PHASE 1 Facilitating discussion on treatment preferences and advance care planning in cancer patients using the vignette technique Funding: Department of Health, Victoria Investigating team: Dr Natasha Michael Dr Annabel Pollard Nikola Stepanov Dr Odette Spruyt A/Prof Clare O’Callaghan A/Prof Joey Clayton

Patients do not select or reject diagnostic or therapeutic interventions in a vacuum; they choose interventions according to the clinical context in which they find themselves Brett AS. Limitations of Listing Specific Medical Interventions in Advanced Directives. JAMA Aug 1991;226(6) COMMUNITY ORGANISATION Doctor Patient Disease

29 Patients approached by Investigator and considered participation 6 Declined on follow up23 had further discussion with researcher 5 withdrew following discussion and receiving information on ACP 18 proceeded with interview 5: too unwell 1: did not return calls

3 Themes Theme A – ACP is individualised Theme B – ACP is dynamic and shared Theme C- Biopsycosocial and metaphysical informants of ACP

(RE) CONCEPTUALISE COMMUNICATE (RE) PLAN CONVERSE INTRODUCTION OF ADVANCE CARE PLANNING REJECTION CONTINUED REJECTION (RE) CONSIDER RELINQUISH

Extension of Phase 1 Focus groups and interviews of carers

33 Patients approached by Investigator and considered participation 6 declined participation18 agreed to participation had further discussion with researcher 5 in individual interviews13 in focus groups 9: too busy / unwell 2: patient non support 1: feel they cannot help 1: need time to digest situation 2:no reason given

PHASE 2 Facilitating discussion on treatment preferences and advance care planning in cancer patients using the vignette technique Funding: Peter Mac Foundation Grant Collaboration with Department of Cancer Experiences Research

Primary objective To test the feasibility of a cancer-specific ACP intervention to improve satisfaction with treatment decision-making and experience of care for patients with advanced cancer and their carers Secondary Objectives 1) To gather information on feasibility of the intervention in two clinical streams 2) To establish patients’, caregivers’ and professionals’ views of the acceptability of delivering or receiving the intervention 3) To explore the capacity to integrate ACP discussions into the electronic medical record and identify any key barriers and facilitators to implementation of the ACP intervention 4) To assess the suitability (sensitivity to change) of the i) Decision Conflict Scale, ii) Quality of Patient-Clinician Communication Scale, and iii) Pre-post ACP Intervention Visual Analogue Scale (VAS) Questionnaire, and inform the design of a phase III trial.

Study design 30 patients with stage III/IV and their carers (total 60) (English speaking, competent patients, AKPS >40) ↓ Baseline assessment and ACP information ↓ Patient and carer complete intervention ↓ Documentation integrated into e health system / opportunity to discuss with oncologist ↓ Repeat study measures 1 weeks later, qualitative interview ↓ Final study measures 4 weeks later

Outcome measures Patient and carer related experiences on decision making: Decision Conflict Scale, Pre-post VAS based on Phase 1, patient-physician communication scale Patient related characteristics Euroqol-5D15, FACT-G16, Modified Lyons scale Physician related experiences Perceptions of clinical relevance and value of ACP (a self-report survey) System related outcomes Numbers of ACP's completed, capacity to integrate ACP's into the electronic medical record, capacity to keep to ACP's current Qualitative data from patients, caregivers and professionals regarding acceptability and practicality