Web-based Advance Care Planning Intervention for Patients With Kidney Failure on Dialysis: Pilot Testing of 'My Voice'

Duke-NUS Graduate Medical School100 enrolled

Overview

'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.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

100

Conditions

Kidney Failure, Chronic Therapy; Hemodialysis

Interventions

'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.

Eligibility

Sex: ALLMin age: 21 YearsHealthy volunteers:

Medical Language ↔ Plain English

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 Exclusion Criteria: For Caregivers * Those who are foreign domestic workers/maids * Are not easily contactable via mobile phone or landline

Outcomes

Primary Outcomes

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.

Time frame: Post baseline and within 8 weeks