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| Name | Class |
|---|---|
| National Kidney Foundation, Singapore | OTHER |
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'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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention group | Experimental | Patients will view My Voice website intervention and complete patient module. They will also receive standard of care for advance care planning [namely serious illness conversation (SIC)] with the health care provider at the dialysis centers. Caregivers will view My Voice website intervention and complete caregiver module. |
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| Usual care group | No Intervention | Patients will receive standard of care for advance care planning -namely the serious illness conversation (SIC) with the health care provider at the dialysis centres. Caregivers will receive no intervention. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| My Voice website intervention with patient and caregiver modules | Other | '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. |
| Measure | Description | Time Frame |
|---|---|---|
| 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. | Post baseline and within 8 weeks |
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| Measure | Description | Time Frame |
|---|---|---|
| Change in kidney disease and dialysis knowledge scores | Collected using knowledge questions designed by the research team. Higher scores indicate higher knowledge | Baseline to 8 weeks |
| Change in ACP engagement |
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:
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
Exclusion Criteria: For Patients
Exclusion Criteria: For Caregivers
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Chandrika Ramakrishnan, MBBS; MPH | Contact | +6566011253 | chandrika.ramky@duke-nus.edu.sg |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Duke NUS Medical School | Recruiting | Singapore | Singapore |
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Using the 9-item Advance care planning engagement scale. 9 to 45 (Min to Max) value, with higher value indicating higher engagement
| Baseline to 8 weeks |
| 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 | Baseline to 8 weeks |
| 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 | Baseline and 8 weeks |
| ID | Term |
|---|---|
| D051437 | Renal Insufficiency |
| ID | Term |
|---|---|
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
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