Research Patients who reach end stage renal disease (ESRD) late in life are increasingly being placed on hemodialysis (HD) without feeling they have ever been given a choice of treatment options. A moral imperative to treat everyone has resulted in a 57% age adjusted increase in HD among octa- and nonagenarians from 1997- 2003. Most patients report they were not presented with any options but to start dialysis. Despite growing recognition of this failure to respect patients' autonomy, little is known about how patients chose between ESRD treatment options or whether decision aids (DA) can improve the situation. DAs have been shown to empower patients to make choices consistent with their values and goals of care. DAs also increased patient participation in decision making and positively impacted patient-provider communication. We hypothesize that a simple in-visit DA that shows individualized risk and benefit estimates of treatment options for ESRD will facilitate shared decision making and help patients choose the treatment consistent with their values and preferences, increasing their autonomy. In this study we propose: To bolster the dignity, autonomy, and quality of life of elderly patients with ESRD by 1) Improving risk prediction and its point of care translation through a decision aid 2) Critically assessing the ethical and economic tensions surrounding the current payment reform in dialysis to safeguard patient autonomy and access to care and to inform future health policy. Successful completion of this project has the potential to affect the lives of thousands of elderly patients facing these difficult decisions annually in the US, through wide dissemination and policy implications. Candidate Dr. Thorsteinsdottir is passionate about justice in health care and resource allocation during these challenging times of aging populations. She brings to these tasks a unique mix of education and experiences. She is board certified in general internal medicine and palliative care and has completed a fellowship in bioethics at Harvard Medical School. She also has practiced in many different health care settings in different health care systems. By undertaking these aims Dr. Thorsteinsdottir will position herself for independence as an aging outcomes researcher. Her overall goal is to become an independently funded researcher and a national leader in geriatric outcomes research: To this end her objectives are 1. Improve skills in observational data analysis in older adult populations: Because of the paucity of randomized data on the frail elderly and inherent challenges with recruiting into such trials, it is essential to be able to navigate large observational registries to determine the risks and benefits of therapies for the very old. Formal development in this area will position Dr. Thorsteinsdottir for future collaborations with national as well as international colleagues through established institutional collaborations such as the High Value Health Care consortium and Karolinska University in Sweden as well the NIH funded AGES study in her native Iceland. 2. Improve skills in qualitative research techniques: To be able to develop interventions to improve decision making, Dr. Thorsteinsdottir will need a clear understanding of the values of patients, families/caregivers and clinicians. Qualitative research is essential to understand these values and to further her career development. 3. Acquire skills designed to facilitate translation of risk prediction into point of care interventions. Dr. Thorsteinsdottir plans to design a decision aid for patients confronted with a decision to dialyze. To do this she needs a solid foundation in the essential theories and skills of shared decision making. The K award would allow her to continue to seek answers to important questions regarding the individualized risk-benefit balance for dialysis in the frail elderly patients. It would allow her to pursue training in applied epidemiological methods, health economics and shared-decision making as well as qualitative and translational methodology and to forge links with researchers in the field for collaborative dissemination and implementation work in a future R01 proposal Mentorship and Institutional environment We have assembled a strong local mentorship team of NIH funded experts in the fields of knowledge synthesis, shared decision making, ethics and health economics as well as geriatrics, frailty and dementia that will guide Dr. Thorsteinsdottir through the proposed research and training. To augment this team, we have assembled a panel of nationally recognized advisors to monitor my progress through the career development program and provide mentorship and connections within their areas of expertise. The research will be conducted at Mayo Clinic a premier research institution with access to extensive epidemiology, health services and translational research resources that will enhance Dr. Thorsteinsdottir's chances to achieve her ambitious aims.
Most elderly patients with end stage renal disease start dialysis without a discussion of their goals of care or presentation of options. Many suffer rapid decline in functional status after starting dialysis and might choose differently if presented with alternatives. We propose to develop a tool to help patients and their providers weigh the risks and benefits of different treatments so that patients can choose the one that best fits their goals of care.
