Choosing Wisely: A Decision Aid for Dialysis Therapies to Facilitate Person-Centered Kidney Care
Shared decision-making, an approach in which clinicians and patients partner to evaluate best available evidence for treatment options, discuss risks and benefits, and make informed decisions that align with goals and values, is a central tenet of person-centered care. For patients with chronic kidney disease (CKD) about to begin renal replacement therapy, choosing a dialysis modality is a critical decision that requires time, information, and importantly, an assessment of life goals. Simply put, choosing a dialysis modality requires patients and providers to engage in shared decision-making.
Image from Pixabay / Geralt et al
Patients often feel ill-informed regarding options for dialysis modalities and unprepared to discuss this with their providers. If coupled with excellent communication skills and empathetic listening, decision aids can help overcome such barriers and facilitate successful shared decision-making. As decision aids provide unbiased information about treatment options and initiate important conversations between patients and providers, they also have the ability to increase patients’ satisfaction in quality of care and attenuate decisional conflict or regret.
In a recent issue of AJKD, Subramanian et al evaluated the efficacy of an online dialysis modality decision aid developed as part of the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) study. The study, a randomized, parallel-group analysis of 140 English-speaking adults with CKD stages 4-5, tested for improvements in:
- preference for shared-decision making,
- decisional conflict,
- decision self-efficacy,
- knowledge regarding dialysis, and
- preparation for decision-making immediately after use of the aid.
The study is notable for several reasons. The study used a parallel-group design, meaning that patients, identified by randomly-generated identification letters, were alternatingly assigned to treatment vs. control arms. Given that carryover effects may have occurred had a cross-over design been used, using parallel groups was more appropriate. The intervention (decision aid) was informed by the International Patient Decision Aids Standards checklist, developed with input from patients, caregivers, and advocates, and assessed outcomes using validated measures rooted in decision-making theory.
In addition to measuring pre- and post-test changes in primary outcomes, Subramanian et al assessed whether differences between these responses differed by demographics. Unique characteristics shown to influence decision-making, such as subjective numeracy and health literacy, were also measured. The decision aid not only described the mechanics of and lifestyle changes associated with peritoneal and hemodialysis but also contained an interactive value clarification exercise that patients could engage in from the privacy of their own homes.
Patients viewed visual representations of each dialysis modality with information on some of their less tangible yet equally-important characteristics, such as the use of needles, the ability to travel, and the availability of social support from peer patients. Patients could also comment on the quality and acceptability of the aid using free-text responses. The study team’s commendable recruitment and retention efforts included invitations via telephone and social media, coordination with routine clinic visits, and provision of a $25 gift card upon study completion. The team also conducted up to five telephone calls or email messages per patient who was lost-to-follow-up. (View the decision aid exercise here in the supplemental information).
Results showed that use of the decision aid resulted in statistically significant reductions in decisional uncertainty and decisional conflict, as well as increases in dialysis-related knowledge. No effect modification by demographics was observed after correction for multiple hypothesis testing. Interestingly, participants maintained high pre- and post decisional self-efficacy (with average scores of approximately 80/100) regardless of use of the decision aid.
Few participants who initially chose a modality switched to an alternate one post-intervention. This may have been a sequelae of the higher socioeconomic status of the study participants, who were mostly white, male, on average below 65 years of age, and had adequate subjective numeracy and health literacy.
Additionally, fewer patients stated that they would choose peritoneal dialysis than hemodialysis, and black participants were found to score more poorly on measures of dialysis knowledge. These results point to the importance of discussing all modality options and engaging in shared decision-making early and often with patients with CKD.
Perceived benefit of the decision aid in decision making, understanding options, and knowledge. Three items with responses on a Likert scale from “not at all” to “extremely.” Figure 3 from Subramanian et al, AJKD © National Kidney Foundation.
