Shared Decision Making Among Older Adults With Advanced CKD Ⅱ
Nov 06, 2023
Results
Participant characteristics Of 363 individuals randomized in DART, 350 completed the baseline SDM-Q-9 survey and were included in the analysis. Mean age was 77.6 ± 5.8 years, 58% were male, 13% identified as Black, and 48% had diabetes (Table 1). Overall, 20.6% of participants had a high school education or less, 28.4% had some college or post-high school education, 25.8% had a college degree, and 25.2% had a postgraduate degree. Mean eGFR was 22.6 ± 7.3 ml/min/1.73m2 , and the median (interquartile range) UACR was 233 (51 – 830) mg/g. Among the 350 participants, 44 (12.6%) had CKD stage 3, 260 (74.3%) had CKD stage 4, and 46 (13.1%) had CKD stage 5.
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Primary outcome: SDM-Q-9 scores and item responses
Figure 1 shows the distribution of SDM-Q-9 scores by item. Scores ranged from 0 to 100, with a mean score 52.5 ± 27.8. The lowest agreement was with “My doctor and I selected a treatment option together” (mean score 2.1 ± 1.7 on the 6-point scale ranging from 0 to 5 for individual questions), with 41% somewhat, strongly, or completely agreeing with the statement. The highest agreement (73%) was with the statement, “My doctor told me that there are different options for treating my medical condition,” (mean score 3.2 ± 1.6). Overall, there was a higher agreement with questions asking about agenda setting, such as “My doctor made clear a decision needs to be made” (57% agreement), and information sharing, such as “My doctor helped me understand all the information” (62% agreement). There was lower agreement with items addressing deliberation, such as “My doctor and I thoroughly weighed the different treatment options” (48% agreement), and decision-making, such as “My doctor and I reached an agreement on how to proceed” (50% agreement).
Exploratory analyses: Characteristics associated with SDM'
Table 1 presents the bivariate associations of SDM-Q-9 score quartiles with demographic, health, decisional readiness and education and support variables. Among demographic factors, male sex (p = 0.01) and older age (p = 0.02) were significantly associated with higher SDM-Q-9 score quartiles. Among clinical factors, lower eGFR (p = 0.04) and better self-reported health (p = 0.002) were associated with higher SDM-Q-9 scores. Among decisional readiness characteristics, patients more informed about kidney disease treatment options (p <0.001), those who had already decided on a treatment option (p <0.001), and those more certain about their decision (p <0.001) had significantly higher SDM-Q-9 scores. Additionally, higher satisfaction with medical care (CANHELP score) was significantly associated with higher SDM-Q-9 scores (p <0.001). Among education and support factors, prior kidney treatment options class attendance was significantly associated with SDM (p <0.001).
Table 2 shows the multivariable associations between SDM-Q-9 scores and the variables in Table 1. After adjustment, Black participants when compared to white participants (β=9.6, 95% CI 0.6 – 18.6), diabetes (β=6.9, 95% CI 0.5 – 13.4), being “well informed” (β=11.6, 95% CI 0.5 – 22.6) and “very well informed” (β=14.9, 95% CI 2.3 – 27.5) about kidney treatment options, higher decisional certainty (β=1.1, 95% CI 0.0 – 2.2), and kidney treatment options class attendance (β=8.2, 95% CI 0.7 – 15.7) were significantly associated with higher SDM. Table 3 displays results of the backward selection process for decisional readiness variables, controlling for age, sex, and race. Participants who were “very well informed” about kidney disease treatment options (β=19.6, 95% CI 6.7 – 32.5) and who had increased decision certainty (β=1.7, 95% CI 0.7 – 2.7) had significantly higher SDM-Q-9 scores. In Table 4, when using backward selection for education and support variables, only attendance at a kidney treatment options class was associated with higher SDM (β=14.7, 95% CI 8.3 – 21.2).
Discussion
Older adults with advanced CKD face decision complexity as they weigh the benefits and harms of available treatment options. In this study of older adults with advanced CKD receiving care from a nephrologist, we found that SDM was suboptimal. In our study, only 76 patients out of 350 (22%) scored at least an 80% on the SDM-Q-9, corresponding to strongly or completely agreeing to the SDM-Q-9 statements, despite having advanced CKD and established nephrology care. Our research highlights the need to improve SDM for older adults facing dialysis decisions.
