Outcome | Participant | Instrument | Measure description | Assessment |
---|---|---|---|---|
Specific aim 1 | ||||
 Health-related quality of life | Patient | FACIT-Pal | 46-item measure; quality of life scale (4 domains – physical, emotional, social, and functional well-being) and a palliative care subscale. It has demonstrated internal consistency reliability and validity for persons with advanced cancer. | Baseline, every 3 months for 12 months |
 Mood | Patient | CES-D | 20-item measure; symptom clustered in 4 domains – depressed affect, somatic complaints, positive affect, and interpersonal activity. The scale demonstrated adequate reliability and validity among community dwelling older adults in Singapore. | |
 Coping strategies | Patient | Brief-COPE | 28-item measure; coping strategies in 14 subscales – self-distraction, active coping, denial, substance use, use of emotional support, use of instrumental support, behavioural disengagement, venting, positive reframing, planning, humour, acceptance, religion, and self-blame. This scale has been validated in the cancer population. It has also been used among family caregivers of individuals with dementia in Singapore before. | |
 Palliative care concerns | Patient | IPOS | Brief measure of palliative care problems, covering physical and psychological symptoms, social and spiritual issues, communication, information needs, and practical concerns. IPOS has been translated to Chinese and validated in Singapore. | |
 Health state | Patient | EQ-5D-5L | 5-item descriptive system measuring 5 dimensions – mobility, self-care, usual activities, pain/ discomfort, anxiety/ depression; a visual analogue scale measuring overall health status. The tool has been validated in Singapore. | Baseline, every 3 months until death or end of study |
 Healthcare resource utilization | Patient | Electronic medical records | Dates of emergency department visits and hospital admissions, hospital bill size, date of first review by existing palliative care services, date of death, and place of death | Enrolment until death or end of study |
Specific aim 2 | ||||
 Health-related quality of life | Caregiver | SCQOLS | 15-item measure; quality of life measure covering 5 domains – physical well-being, mental well-being, experience & meaning, impact on daily living, and financial well-being. It has been developed and validated in Singapore. | Baseline, every 3 months, for 12 months |
 Mood | Caregiver | CES-D | Same as above | |
 Coping strategies | Caregiver | Brief-COPE | Same as above | |
 Satisfaction with care | Caregiver | FAMCARE | 10-item unidimensional scale measuring family satisfaction. It has been translated to Chinese and validated in Singapore | |
 Caregiving costs | Caregiver | Caregiving costs questionnaire | Employment status; productivity loss (hours missed from work, impairment while at work, and impairment in regular activities) due to caregiving | |
Electronic medical records | Dates of emergency department visits and hospital admissions, and hospital bill size | |||
Specific aim 3 | ||||
 Acceptability | Patient Caregiver | Structured feedback survey | Acceptability, relevance, comfort level, overall satisfaction, and intention to recommend ENABLE-SG to others in similar situations are rated on a 5-point Likert scale | End of study participation |
 Adoption | ||||
 Appropriateness | Patient Caregiver Healthcare provider | Semi-structured interviews | Interview guide developed based on the Consolidated Framework for Implementation Research (CFIR) | ≥ 6 months after baseline |
 Feasibility | ||||
 Fidelity | Health coach | Self-reporting checklist, field notes, recordings | Modifications to protocol, discussions from conducted coaching sessions | Throughout study period |
 Implementation cost | Health coach | Process maps, project records | Identify key intervention activities to elucidate cost of involved personnel and resources through a time-tracking system and an activity-based costing approach | |
 Penetration | Oncologist | Study records | Number and proportion of approached oncologists who agree for study to be conducted in their clinics |