Some limitations of the study include that that many participants were lost to follow-up (46 in the control arm and 48 in the intervention arm), though the authors state that according to sensitivity analyses, the loss of these patients did not meaningfully affect study results. Some patients may have been less incentivized to complete the study, as the decision aid required completion in one sitting. Finally, though each participant required home internet access and adequate computer literacy, evidence and expert opinion suggest that tailoring materials to age and literacy level may make web-based decision aids feasible for wide use. Future studies can measure changes in decision-related outcomes at longer follow-up, assess outcomes related to trust in providers and processes of care, include options for conservative management, and attempt to engage more vulnerable populations.
Shared decision-making requires that clinicians provide information, support deliberation, assess values and preferences, and reach decisions that align with their patients. If used in the context of a trusting patient-provider relationship, aids such as the one in this study by Subramanian et al can catalyze important conversations and facilitate successful shared decision-making during a critical point in a CKD patient’s care continuum.
– Post written by Devika Nair, AJKDBlog Contributor. Follow her @devimol.
To view Subramanian et al (Open Access), please visit AJKD.org.
Title: Use of a Decision Aid for Patients Considering Peritoneal Dialysis and In-Center Hemodialysis: A Randomized Controlled Trial
Authors: L. Subramanian, J. Zhao, J. Zee, M, Knaus, A. Fagerlin, E. Perry2, J. Swartz, M. McCall, N. Bryant, and F. Tentori
DOI: 10.1053/j.ajkd.2019.01.030
While these results “point to the importance of discussing all modality options,” it is truly unfortunate that this PCORI-funded tool does NOT include even all of the dialysis options! Further, this tool was developed using input only from context-bound in-center HD patients who had never experienced any other option, and small numbers of PD patients whose time on in-center HD may have been limited–or negative, if it occurred at all. The finding that more patients who used this tool chose in-center is concerning, since multiple studies from around the world have demonstrated that at least 50% of patients who are effectively educated about dialysis options tend to choose PD, and often the numbers are even higher.
When this study was originally proposed, the researches intentionally left out the existence of home HD, not because it is underutilized in the U.S.–though it certainly is–but because the DOPPS data on which the proposal rested was almost entirely comprised of in-center HD, with a bit of P-DOPPS PD data toward the end. The choice not to mention home HD appears to have been an entirely pragmatic one to obtain funding (which was successful). Patients deserve the right to be told about ALL of their dialysis options and where to get them. In fact, the non-profit Medical Education Institute successfully advocated for patients to have this right when the Medicare Conditions for Coverage for Dialysis Facilities were updated in 2008.
Further, the “decision science” approach of showing patients two (or even more) options and saying, “Choose!” is inherently flawed, when patients don’t want ANY of the options–THEY want their lives to stay the same. Dialysis is not—and has never been—just a clinical treatment to remove water and wastes from the blood. It affects every aspect of life from sleep and sexuality to diet and energy level, to ability to work and travel–and much more. This is why research continues to find that most patients value quality of life over survival–and is also likely why (though no one seems to study this) 50% of American patients crash into dialysis emergently, even though an estimated half KNEW they had diabetes and/or hypertension and CKD. They just couldn’t face an impossible choice.
What DOES help patients to make an impossible choice? Starting with “What Matters to You,” so they can choose their priorities and THEN see what best fits their values and goals and lifestyles and can keep what brings them joy and makes their lives worth living.
MEI’s My Life, My Dialysis Choice (https://www.mydialysischoice.org) was also informed by the International Patient Decision Aids Standards checklist—and by what we learned over 25 years from 15,000 or more patients across EVERY dialysis modality. Endorsed by the American Association of Kidney Patients and Home Dialyzers United, this free tool–developed with NO outside funding because patients and clinicians needed help to guide this difficult choice–has been proven in pilot studies to significantly increase the numbers of patients who choose a home option (and research is ongoing). This finding is vital in light of the new “Advancing American Kidney Health Initiative” Executive Order that sets a goal of 80% of incident patients on home dialysis or transplant by 2025. Home dialysis includes more than just PD, which a number of patients will not be able to do. Home HD must grow as well if we, as a community, are to reach this ambitious target.