Data source
Palliative Care Outcomes Collaboration
The Australian Palliative Care Outcomes Collaboration (PCOC), established in 2005, is a national palliative care outcomes quality improvement program. It includes information on patient demographics, clinical setting information and uses the standardised validated clinical PCOC assessment tools to benchmark and measure outcomes in palliative care, including
- Palliative Care Phase
- PCOC Symptom Assessment Scale (PCOC SAS)
- Palliative Care Problem Severity Score (PCPSS)
- Australia-modified Karnofsky Performance Status (AKPS) Scale
- Resource Utilisation Groups – Activities of Daily Living (RUG-ADL).
The PCOC data are provided by each participating palliative care service, using a standardised data submission process (a PCOC Version 3.0 Dataset Data Dictionary and Technical Guideline (PDF 762KB) is made to assist with this process). This process also involves standardised data quality checks and assurance procedures, which are completed by clinical, quality improvement and data experts. For further information, see Palliative Care Outcomes Collaboration Dataset 2023: Data Quality Statement (PDF 299KB).
The PCOC data are captured at 3 levels – the patient-level, episode-level, and phase-level.
- Patient-level information describes demographics such as sex, Indigenous status, preferred language and country of birth, and the place in which the patient died.
- Episode-level information describes the setting of palliative care service provision. It also includes information relating to the facility or organisation that has referred the patient, and how an episode starts and ends.
- Phase-level information describes the clinical condition of the patient during the episode. This information is derived from five clinical tools. These tools include measures that examine palliative care phase, the patient’s functional status and performance status, symptom burden as assessed by examining symptom severity and distress, including pain and other common symptoms, the patient’s psychological/spiritual problems, and family/carer issues.
Information provided in this report is categorised into 2 broad settings of care –
- inpatient – admissions to hospital or hospice
- community – occurring in the patient’s 'home’. For example, this may be in their private residence or aged care.
Participation in PCOC is voluntary and contribution to the collection is sought from all palliative care service providers in public and private health sectors, across all regions, and across inpatient and community settings. However, not all services participate in PCOC. The data presented in this report therefore describes a subset of all palliative care delivered in Australia.
Data using Version 1 of the PCOC dataset were collected between January 2006 and January 2007. Version 2 of the dataset was enacted from July 2007, and Version 3 was implemented in July 2012. For more information, see PCOC Version 3.0 Dataset Data Dictionary and Technical Guideline (PDF 762KB).
The national information presented in this chapter reflect all palliative care services that submitted data for the 1 January 2014 to 31 December 2023 period. A full list of the services that contributed data to this report can be found on the Palliative Care Outcomes Collaboration website.
Outcome measures and benchmarks
In 2009, PCOC and participating services, developed and implemented a set of national outcome measures and associated benchmarks to drive service innovation and allow participating services to compare their service nationally. The most recent update was released in 2015, which included the addition of 6 measures to Benchmark 3 relating to fatigue, breathing problems and family/carer problems. More information can be found on the PCOC Research & data webpage.
Further detail on the definition and measurement of each outcome measure and associated benchmark are provided in the following.
Outcome measure 1: Time from date ready for care to episode start
Measures the time (in days) between the date the patient is ready to receive care and the actual start date of the episode of palliative care by the service. This is measured for all episodes of care and across all settings of care.
To meet Benchmark 1, 90% of episodes of care must commence on the day of, or the day following, the date ready for care.
This measure replaced ‘Time from referral to first contact for the episode’ in July 2013 in consultation with participating services.
Outcome measure 2: Time in unstable phase
Measures the number of days the patient spent in an unstable phase. An unstable phase alerts clinical staff to the need for urgent or emergency intervention requiring an associated change in the existing care plan. Once assigned, and with the new care plan in place, the clinical team monitor for improvements in the patient and/or family/carer condition. Improvement can be demonstrated through observation and clinical assessments (reducing symptom distress and problem severity scores). With signs of improvement, the new care plan demonstrates its effectiveness and thus, the patient/family/carer can be moved out of the unstable phase into another relevant phase. However, at any time a patient is identified as dying within days (clinical indicators), the phase is immediately changed to terminal phase.
