Table 3

Participant data variables

Demographic informationAge, gender, postcode, country of birth, relationship status, religion, English or other language spoken
Clinical informationDate of admission/visit, current/active medical conditions (categorised by organ systems), palliative care status, ECOG status (or estimated functional status if ECOG not available)
Type of documentation
(see figure 1)
Classified based on who completed documentation
Completed by:
  • The person (statutory and non-statutory ACD; other, eg, letter).

  • A health professional (medical orders/clinical care plans; ACP documentation).

  • Someone else (ACP documentation by family, substitute decision-maker, etc).

  • Miscellaneous ACP material (eg, brochure).

Details of documentationTime taken to find document, location of document in the health record, date of document, whether the document contains the person’s name, address and date of birth, information regarding who signed documentation (including witnesses where appropriate), treatment preferences and/or other preferences specified in the document, characteristics of medical orders
  • ACD, advance care directives; ACP, advance care planning; ECOG, Eastern Cooperative Oncology Group.