Table 2 Overview of study outcomes

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