Development of an online patient decision aid for kidney failure treatment modality decisions

Guidelines on the management of chronic kidney disease (CKD) emphasize the importance of kidney failure treatment modality education and decisional support as patients progress to the more advanced stages of CKD [1‐3]. Shared decision-making (SDM) is recommended to support patients that have to make treatment modality decisions [3‐5]. In addition, a recent study showed that a majority of patients prefer a SDM-approach when they have to make this decision [6].

Shared decision-making requires that patients and clinicians proactively engage in a collaborative decision-making process [7‐9]. This process should be characterized by deliberation, during which patients become aware of their choice, understand all of their options, and get to consider what matters most to them. A three-step framework to help guide this process in clinical practice has been described [9]. This framework includes: 1) team talk, 2) option talk, and 3) decision talk. It also includes the use of decision support interventions (DSIs), such as patient decision aids (PtDAs), to further help patients and clinicians engage in SDM [9].

Patient decision aids are evidence-based tools that: 1) address a specific health-related decision, 2) provide patients with information on all of their options, and 3) guide them in decision-making through values-clarification and preferences-elicitation [10‐12]. We previously identified 29 PtDAs developed to support patients with advanced CKD in treatment modality decision-making [13]. From the 27 PtDAs selected for detailed assessment, just about half qualified as PtDAs according to the International Patient Decision Aids Standards (IPDAS) collaboration minimum standards criteria [14]. In addition, about two-thirds were developed with the input of patients, the importance of which has been previously addressed [15]. End-users have a key role in the design of PtDAs, and involving them in the developmental phase facilitates implementation by addressing barriers to using PtDAs in clinical practice. Furthermore, patients and clinicians often value different treatment outcomes [16]. Therefore, patients should be involved to ensure patient-relevant outcomes are incorporated in PtDAs. This may improve their risk perception and help them make decisions congruent with their expectations and values [11].

Real-world outcome information is increasingly promoted to support decision-making based on local data rather than international data that do not match patient specific situations and risk being outdated or incomplete [17]. A recent study performed for the European Commission identified 192 initiatives investigating the use of real-world outcome information, 60 of which focused primarily on its use for decision-making [18]. In the Netherlands, the Dutch ministry of Health, Welfare and Sport has recently invested €70 million in a national campaign to encourage outcomes-based decision-making in clinical practice [19]. As part of this campaign, our objective was to develop an online PtDA for kidney failure treatment modality decisions that: 1) provides patients with real-world outcome information, and 2) facilitates SDM in clinical practice. In doing so, we: 1) evaluated which treatment outcomes were considered useful by patients to support these decisions, and 2) involved key stakeholders in its development so as to develop a PtDA that meets the needs and preferences of end-users. In this article, we report our findings and describe the development of the ‘Kidney Failure Decision Aid’.

The ‘Kidney failure Decision Aid’ was developed for patients that have to make kidney failure treatment modality decisions. It provides patients with real-world information on patient relevant outcomes, and consists of three components designed to facilitate SDM in clinical practice. We affirm the compatibility of the IPDAS development process model with a user-centred approach for the development of PtDAs [30]. The involvement of end-users and other key stakeholders was invaluable in: 1) gaining insight on their needs and preferences regarding the design and content of the PtDA, 2) establishing ongoing collaboration with the Dutch kidney patient association and national Dutch data registries that provided essential content for its development, and 3) developing an effective implementation strategy.

Most of the clinicians that participated in our needs-assessment indicated that they were satisfied with the education and decisional support they could provide patients in the advanced CKD care pathway. Likewise, most patients were satisfied with the education they had received in the past, and the majority agreed that it had sufficiently helped them in making treatment modality decisions. These findings are consistent with a previous survey study that showcased low rates of regret about the decision to start dialysis among patients in the Netherlands [31]. This could explain why, in our needs-assessment, the proportion of patients that considered a new online PtDA beneficial to the decision-making process was markedly smaller compared to the proportion of clinicians that considered it beneficial. However, we cannot disregard that this difference could also be explained by a response bias (e.g. desirability bias) among the participating clinicians. Shared decision-making and the use of PtDAs have received increasing national attention in the Netherlands over the past years, and clinicians might have felt obliged to provide desirable answers in the survey. Moreover, clinicians may already have been aware of the potential impact that PtDAs have on the decision-making process. Several publications have demonstrated that patients who use PtDAs (e.g. the PREPARED, iChoose kidney, or Yorkshire Dialysis Decision Aid) are generally more knowledgeable about their treatment options, and have better scores of decisional quality and patient activation compared to patients that do not use PtDAs [32‐34].

