Semra Ozdemir, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
Behram Ali Khan, Eric Finkelstein, Chetna Malhotra, Alethea Yee Chung Pheng, Jason Choo Chon Jun, Teo Boon We, Lim Sze Ying, Se Wei Xiong Vincent
Dialysis withdrawal (and subsequent transfer to palliative care) is recommended for patients with end-stage kidney disease (ESKD) who experience poor quality of life and poor prognosis. Evidence shows that patients undergoing dialysis frequently die in the hospital, have a more impaired quality of life than ESKD patients in palliative care, and face significant end-of-life healthcare costs. On the other hand, dialysis discontinuation increases the likelihood of experiencing a reconciled or good EOL experience. Evidence suggests that patients and their families may be unaware of the option to withdraw from dialysis, unsure of the appropriate time, and feel fearful or reluctant to speak of it to each other and/or with their healthcare providers (HCPs). Decision aids (DAs) have emerged as a promising strategy to help patients, family caregivers and clinicians make informed treatment choices. However, there are no established guidelines or educational materials regarding dialysis withdrawal in Singapore.
The study aims to develop a web-based, interactive DA to facilitate communication on dialysis withdrawal and transition to supportive care consistent with patients’ values and care preferences. The DA is intended for the use of patients, caregivers, and HCPs to facilitate communication and decision-making to transition to supportive care. The DA has the potential to improve patient’s quality of life at the end-of-life, help patients experience a good death and help caregivers experience better bereavement adjustment. The specific aims include:
Aim 1: Environmental scan & pre-development interviews
1a. Environmental scan on the available educational materials on dialysis withdrawal in Singapore and other countries
1b. Qualitative interviews to assess decision-making experiences with dialysis patients who are eligible for palliative care, their family caregivers, and HCPs who provide care to dialysis patients.
Findings from Aim 1 will be used to develop the DA.
Aim 2: Development & pilot-testing of DA
Design and pilot-test the acceptability and usability of the DA in English and Mandarin for dialysis patients, family caregivers, and HCPs in Singapore.
We hypothesize that users will find the DA acceptable and usable.
Environmental scan of literature to identify DAs used in other countries for dialysis withdrawal. One-to-one qualitative interviews of 60 participants (20 dialysis patients doing poorly on dialysis or intend to stop dialysis; 20 family caregivers (and family caregivers of recently deceased dialysis patients; 20 HCPs including nephrologists, nurses, renal counsellors and clinical psychologists).
Interactive web-based DA will be developed based on the International Patient Decision Aid Standards (IPDAS) collaboration guidelines including an information section and a value clarification exercise. DA will be pilot tested with 30 participants (10 dialysis patients doing poorly on dialysis or intend to stop dialysis, 10 family caregivers and 10 HCPs). During a counselling session the DA will be presented to patients and family caregivers while HCPs will review the DA themselves. We will then use structured questionnaire to assess acceptability (acceptability scale), and usability (system-usability scale) of the DA. We will also use open-ended questions to receive feedback on the DA. The DA will be refined till favourable responses to acceptability and usability are reached.
National Kidney Foundation
The study ultimately will lead to the development of culturally relevant patient decision aid to be used by dialysis patients especially for ESKD patients who are tolerating dialysis poorly or intend to stop dialysis, their family caregivers, and HCPs. The DA has the potential to improve patient quality of life at the end-of-life, help patients experience a good death and help family caregivers experience better bereavement adjustment.
Project Start Date:
1 August 2021