Eric A. Finkelstein, Executive Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
Semra Ozdemir, Lina Choong Hui Lin, Helena Legido-Quigley, Chetna Malhotra, Sheryl Gan Shien Wen, Tazeen H.Jafar, Alethea Yee Chung Pheng, Cheung Yin Bun
Literature suggests that dialysis prolongs survival for younger and healthier patients with end stage kidney disease (ESKD). However, for elderly patients with comorbidities, dialysis may offer little to no survival benefits compared to kidney supportive care (KSC), also known as conservative management which focuses on pharmacological management of symptoms, dietary control and supportive care. Dialysis is also associated with greater costs, greater rates of hospitalization, and lower quality of life. Given these findings, one might expect KSC to be the preferred treatment for elderly ESKD patients, yet in Singapore most undergo dialysis.
It is our contention that elderly patients (and their family caregivers) are making treatment choices without full comprehensive information on the various available treatments. One of these reasons is that current counselling material is not tailored to older adults and does not sufficiently incorporate comparisons between dialysis and KSC, but focuses more on the different types of dialysis and even kidney transplant.
The objective of this research is to develop a patient decision aid (comprising of a booklet and video with patient testimonials) to help elderly ESKD patients to make an informed treatment choice that is consistent with their preferences, and subsequently get a preliminary assessment of the value of the patient decision aid.
First, we conduct qualitative interviews with ESKD patients and their family caregivers to explore factors that are influential in their decision to choose between dialysis and KSC, information that they would like to know, their treatment experiences, and to what extent they experience decision regret, if they do. We also conduct qualitative interviews with the members of an advisory panel that consists of nephrologists, palliative care physicians, nurses, social workers, renal coordinators and a patient representative. Using these findings from the interviews, we develop a patient decision aid, specifically for elderly ESKD patients. It conveys age-appropriate information about both dialysis and KSC in an unbiased and objective manner. The decision aid includes a booklet and a video with patient and caregiver testimonials on their experience with their ESKD treatment. For the links to the decision aid, click here.
We evaluate the booklet and video in a Phase-II trial. 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 (control). Control arm participants receive standard ESKD counselling materials as is currently provided in the clinic. Intervention arm participants receive the decision aid developed. We test whether our patient decision aid (intervention) influences stated (primary) and revealed treatment choice (either a form of dialysis or KSC) as compared to the counselling materials currently being used (control).
Singapore General Hospital
The study ultimately aims to lead to the development of an improved counselling material to be used as a patient decision aid, especially for elderly ESRD patients, which may allow the patients and family caregivers to make treatment choices with full information on the costs and benefits of the various treatment options.
Han E, Haldane V, Koh JJK, Quek RYC, Ozdemir S, Finkelstein EA, Jafar TH, Choong HL, Gan S, Lim LWW, Shiraz F, Legido-Quigley H. Health Expectations.2019; 22(5):1100-1110.
Han E, Shiraz F, Haldane V, Koh JJK, Quek RYC, Ozdemir S, Finkelstein EA, Jafar TH, Choong HL, Gan S, Lim LWW, Legido-Quigley H. BMC Public Health.2019; 19(1):1107.
Ozdemir, S., Choong, L.H.L., Gan, S.W.S., Lim, L.W., Malhotra, C., Jafar, T.H., Yee, A.C.P., Vishwanath, P., Tan, S., & Finkelstein, E. A.
Kidney international reports. https://doi.org/10.1016/j.ekir.2021.08.027
Project Start Date:
12 October 2017