Deciding about Dialysis: Improving Decision-Making Among Older Adults with ESRD

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 DESCRIPTION (provided by applicant): Individuals 70 and older are the fastest growing group of patients with end-stage renal disease (ESRD). Research shows that decision-making regarding initiation of dialysis is impaired by poor communication and lack of understanding about the options for management of ESRD. Some small studies suggest that, among older adults, dialysis may be associated with longer life expectancy but possibly worse quality of life, compared to conservative management without dialysis. Yet little is known about what older adults can expect after initiating dialysis in terms of patient-centered outcomes such as functional status and cognitive function. Furthermore, even though the choice regarding dialysis initiation involves a series of difficult trade-offs between potential longevity gains with dialysi and potentially better quality of life with conservative management, there has been little research into patient, family, and clinician perspectives on this decision-making process, and very few resources exist to promote decision-making that reflects patients' values and informed treatment preferences. This proposal has the following three interrelated and complementary aims that address these challenges related to dialysis decision-making: 1) Define the trajectories of functional status and cognitive function for adults 70 and older with ESRD before and after initiation of dialysis, compared to the trajectories of adults not on dialysis. 2) Explor perspectives about the decision to initiate dialysis (versus maximum conservative management) among adults 70 and older, their families, and clinicians. 3) Develop and pilot test a decision aid for decisionally-capable older patients with impending ESRD and their families, designed to improve knowledge about dialysis and conservative management options and to improve clarity about one's values and treatment preferences. The first project is a quantitative analysis using nationally-representative longitudinal survey data from the Health and Retirement Study, linked with Medicare claims. The second project features qualitative semistructured interviews with patients, family members, and clinicians who are at different points in the decisionmaking process (before and after deciding about dialysis). The third project will use the knowledge gained from Aims 1 and 2 to inform the design of a decision aid specifically for decisionally-capable adults 70 and older who are expected to need dialysis within 12 months, which will be pilot-tested with patients. The results from Aim 3 will contribute preliminary data to an R01 proposal of a randomized-controlled trial of the decision aid. The overall objective of this K23 Career Development Award is to support the early career of Dr. Melissa Wachterman, a palliative care physician and health services researcher at Harvard Medical School. Dr. Wachterman is a promising junior investigator specializing in research related to geriatric palliative care. Her career goal is to become an independently-funded clinician-investigator conducting research that improves quality of care and patient-centered treatment decision-making for seriously-ill older adults and their families. This proposal builds o Dr. Wachterman's prior research on end-of-life care for older adults with chronic diseases such as dementia and her more recent work exploring older patients' perspectives on dialysis and communication barriers between nephrologists and patients when discussing prognosis. This K23 award will help Dr. Wachterman accomplish the following goals: 1) to obtain advanced training in biostatistics and epidemiology, including analytic skills using both longitudinal nationallyrepresentative survey data and administrative data; 2) to acquire advanced training in qualitative research methods; 3) to acquire an understanding of theoretical frameworks of shared decision-making and develop skills in decision aid development and evaluation; 4) to develop as an investigator to ensure a successful transition from this career development award to independent R01-level funding. To achieve these goals, Dr. Wachterman has chosen a mentoring team committed to her success as a clinician investigator that capitalizes on her joint appointments at three leading academic medical centers affiliated with Harvard Medical School: Brigham and Women's Hospital, VA Boston Healthcare System, and Dana Farber Cancer Institute. Her primary mentor is Dr. Nancy Keating, Associate Professor of Medicine and Health Policy at Harvard Medical School and an internationally-recognized health services researcher with expertise in palliative care. Her co-mentor is Dr. Edward Marcantonio, a geriatrician and internationallyrenowned clinical investigator in aging research. To complement the extensive expertise of Drs. Keating and Marcantonio, Dr. Wachterman has worked closely with them to carefully select a group of talented local advisors to provide additional knowledge and experience in qualitative research, decision science, nephrology, and biostatistics. She has also enlisted the support of a Steering Committee of nationally-known leaders with expertise relevant to her proposal. Overall, Dr. Wachterman will benefit greatly from working in Harvard's vibrant research community, which will provide her with skilled mentorship and support as she prepares to embark on her career as an independent investigator.