End-stage kidney disease and the power of decision-making

​Researchers are empowering the elderly in Singapore to choose their preferred treatment option when diagnosed with end-stage kidney disease.

Older adults with end-stage kidney disease (ESKD) and their caregivers can soon make more informed decisions about treatment options consistent with their values, and better communicate their choices to their families and physicians. Publishing in the journal Kidney International Reports, scientists led by experts at Duke-NUS Medical School reported on their new patient decision aid, which makes it easy for patients to systematically consider various aspects of available treatment options before choosing one.

According to Singapore’s 2019 National Population Health Survey, about 1 in 15 residents has diabetes, the leading cause of chronic kidney disease, which can eventually progress to ESKD—the stage where the kidneys can no longer function on their own. While patients with ESKD may have recourse to undergo a kidney transplant, older patients with other diseases may instead choose dialysis, which helps remove waste products and excess fluid from their blood, or to receive kidney supportive care, which involves modifying their diet and taking medications that help ensure their quality of life.

“The decision about which care strategy to pursue is not an easy one,” explained Assistant Professor Semra Ozdemir from the Lien Centre for Palliative Care (LCPC) at Duke-NUS, who is the study’s corresponding author. “Many factors have to be considered when choosing a treatment, such as expected survival, quality of life, medical costs, and the options of caregivers. Our decision aid aims to help patients understand their own values and treatment goals so that they can make care decisions that are consistent with their preferences.”

The decision aid developed by Asst Prof Ozdemir and her colleagues provides a balanced overview and comparison of dialysis and kidney supportive care to empower patients to communicate their choices with their family and physicians, and to help family caregivers understand how to support and respect patient decisions.

The team developed this tool from interviews with elderly ESKD patients, their informal caregivers, and healthcare providers from different disciplines who care for ESKD patients. Using information gathered during these interviews, they produced a booklet and a video with testimonials from patients and caregivers. The decision aid was then tested on a small group embarking on this decision-making process. Healthcare providers also evaluated the patient decision aid and provided feedback.

The researchers used this feedback to improve their tool. The process led to the development of a final patient decision aid, consisting of an information booklet, a decision guide booklet and an 18-minute video.

“Ours is one of the few patient decision aids specially designed for older adults with ESKD,” said the study’s senior author, Professor Eric Finkelstein, Director of LCPC and a professor at Duke-NUS’ Health Services & System Research Programme. “It provides balanced and neutral information about all relevant treatment options based on evidence on older patients and that are relevant to the local context.”

Duke-NUS Dean Professor Thomas Coffman, a nephrologist and the lead principal investigator of DYNAMO, a large multi-centre study that is focused on finding new solutions to prevent and treat diabetic kidney disease, added: “Elderly individuals who develop end-stage kidney disease face a bewildering set of treatment choices balancing questions of longevity versus quality of life. These new resources developed by the team at Duke-NUS provide curated information on various approaches for treatment empowering patients and their families to make decisions consistent with their goals of care.” 

The team is currently designing a web-based decision aid and ultimately plans for their tool to be used during counselling sessions in renal clinics in Singapore.

“End stage kidney disease (ESKD) is a devastating diagnosis for patients. The treatment options including dialysis have different implications in the young and the elderly especially those with co-morbid conditions. Using rigorous scientific method of prototype development, pilot testing, and extensive stakeholder engagement, the tools developed in our study to aid decision-making are specifically tailored for elderly patients in an Asian cultural context and health system. The same principles could be emulated in many other countries where ESKD burden is rising sharply especially in the elderly.”
- Professor Tazeen H. Jafar, Health Services & Systems Research Programme, Duke-NUS Medical School; senior co-author of the study, a nephrologist and principal investigator of major global health trials on hypertension and kidney disease

“Chronic kidney disease, which can progress to ESKD, remains a critical public health problem in Singapore and is a focus of research at Duke-NUS. This patient decision aid developed by Asst Prof Ozdemir and colleagues provides a meaningful way for informed decisions to be made and communicated by those who are affected so that their families and physicians can best respect their preferences and plan accordingly.”
- Professor Patrick Casey, Senior Vice-Dean for Research, Duke-NUS Medical School

Reference: Ozdemir, S., Choong, L., Gan, S., Lim, L., Malhotra, C., & Jafar, T. et al. (2021). Patient Decision Aid Development for Older Adults With End-Stage Kidney Disease in Singapore. Kidney International Reports. https://doi.org/10.1016/j.ekir.2021.08.027