For services to meet Benchmark 2, 90% of unstable phases must last for 3 days or less.
Outcome measure 3: Change in symptoms/problems
Symptoms and problems for Benchmark 3 include the items of pain severity, distress related to pain, distress caused by fatigue, distress caused by breathing problems, and family/carer problems.
Symptoms and problems are measured at the start and end of a phase, and although symptoms and problems can be measured throughout the phase, an outcome is defined as the change from the beginning and at the end of the phase. It follows that phase records must have valid start and end scores to be included.
Two of the five PCOC clinical assessment tools are used to measure these patient and family symptoms and problems: the patient-rated PCOC Symptom Assessment Scale (PCOC SAS) and the clinician-rated Palliative Care Problem Severity Score (PCPSS).
A positive outcome for a patient is to have the symptom/problem in the absent to mild range at the end of a phase (for example, when the type of phase changes or the person is discharged from the service).
There are 2 benchmarks for each symptom/problem. The first benchmark is that at least 90% of phases that start with patients experiencing absent/mild symptoms (or problems) remain absent/mild at the end of the phase. This is reflective of anticipatory care. The second benchmark is that at least 60% of phases that start with patients experiencing moderate/severe symptoms (or problems) reduce to an absent/mild level by the end of the phase. This is reflective of responsive care.
Outcome measures 3.1–3.4: Pain
Pain management is acknowledged as ‘core business’ of palliative care services; hence, measuring patient pain is considered to be a vitally important outcome for palliative care services. The PCPSS measures pain severity rated by the clinician, used in Benchmarks 3.1 and 3.2, and the PCOC SAS measures patient-rated distress from pain, used in Benchmarks 3.3 and 3.4.
Outcome measure 3.5–3.6: Fatigue
Fatigue is the most common symptom in palliative care patients who have advanced cancer or other serious and/or life-threatening illnesses. The PCOC SAS is used for Benchmarks 3.5 and 3.6.
Outcome measure 3.7–3.8: Breathing problems
Breathing problems is a common symptom reported by patients receiving palliative care. The PCOC SAS is used to measure patient distress related to this symptom. This is used for Benchmarks 3.7 and 3.8.
Outcome measure 3.9–3.10: Family/carer problems
The PCPSS family/carer domain measures problems associated with a patient’s condition or palliative care needs. The clinician reports on the severity of the problems of their family/carer. This is used for Benchmarks 3.9 and 3.10.
Outcome measure 4: Change in symptoms relative to the national average
Case-mix adjusted outcomes measure is used to compare the changes in symptoms relative to the national average. This measure allows services to compare the changes in symptoms and problem scores for ‘like’ patients (patients in the same phase who started with the same level of symptoms). It is calculated by measuring the mean change in symptoms on both Palliative Care Problem Severity Score (PCPSS) and PCOC Symptom Assessment Scale (PCOC SAS), after adjusting for both phase and the symptom score at the start of each phase.
The PCOC palliative care case-mix adjusted outcome measures include eight symptoms/problems:
- Four clinical reported problem severity using PCPSS, including pain, other symptoms, family/care problems and psychological/spiritual problems.
- Four patient reported symptom distress using PCOC SAS, including pain, nausea, breathing problems and bowel problems.
The baseline national average has been calculated based on the period January to June 2014. Each service is measured against this baseline national average for each 6-month reporting period. This allows each service to measure any change in their symptom management over time. A positive score indicates that a service is performing above the baseline national average and a negative score indicates that it is below the baseline national average.
For further details on each of the PCOC outcome measures and benchmarks, refer to PCOC Guide to National Outcome Measures and Benchmarks (PDF 733KB).