Information about different treatment options and shared decision making in dialysis care - a retrospective survey among hemodialysis patients

Abstract

Background Hemodialysis (HD) and peritoneal dialysis (PD) are equivalent treatment alternatives for patients with end stage renal disease. In Germany, there is a legal obligation to inform every patient about all treatment alternatives and their possible harms and benefits. However, there is a low utilization of PD. Therefore, the question arises, whether HD patients perceive that they were informed about different dialysis options. We further investigate, if personal characteristics of informed and non-informed patients vary, and if both groups experienced the decision for their dialysis treatment as shared decision making (SDM). Methods The database was a nationwide postal survey of 590 HD patients from two statutory health insurers in Germany. Participants were asked whether they have been informed about both dialysis options. A logistic regression model examines impact factors on this information. We investigate differences in the German version of the 9-item SDM Questionnaire (SDM-Q-9) between informed and non-informed patients with a multivariate linear regression model. Results 56 % of the respondents reported they had been informed about different dialysis treatment options. Patients older than 65 had a 61 % lower chance than patients ≤ 65 for this information (p < 0.001). High educated patients had a 47 % higher chance for this information than patients with low education level (p = 0.030). Informed patients rated a higher SDM-Q-9 scores than non-informed patients (76.9 vs. 44.2; p < 0.001). Non-informed patients showed high values in those SDM-Q-9 items which had no regard to different treatment options. Conclusions A great proportion of HD patients – mostly elderly patients and patients with a low education level – did not perceive that they were informed about different dialysis options before dialysis was initiated. The current obligation to provide information about all treatment alternatives in Germany is a first step to assure the unselected access to different treatment options. But it has not reached routine application in health care yet. Information about different treatment options can pave the way for SDM. While SDM is considered to be a valuable tool in clinical medicine, there is still room for improvement for its successful implementation when it comes to decision making on different dialysis treatment options. Trial registration The MAU-PD study (Multidimensional analysis of causes for the low prevalence of ambulatory peritoneal dialysis in Germany) is registered at the German Clinical Trials Register. DRKS-ID: DRKS00012555 Link: https://www.drks.de/drks_web/setLocale_EN.do. Date of Registration in DRKS: 2018/01/04.

Influence of AI-based decision support on shared decision making in hemodialysis: a Wizard of Oz experiment

“…choosing the right dialysis modality, the duration and frequency of dialysis so far. 32 When studying AI-DSS to support such decisions in the future, it is advisable to account for patient values and preferences from the beginning, which can be summarized as value sensitive design. 33…”

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“…22,37,56,57 In one study of 590 German hemodialysis recipients, those who stated that they were informed about both hemodialysis and peritoneal dialysis had significantly higher SDM-Q-9 scores compared with patients who stated that 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.…”

“…Studies that address this topic have mostly included younger patients, did not use validated measures, were limited geographically, or were retrospective, evaluating treatment decision making in individuals who had already initiated dialysis, thus excluding those who chose conservative management. [27][28][29] Increased knowledge about SDM in nephrology clinics will help identify areas for improvement, implement interventions to increase SDM, and track SDM use over time.…”

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“…The SDM-Q-Doc scale maintained the same wording as SDM-Q-9 and showed good internal consistency (α = 0.88). Currently, the SDM-Q-9 and SDM-Q-Doc have been successfully applied in various studies in the areas of chronic kidney disease ( 24 ), otolaryngology ( 25 ), adult strabismus ( 26 ), and clavicular fracture ( 27 ).…”