OBJECTIVE: To identify factors influencing patient involvement in decision-making in the context of chronic kidney disease (CKD) and effective interventions to support their decision-making needs. METHODS: A systematic review included studies and decision support tools that involved: (1) adults with CKD, (2) studies published from 1998-2008; and (3) a focus on patient decision-making needs, and/or barriers and facilitators to shared decision-making. Studies were quality appraised. RESULTS: Forty studies were appraised. These studies mainly focused on the decisions patients with CKD faced around the choice of renal replacement therapy and withholding/withdrawing dialysis. Moreover, studies typically focused on health care professional's provision of information about the decision rather than identifying decisional conflict and supporting patients in decision-making. No studies were found that identified the patient's point of view about factors that might influence or inhibit quality decision-making. Factors influencing CKD patient's participation in decision included: (1) interpersonal relationships; (2) preservation of current well being, normality and quality of life; (3) need for control; and (4) personal importance on benefits and risks. Of the four patient decision aids identified, none had been evaluated for effectiveness. CONCLUSION: Patients with CKD face decisions that are likely to cause decisional conflict. Most studies focused on information needs related to renal replacement therapy and withdrawing or withholding dialysis. There was less focus on other decision-making needs in the context of those choices and across the trajectory of CKD. Although patient decision aids and implementation of shared decision-making have been evaluated in patients with other medical conditions, little is known about interventions to support patients with CKD making quality decisions. PRACTICE IMPLICATIONS: Patients with CKD have decision-making needs across the trajectory of their illness. Although little is known about supporting patients with CKD decision-making, support could be provided with protocols and tools that have been developed for other chronic illness situations. Development of CKD-specific clinical practice guidelines that include decision support best practices could benefit CKD patients. Research priorities include development and evaluation of CKD focused decision support tools and processes.
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