In our study, patients rated items related to deliberation and decision-making lowest, indicating that patients experienced these aspects of SDM infrequently. These low scores are likely due to both physician and patient factors. Patients with higher eGFR in our study were less likely to experience SDM. Clinicians may not have discussed dialysis or other treatment options with patients with CKD stage 3 or early CKD stage 4 and stable kidney function. Additionally, when these discussions occur, patients may be reluctant to discuss their preferences with their clinician. Prior studies have shown that patients feel a power imbalance between themselves and the physician in the decision-making process, given their lack of medical knowledge and desire to be compliant with medical advice.13, 43 Patients report feeling timid in a clinical encounter, which limits their engagement and prevents effective discussion.43 Increasing patient knowledge about the treatment options, adequate preparation for the discussion, and emphasizing the importance of patients’ input, especially about their personal values, may help patients engage in SDM.43
Certain physician decision-making styles may also hinder deliberation and decision-making. Some physicians use the paternalistic approach when discussing complex topics, which prioritizes the physician’s opinion and discourages patient input. Others use the informative approach, which seeks to educate patients without advocating for a certain treatment, to avoid unduly influencing the patient.44 Both of these approaches reduce collaboration and may not lead to satisfactory decisional outcomes. Although we did not directly evaluate the nature of physician and patient interactions, reliance on paternalistic or informative approaches may have contributed to low scores in the deliberation and decision-making domains in our study. Provider training on SDM methods could assist clinicians in engaging in SDM more systematically. There have been increasing numbers of SDM training programs in medical schools and continuing medical education, and these programs commonly improve clinicians’ knowledge, attitudes, and skills regarding SDM.45-47 Further study on optimal training methods is needed.
Decision aids may help clinicians and patients navigate the decision-making process. Patient-facing decision aids often use written materials or web-based formats, which support SDM and address decisional needs.48 Studies of decision aids in advanced kidney disease found that they improved patient knowledge, advanced decisional readiness, and increased value-based decisions by encouraging patients to consider their own preferences and values.48, 49 Additionally, decision aids helped to engage patients in the decision-making process and assisted in patient-clinician communication.50 They are also feasible to use in clinical encounters; in a Cochrane systematic review, decision aids extended the consultation by a median of only 2.6 minutes longer.50 Thus decision-aids may be a valuable tool to facilitate SDM in nephrology clinics.
Additionally, clarifying patients’ decision-making preferences early in treatment options discussions can help tailor SDM to the individual.51 In our study, 67% agreed that their physician asked how they wanted to be involved in making the decision, an important aspect of SDM. Some patients prioritize physicians’ input and prefer a more passive role in the decision-making process, while patients who are confident and autonomous may want to decide without much physician input.52, 53 Furthermore, some patients may not want to participate in SDM. Identifying patients’ decision-making styles may help physicians to optimally support the patient.
In our study, those who were more certain about their kidney disease treatment options had higher levels of SDM. Given the cross-sectional analysis, the explanation for this correlation is unclear. Patients with more confidence and information about their kidney disease treatment choices may have had more effective interactions with their providers, leading to higher rates of SDM. Alternatively, experiencing SDM may lead to greater knowledge and decreased anxiety about the treatment outcomes, leading to increased decisional certainty. Further study is needed to determine what determines increased decisional certainty in this situation and how it relates to SDM.
Among potentially modifiable factors in our study, kidney failure options, class attendance, and being “very well informed” about kidney disease treatment options were significantly associated with SDM, suggesting that education is central to the decision-making process. Several studies show that patient education about advanced CKD can significantly affect patients’ clinical outcomes, such as reducing mortality, increasing home dialysis selection, and reducing hemodialysis catheter use.54, 55 Research also suggests that patient education can reduce decisional needs and facilitate decision-making.22, 37, 56, 57 In one study of 590 German hemodialysis patients, those who stated that they were informed about both hemodialysis and peritoneal dialysis had significantly higher SDM-Q-9 scores compared to patients who stated they were not informed.28 Improving the participation in and quality of advanced kidney disease options education is imperative to improve decisional outcomes.
Despite the importance of education on SDM and clinical outcomes, only 26% of participants in our study attended an educational class. Prior research also shows poor rates and effectiveness of advanced CKD options education in routine clinical practice.31 In surveys of dialysis patients, more than one-third stated they were not given information about other treatment options besides in-center hemodialysis.58-60 Patients report difficulty understanding the treatment options, a perceived lack of choice, and a need to make rushed decisions without thoroughly weighing their options.26, 61 Earlier referral to education classes, education tailored to patients’ health literacy and values, and frequent discussions about options may better inform patients of their treatment choices.22, 37, 62, 63 Increased knowledge about treatment options may increase patients’ confidence in their decision-making capabilities and increase their engagement in SDM.
