Kidney Failure, Chronic Therapy; Hemodialysis
Conditions
Keywords
Advance care planning, Web intervention, Dialysis withdrawal
Brief summary
'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.
Interventions
OTHERMy Voice website intervention with patient and caregiver modules
'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.
Sponsors
National Kidney Foundation, Singapore
Duke-NUS Graduate Medical School
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
21 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
For patients * Singapore citizens or permanent residents; aged 21 years (age of majority) or older * CKD stage 5; receiving dialysis * Identified as eligible for SIC by NKF HCPs based on one or more of the following: 1. clinical deterioration with a terminal condition or 2. intolerability to dialysis or 3. having two or more unplanned hospitalizations for renal complications in the past 6 months (from medical records); or 4. known to palliative care or under conservative care as indicated in the discharge summary or 5. poor functional status indicated by the Fragility Assessment for Elders (FIFE) score \>4 * Normal cognitive function as indicated by Mini Mental Scale Examination (MMSE) score of 24 or more (based on medical record) * Able to speak and read English, Mandarin or Malay * Agreeable to be audio-recorded Inclusion Criteria: For caregivers * Aged 21 years old and above * Family caregivers of the patients recruited i.e. Caregiver primarily involved in providing care, ensuring provision of care, and/or in making decisions regarding patient's care, with no expectation of financial compensation * Able to speak and read English, Mandarin or Malay * Have a phone and/or an electronic device with internet access. * Agreeable to be audio-recorded
Exclusion criteria
For Patients * 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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Quality of ACP conversations (serious illness conversations) between patients and physicians/health care providers | Post baseline and within 8 weeks | 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. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Change in kidney disease and dialysis knowledge scores | Baseline to 8 weeks | Collected using knowledge questions designed by the research team. Higher scores indicate higher knowledge |
| Change in ACP engagement | Baseline to 8 weeks | 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 | Baseline to 8 weeks | 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 | Baseline and 8 weeks | Based on self-reported number of ACP conversations collected in the survey |
Countries
Singapore
Contacts
Primary ContactChandrika Ramakrishnan, MBBS; MPH
Outcome results
None listed