Although dialysis is associated with excess morbidity but no survival advantage for many elderly patients with end-stage renal disease (ESRD), the elderly make up a substantial and growing proportion of the ESRD population, with rates of dialysis initiation among the elderly increasing by more than 50% in the last decade. Elderly patients approaching ESRD who are engaged in shared, informed decision-making are more likely to make decisions about renal replacement therapy (RRT, i.e. dialysis, transplant, or conservative management) and end-of-life care that are consistent with their personal values?often resulting in preferences for less aggressive care (no dialysis) and greater utilization of conservative management (consisting of maximal medical management and palliative care titrated to optimize symptom control and quality of life). However, many elderly patients are not well informed of their options, reporting that dialysis is often presented to them more as a ?necessity? than as a ?choice? and frequently have unrealistic expectations about what dialysis can achieve. Decision aids are important tools in improving shared, informed decision-making; however, there is no standard educational program for patients asked to make decisions about RRT. To enable elderly patients with ESRD, in particular, to make informed choices about RRT that are consistent with their personal values, there is a need for improved educational tools that present the full spectrum of RRT options, including their benefits and burdens for elderly patients with significant comorbid conditions. To address this need, we propose to create tailored decision aids for elderly patients with ESRD by (1) using quantitative and qualitative data from a diverse sample of elderly patients and their surrogate decision makers at dialysis initiation and 6 and 12 months later to (2) iteratively redesign the conservative management section of an existing NIDDK-funded decision aid (PREPARED, which was developed without elderly patients or more recent literature about conservative management) and (3) pilot the redesigned decision aid among a convenience sample of elderly patients with advanced chronic kidney disease and their surrogates. The findings of this research will lay the groundwork for a subsequent R01-equivalent application to fund a clinical trial to evaluate decision-making consistent with personal values, quality of life, and survival outcomes of elderly patients in the US using the redesigned PREPARED materials. Additionally, this work will maximize the effectiveness and reach of previously NIDDK-funded work that could be used for all patients approaching ESRD, ultimately improving truly informed decisions and, therefore, outcomes for elderly patients with ESRD.
People with kidney failure are almost twice as likely to die as people with cancer, heart failure, and stroke. Even though dialysis can be life-saving, for many elderly people with kidney failure, dialysis will not help them live any longer or better than they would if their kidney failure was treated without dialysis. Also dialysis often leads to very aggressive care at the end of life that many elderly people may not have wanted if they fully understood the risks and benefits of all treatment options. This work will improve upon an existing decision aid to better explain these risks and benefits so that elderly people with kidney failure and their families can choose what is right for them.
