Semra Ozdemir, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
Eric Finkelstein, Lina Choong Hui Lin, Jimmy Teo Boon Wee, Sheryl Gan Shien Wen, Jason Choo, Lydia Lim, Valerie Ma, Koh Pei Si, Tazeen H. Jafar, Alethea Yee Chung Pheng, Lee Guozhang, Juan Marcos Gonzalez
For end-stage kidney disease (ESKD) patients aged 75 and above with comorbidities, the benefits of dialysis over kidney supportive care, which focuses on maintaining quality of life as opposed to life extension, are not clear. As there is no clear or “right” treatment choice, treatment decisions should be informed by patient preferences. However, currently in Singapore most patients choose dialysis and express decisional conflict and regret. Decision aid (DA) with values clarification exercise (VCE) can help patients choose a treatment that is concordant with their preferences and treatment goals.
First, the study aims to adapt the current materials we have developed (booklet and video) for elderly ESKD patients in a prior effort into an interactive web-based tool called myKIDNEY. It will provide patients with tailored and relevant information based on their age and medical history, and help them identify and express their preferences via a VCE. The second aim is to test the benefits of counselling with myKIDNEY to standard renal counselling via a randomized controlled trial.
First, the current decision aid will be adapted into an interactive web-based tool. The tool will allow users to provide information about their age, comorbidities, and preferences so that information (such as expected survival) can be tailored for the specific patient. Users can choose which sections of the DA to focus on so that they are not overwhelmed and burdened by information irrelevant to them. A web-based tool also provides all the information in one source, as opposed to a separate booklet and video, for ease of access by patients and caregivers. myKIDNEY will be available in English and Mandarin. We will use suitable language and display so that it is easy for the general population and the elderly to understand, and will follow the IPDAS Collaboration guidelines. We will conduct usability testing of myKIDNEY. Necessary changes will be made until the DA is being rated favourably by the physicians, patients and caregivers.
Next, the refined DA will be evaluated via a pre post design. Patients and caregivers are assigned to have a counselling session with a trained counsellor using either our patient decision aid (intervention) or the current counselling materials (comparison). Comparison arm participants receive standard ESKD counselling materials as is currently provided in the clinic. Intervention arm participants will be counselled using myKIDNEY and will completed the VCE. We will compare the decisional conflict, stated preference and actual preference of participants of both study arms.
Singapore General Hospital
National University Hospital
Shared decision-making is the gold standard for patient-centred care and facilitating decision-making for preference-sensitive decisions. We believe our decision aid will help facilitate this among elderly ESKD patients in the local population. In addition, if fewer patients will choose dialysis as we hypothesized, this will generate cost savings to the health system while at the same time allowing patients to choose their preferred treatment with lower chances of decisional conflict and regret. If our interactive tool is found to improve decision-making quality, we will work with the clinics in the country for the adaptation of our tool to the standard clinical practice.
Project Start Date:
1 October 2020
myKIDNEY: End-Stage Kidney Disease Interactive Decision Aid for the Elderly
myKIDNEY is available in English and Mandarin.
The decision aid is currently in the development process and will be made available soon.