Table 3 Study outcome measures examining efficacy of intervention
Domain (instrument) | Details of instrument | Time |
|---|---|---|
Patient outcomes | ||
 Quality of life | QUAL-E [40] | Time 0 T1 (+ 4 weeks) T2 (+ 8 weeks) T3 (+ 12 weeks) T4 (+ 24 weeks) |
 Health-related quality of life and symptom impact | ||
 Mood | DASS-21 [43] | |
 Performance status | Australian-modified Karnofsky Performance Status (AKPS) (http://www.bmcpalliatcare.biomedcentral.com/articles/10.1186/1472-684X-4-7) | |
 Illness understanding | Prompted via nurse-led diary [44] | |
 Overall survival | Months | T 5 (Following patient death) |
Family carer outcomes | ||
 Quality of Life | CQOL-C [45] | Time 0 T1 (+ 4 weeks) T2 (+ 8 weeks) T3 (+ 12 weeks) T4 (+ 24 weeks) |
 Mood | DASS-21 [43] | |
 Preparedness to care | PCS [46] | |
 Satisfaction with care | FAMCARE [47] | T 5 (+ 12 weeks following patient death) |
Quality end-of-life indicators in last 30 days of life [47] | ||
 Hospital and ICU days | Patient medical record hospital/ monthly nurse-led diary | Following patient death |
 Number of emergency-department visits | ||
 Chemotherapy use | ||
 Place of death | ||
Cost-utility and resource allocation outcomes | ||
 Patient-reported, cost-utility weights, measured by a cancer specific multi-attribute utility index | QLU-C10D [48] | Study completion |
 Quality-adjusted life years | QALYs | |
 Incremental cost-effectiveness ratio | Actual cost ($) per unit of change in each outcome/health state/QALY gained | |