Palliative Care Outcomes Collaboration Dataset

Collection frequency
Biannual

Palliative care services participating in PCOC submit data at the following times:
  • January – February (for the previous July – December reporting period).
  • July – August (for the January – June reporting period).
Baseline data
1 January – 31 December 2018
Latest data
1 January – 31 December 2022
Description of data source
PCOC, established in 2005, is a national palliative care outcomes quality improvement program. The program uses standardised validated clinical assessment tools to benchmark and measure outcomes in palliative care, including pain and symptom control, and timely access to services when they are needed to drive quality improvements.
Description of data source
The PCOC data collection includes patient demographics, clinical setting information, and patient outcomes collected via the 5 assessment tools:
  • Palliative Care Phase
  • Palliative Care Problem Severity Score (PCPSS)
  • Symptom Assessment Scale (SAS)
  • Australia-modified Karnofsky Performance Status (AKPS) Scale
  • Resource Utilisation Groups – Activities of Daily Living (RUG-ADL).
Data collected from July 2012 are based on PCOC Version 3.0. See the PCOC Data dictionary V3.0 for more information.
Participation in PCOC is voluntary and open to all palliative care service providers across Australia. Representation is sought from public and private health sectors, rural and metropolitan areas, and inpatient and community settings. However, not all services participate in PCOC and so the data only capture a subset of all palliative care delivered in Australia. A total of 180 services reported data to PCOC in 2022, and work is ongoing to expand this number. Most services that report data to PCOC are specialist palliative care services.
Variations in definitions/terminology due to differing funding models across jurisdictions may also impact on the comparability and interpretability of the data at the state, territory, and national level. As a result, no disaggregation by state and territory are presented for the measures using PCOC data in the 2024 release. 
Measures reported
1.1 Proportion of palliative care phases for people with life-limiting illnesses for which the distress related to pain improved or remained at a low level after intervention.

1.2 Proportion of palliative care phases for people with life-limiting illnesses for which psychological or spiritual problems improved or remained at a low level after intervention.
3.2 Proportion of palliative care phases for people with life-limiting illnesses for which family or carer problems improved or remained at a low level after intervention.
Age group
Patient age as at episode start date derived from the date of birth of the patient.

Disaggregation categories: 0–14, 15–24, 25–34, 35–44, 45–54, 55–64, 65–74, 75–84, and 85 or over.
Source: National Health Data Dictionary (METEOR Identifier 287007)
Sex
The sex of the patient according to the categories 'Male', 'Female', 'Indeterminate', and 'Not stated/ inadequately described'.
Disaggregation categories: Males, Females, Not stated/ inadequately described/ intersex.
Source: National Health Data Dictionary (METEOR Identifier 287316).
Remoteness area
The postcode of usual residence of the patient is used to derive remoteness area based on the Australian Statistical Geography Standard 2021.
Disaggregation categories: Major cities, Inner regional, Outer regional, Remote, Very remote.
Source: Australian Bureau of Statistics (METEOR Identifier 747271)
Diagnosis
The principal life-limiting illness responsible for the patient requiring palliative care.
Disaggregation categories: 31 PCOC diagnostic groups.
Source: PCOC Data dictionary V3.0
Socioeconomic area
The postcode of usual residence of the patient is used to derive socioeconomic area. Socioeconomic areas are based on the ABS Index of Relative Socioeconomic Disadvantage (IRSD), 2021.
Disaggregation categories: SEIFA IRSD quintiles (1–5 or lowest/ most disadvantaged to highest/ least disadvantaged socioeconomic area).
Source: Australian Bureau of Statistics (METEOR Identifier 762080)
Setting
The broad setting in which care was delivered. This includes inpatient settings which refers to admissions to hospital or hospice, and community settings which refers to care occurring in the patient's 'home'. For example, this may be in their private residence or residential aged care. See PCOC reports for the latest list of inpatient and community services.
Disaggregation categories: Inpatient, Community.
Source: PCOC Data dictionary V3.0
Phase type
A clinically meaningful period in a patient’s condition. The palliative care phase is determined by a holistic clinical assessment, which considers the needs of the patients and their family and carers. The 5 palliative care phases are stable, unstable, deteriorating, terminal and bereavement. A patient may move back and forth between phases (except bereavement).
Stable: patient problems and symptoms are adequately controlled by an established plan of care, and:
  • further interventions to maintain symptom control and quality of life have been planned, and
  • family/carer situation is relatively stable, and no new issues are apparent.
Unstable: an urgent change in the plan of care or emergency treatment is required because:
  • patient experiences a new problem that was not anticipated in the existing plan of care, and/or
  • patient experiences a rapid increase in severity of a current problem, and/or
  • family/carer circumstances change suddenly impacting on patient care.
Deteriorating: the care plan is addressing anticipated needs but requires periodic review because the:
  • patients overall functional status is declining, and/or
  • patient experiences a gradual worsening of existing problem, and/or
  • patient experiences a new but anticipated problem, and/or
  • family/carers experience gradual worsening distress that impacts on the patient care.
Terminal: death is likely within days.

Bereavement: the patient has died and bereavement support provided to family/carers is documented in the deceased patient’s clinical record (Masso et al. 2015).
Disaggregation categories: Stable, Unstable, Deteriorating, Terminal.

Source: PCOC Data dictionary V3.0.
Severity at phase start
Severity of distress related to 7 key symptoms recorded via the Symptom Assessment Scale (SAS) tool, and/or severity of problems assessed via the Palliative Care Problem Severity Score (PCPSS) at phase start.
Disaggregation categories: Absent, Mild, Moderate, Severe.

Source: PCOC Data dictionary V3.0.
Previous page
Next page