The proportion of patients that wished to have PROMS in the PtDA was also smaller compared to clinicians. This was also the case for stories and experiences of peer-patients, and the impact of each treatment modality on social functioning and personal life. A recent systematic review that explored priorities of CKD patients relating to outcomes demonstrated that the most emphasised and feared outcome among patients were: 1) reaching kidney failure, and 2) having to choose between dialysis, transplantation and CCM [16]. This could explain why the patients that participated in our needs-assessment initially prioritized the basics, and more preferred to have the PtDA contain a detailed description of all treatment modalities alongside information regarding the pros and cons of each treatment modality, compared to PROMS, stories and experiences from peer-patients, or information about the impact of each treatment modality on social functioning and personal life.

Our collaboration with the Dutch kidney patient association and national Dutch outcome registries enabled us to develop a PtDA that contains all essential information for patients on one platform, and is easily used in parallel with standard educational programmes in the Netherlands. It also provided us with the survival data that we used to develop a ‘patients-like me’ infographic that we incorporated in the PtDA. In addition, our partnership with the Santeon hospitals enabled us to incorporate all other treatment outcomes that patients considered useful in the PtDA. These hospitals systematically measure and assess treatment outcomes in quality improvement cycles with the goal of improving patient care [25]. However, not all data was detailed enough to design ‘patients-like-me’ infographics for all treatment outcomes. We are now collaborating with other researchers currently collecting these data in the Netherlands, and plan on incorporating these in the PtDA as ‘patients-like-me’ infographics in the future. Another limitation is that patients can only use the PtDA if they are proficient in Dutch, and have the means and (digital) health-literacy necessary to navigate the interactive website. We actively encourage that clinicians instruct caregivers to help patients navigate the PtDA when they express difficulties in doing so. Moreover, the Dutch CKD care pathway also allows social workers and nurse practitioners to prompt patients to use the PtDA during intake appointments, and help patients use it when necessary. This creates an opportunity to help patients better prepare for: 1) future in-hospital educational appointments, and/or 2) consultations were the decision will be made. Similarly, online PtDAs can be used to help standardise treatment modality education when proprietary programs are inconsistent or lacking, allowing clinicians to work more efficiently and really engage their patients in deliberation and decision-making rather than having to educate their patients during consultations. Clinicians can also use online PtDAs to help educate patients that aren’t as mobile (e.g. due to physical disabilities) and/or live in rural areas [35]. Even though data have suggested that a large proportion of CKD patients have limited digital health literacy scores, many patients (especially minorities) are interested in using online health services [36]. Concurrently, these online health services (e.g. an online PtDA) have the potential to reduce disparities in healthcare, especially when they are part of multicomponent interventions that also include facility level policy and protocol changes [37].

We are among the first that asked patients to evaluate outcomes derived from the ICHOM and SONG standard sets on their usefulness for kidney failure treatment modality decision-making. The flexibility of each treatment modality, the survival of each treatment modality after treatment initiation, and the effect of each treatment modality on the residual kidney function over time were considered useful for this decision by the majority of patients. The least number of patients considered patient-reported levels of depression useful. This contrasts the ICHOM CKD standard set report [22] where patients considered depression a highly important outcome, and highlights the value of conducting a needs-assessment when it has yet to be determined what specific patients need for specific decisions. We had accordingly planned to perform focus groups with elderly and culturally diverse patients. We hypothesize that these patients have different needs and preferences regarding PtDAs and the use of outcome information for decision-making [38‐40]. However, we were unable to perform these focus groups due to the first wave of the COVID-19 pandemic. We encourage other researchers to explore this hypothesis in future projects.

The ‘Kidney Failure Decision Aid’ does not suggest patients choose a particular treatment modality but rather encourages patients and clinicians to engage in conversation and make decisions based on patients’ values and preferences. The steering group wanted the PtDA to focus on helping patients make decisions through the principles of SDM and our beta testing indicated that patients and clinicians believed that it would help patients make informed decisions, and that it would support values- and preferences-based decision-making. We are currently investigating the effectiveness of the ‘Kidney Failure Decision Aid’ in an interrupted time-series design study (Netherlands Trial Register no. NL8376) [41]. This study will provide preliminary evidence of its effects on SDM and other decision-making outcomes as perceived by patients.

In conclusion, we developed an online PtDA to support kidney failure treatment modality decisions that provides patients with real-world outcome information and facilitates SDM in clinical practice. The IPDAS development process model for PtDAs is compatible with user-centred design methods. The effects of the ‘Kidney Failure Decision Aid’ on SDM and other decision-making outcomes are currently being investigated in a clinical trial. Future studies should investigate the usefulness of real-world outcome information for kidney failure treatment modality decision-making in elderly and culturally diverse patient populations.