In our study, the presence of care partners was not associated with SDM. Prior research has demonstrated the importance of family and care partners to facilitate SDM, as they help patients process the decision and provide emotional support.22, 37 However, other studies have shown that caregiver influence can also result in a higher degree of decisional regret.64-66 In a survey of 295 dialysis patients, most (60.7%) regretted their decision to start dialysis, and 13.9% reported that they chose dialysis due to their family’s preference rather than their own.65 Thus care partner support may increase SDM and patient satisfaction if care partners reinforce the patient’s own wishes, but may be harmful if care partners' preferences are contradictory to the patient’s preferences. In this study, we evaluated whether an individual identified a care partner and did not assess the degree of the care partner's involvement in decision-making.
This study has several strengths.
The DART study was a randomized controlled trial that recruited patients from four sites across the United States. The patients were geographically diverse and attended both academic and community nephrology clinics. The study enrolled adults 70 years or older and allowed for a focused examination of SDM among older individuals, which often differs from discussions with younger patients. In addition, the participants had pre-dialysis advanced CKD, and thus the study included patients who might choose conservative care or dialysis or receive a kidney transplant. This study provides insights into how older adults experience SDM in routine clinical practice when discussing advanced CKD treatment options.
This study has limitations. Study enrollment was limited to English-speaking individuals who had enrolled in a randomized controlled trial, and thus the study was subject to selection bias, which may have limited the generalizability of the findings. Additionally, the survey data may be affected by response and recall biases. As a cross-sectional study, the temporal directionality of examined relationships is unclear. Although most participants had CKD stage 4-5, the prognosis was heterogeneous. A substantial number of older adults with late CKD stage 3, early CKD stage 4, or stable eGFR may not yet have had treatment discussions with their clinician, despite being under the care of a nephrologist. Moreover, we were unable to capture many factors that may affect SDM, including patients’ motivation to participate in SDM, their decisional satisfaction, and aspects of their nephrology care, such as the SDM training of the clinician, clinicians’ decision-making style, frequency of clinic visits by the participant, and available supportive services. Additionally, we did not examine the mechanisms linking education to SDM, and thus it is unclear exactly how education and SDM relate. Given these limitations, we cannot make definitive conclusions about SDM in nephrology clinics.
In summary, many older patients with advanced CKD do not engage in SDM, despite existing guidelines.17-19 Patients who reported being well-informed about treatment options and attended kidney failure treatment options classes reported higher SDM, underscoring the importance of patient education for SDM. Continuing to teach SDM in nephrology training programs, using decision aids that support SDM in clinic, and preparing clinicians to engage in SDM may improve decisional outcomes for patients with advanced CKD.
Supplementary Material
Supplementary Table 1. Missing data
Article Information
Authors’ contributions: Designed the current study: KL, DEW, EJG, SK-W, TI, JBW; collected the DART Trial data: SL, TP; analyzed the data: HT; interpreted the data: KL, DEW, EJG, SK-W, TI, JBW, RF. Each author contributed important intellectual content during manuscript drafting or revision and agrees to be personally accountable for the individual’s own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate.
Support: Research reported in this work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Program Award (CDR-2017C1-6297) to KL and DEW. TI was supported by the National Heart, Lung, and Blood Institute grant K24HL150235. RF was supported by the National Institute of Diabetes and Digestive and Kidney Diseases grant P30DK114857 and a National Kidney Foundation of Illinois Young Investigator Grant. The funders did not have a role in study design, data collection, analysis, reporting, or the decision to submit for publication.
Financial Disclosure: Dr. Isakova received consulting honorariums from Akebia Therapeutics, Inc. Dr. Weiner has received consulting honoraria from Akebia Therapeutics (paid to Dialysis Clinic, Inc) and Cara Therapeutics. The remaining authors declare that they have no relevant financial interests.
Disclaimer: The views presented in this publication are solely the authors' responsibility and do not necessarily represent the views of PCORI, its Board of Governors, or Methodology Committee, or the position or policy of the Department of Veterans Affairs or the US government.
Data Sharing: The data underlying this article cannot be shared publicly to protect the privacy of the individuals who participated in the study.
Peer Review: Received November 3, 2021. Evaluated by 3 external peer reviewers and a statistician, with editorial input from an Acting Editor-in-Chief (Editorial Board Member David W. Johnson, MBBS, FRACP, PhD). Accepted in revised form Feb 9, 2022. The involvement of an Acting Editor-in-Chief to handle the peer-review and decision-making processes was to comply with AJKD’s procedures for potential conflicts of interest for editors, described in the Information for Authors & Journal Policies.
References
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