression of kidney disease often leads to patient attrition or delayed enrollment [102].
Limits in capturing long-term SDM outcomes
SDM research tends to focus on immediate outcomes, such as decision quality, rather than long-term results. Consequently, it is challenging to assess outcomes that require long-term observation, such as treatment adherence, long-term health outcomes, and sustained patient satisfaction. These limitations highlight the need for ongoing follow-up studies to evaluate the broader and longer-lasting impact of SDM interventions [47,52].
Difficulties in scientific validation
Despite growing interest in SDM, there is still a lack of high-quality evidence to support its effectiveness [42]. Most existing studies rely on retrospective designs or observational methods, such as interviews, which are inherently limited in establishing strong evidence [103,104]. While RCTs have been attempted, they often fail to demonstrate significant results. For example, the recent US-based RCT “PREPARE NOW,” involving 1,473 patients, found no significant differences between SDM and usual care [67]. Although pragmatic clinical trials are increasingly adopted as alternatives to RCTs, they face limitations in generating robust and conclusive evidence [47]. A 30-year clinical cohort study conducted at a single large center in Korea demonstrated the impact of a team-based approach and collaborative decision-making. In 2002, a multidisciplinary predialysis education program for CKD was implemented in which an education team consisting of nephrologists, nurses, social workers, and other professionals provided comprehensive education, presented unbiased treatment options, and facilitated consultations with PD nurses when necessary. The observed increase in the number of patients selecting PD as their KRT, along with a decline in urgent dialysis initiation, complications, and hospitalization, provides real-world evidence supporting the effectiveness of SDM [105]. In Taiwan and Japan, national-level reimbursement policies provide consultation fees to healthcare professionals to ensure patient participation [70,106]. Expanding patient involvement has been shown to reduce the risk of medical disputes and improve TS and medication adherence [41]. The SDM-ART study is expected to offer a comprehensive analysis beyond dialysis modality selection by incorporating factors, such as patient satisfaction, adherence, and cost-effectiveness [70], making its findings highly anticipated.
Methodological inconsistencies in SDM studies also pose significant challenges to scientific validation. Outcome measures, particularly those derived from patient-reported intervention delivery, are not standardized, resulting in a lack of common metrics for evaluating SDM effectiveness [107,108]. Tools such as the SDM-Q-9 are available but vary in validity and applicability across settings [29,31,109].
Moreover, many trials use small, regionally, or clinically localized samples owing to restrictive eligibility and recruitment criteria, thus reducing statistical power and generalizability [31,42,109].
CONCLUSION
SDM is an approach in which healthcare professionals and patients share comprehensive information to support patients in making the best decisions that align with their values. The SDM is particularly well suited for complex decisions, such as selecting KRT options. When SDM is applied to KRT, it enhances patients’ knowledge, satisfaction, and sense of autonomy [45,47,55,56,58,59]. In addition, it increases the selection rate for PD, which may lead to significant cost-saving benefits [24,48,62].
Although guidelines for SDM in KRT exist and various countries are developing and evaluating intervention models, there is no universally accepted clinical practice model. In this study, we proposed an SDM model for KRT that can be universally applied by healthcare professionals in nephrology. This evidence-based model builds upon established SDM frameworks, such as the ‘three-talk model [29,36]’ and the ‘six-step model [37],’ which incorporate the essential components of SDM. We anticipate that this model will facilitate the adoption and implementation of SDM in patients with CKD who are preparing for KRT. The use of tools such as PDAs is expected to further facilitate their applications.
However, many challenges remain in SDM, as it is not yet widely implemented in clinical settings and its effects are difficult to scientifically validate. There is a need for well-controlled study designs to establish robust scientific evidence for the effectiveness of SDM and studies focusing on long-term outcomes. Further research is required to address the heterogeneity of existing interventions and identify the most effective models or tools for clinical practice. The ongoing SDM-ART [70] is anticipated to provide valuable insights into the application of SDM to KRT. We hope that further studies will continue to advance patient-centered care in KRT.
Notes
CRedit authorship contributions
Hyun Jung Shin: resources, investigation, data curation, writing - original draft, writing - review & editing, visualization; Seoyoung Choi: resources, investigation, writing - original draft; Sejoong Kim: conceptualization, methodology, resources, investigation, data curation, validation, writing - original draft, writing - review & editing, visualization, supervision, project administration, funding acquisition
Conflicts of interest
The authors disclose no conflicts.
Funding
This research was supported by grants from the Patient-Centered Clinical Research Coordinating Center (PACEN), funded by the Ministry of Health & Welfare, Republic of Korea (grant numbers: HI19C0481, HC20C0054).
