'My Voice' is a website intervention developed to enable advance care planning (ACP) conversations for patients with kidney disease on dialysis, educate patients on their illness, help identify their goals and preferences for EOL care, and coaches them on how to speak with their HCPs and loved ones. This study aims to evaluate if 'My Voice' intervention improves quality of ACP conversations between patients and providers, and patients and family carers; improves patient's knowledge about kidney failure, engagement in ACP and preparedness for future end of life care compared to usual practices for ACP in dialysis centres.
Singapore citizens or permanent residents; aged 21 years (age of majority) or older
CKD stage 5; receiving dialysis
clinical deterioration with a terminal condition or
intolerability to dialysis or
Patients with cognitive impairment or serious mental illness will be excluded
Patients who had prior serious illness conversations (SIC) will be excluded
Are not easily contactable via mobile phone or landline
Those who are foreign domestic workers/maids
Parallel
My Voice website intervention with patient and caregiver modules
Other intervention'My Voice' is an interactive web-based ACP intervention tailored for patients with kidney failure on dialysis, and their caregivers, and includes patient and caregiver modules. Patient module has 6 steps consisting of a series of videos, value-clarification exercise (VCE) identifying goals and values for care, and knowledge quiz, and a summary My Voice document that is generated shared with patients, designated surrogates and HCPs. Automated reminders are sent to revisit My Voice. Caregiver module has 4 steps with videos and quiz, with access to their loved one's summary My Voice document containing goals of care and values.
Quality of ACP conversations (serious illness conversations) between patients and physicians/health care providers
Quality of ACP conversations will be measured using a scoring sheet developed for the study. One point will be given for every SICG topic discussed with score min to max of 0 to 13. Higher scores indicate higher quality.
Change in kidney disease and dialysis knowledge scores
Collected using knowledge questions designed by the research team. Higher scores indicate higher knowledge
Change in ACP engagement
Using the 9-item Advance care planning engagement scale. 9 to 45 (Min to Max) value, with higher value indicating higher engagement
Change in patient preparedness
Assessed using Preparedness for end-of-life decision-making scale. 20 to 80 (min to max) scores, with higher scores indicating better preparedness
Change in proportion of patients who had ACP conversations with family caregivers/spokesperson
Based on self-reported number of ACP conversations collected in the survey
Click on the lead sponsor to view all of their trials.
Duke-NUS Graduate Medical School
Lead sponsor
National Kidney Foundation, Singapore
Collaborator
