Measure 3.2
- Objective area
- Appropriate
- Outcome area
- Carer wellbeing
- Measure
- 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.
- Population
- People who received a service from a palliative care service provider participating in the Palliative Care Outcomes Collaboration (PCOC).
- Numerator
- Number of palliative care phases ending within the reference year with a valid Palliative Care Problem Severity Score (PCPSS) for ‘Family/Carer’ problems at phase start and end and for which the PCPSS for ‘Family/Carer’ problems improved or remained absent/mild.
- Denominator
- Number of palliative care phases ending within the reference year with a valid PCPSS for ‘Family/Carer’ problems at phase start and end.
- Computation
- (Numerator ÷ Denominator) x 100
- Disaggregation
- Age group, Sex, Socioeconomic area, Remoteness area, Diagnosis, Setting, Phase type, Problem severity at phase start. See Data sources for more information on these items.
- Source
- Palliative Care Outcomes Collaboration (PCOC) data collection.
- Definitions
- Palliative Care Problem Severity Score (PCPSS) – a clinician rated screening tool to assess the overall severity of problems within four key palliative care domains. This includes family/carer problems associated with a patient's condition or palliative care needs. Written, verbal, or observational information may be used by the clinician to assess severity. The scores are 0 – absent, 1 – mild, 2 – moderate and 3 – severe (Masso et al. 2016).
- A symptom is considered to have improved over the phase if there was at least a one-point change between phase start and end.
- Table 3.2.2 shows that a symptom is considered to have remained at a low level if the symptom at phase start was between 0 and 1 and did not increase.
Table 3.2.2: PCPSS improvement in measure 3.2 numerator Severity at phase start Score at phase start Score at phase end Absent 0 0 Mild 1 ≤ 1 Moderate 2 ≤ 1 Severe 3 ≤ 2 - Notes
- Available data do not allow the described measure to be tracked. Currently an alternative measure is reported. This measure describes carers’ experiences through the experience of the person with life-limiting illness and may not accurately reflect how well supported a carer feels.
- There is currently no complete national data on carer problems. However, part of the picture is available from the PCOC data collection. 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. Not all services participate in PCOC and so the data used for this measure only includes a subset of all palliative care delivered in Australia. Most services participating in PCOC are specialist palliative care services. See Data sources for more information.
- State and territory disaggregation has not been included for this measure. Further work is required to better understand the coverage of the PCOC data collection across different jurisdictions.
- All phases without a valid start and end PCPSS for ‘Family/Carer’ problems were excluded. PCPSS assessments are not performed at death.
- In 2022, 89.1% of phases had a valid PCPSS ‘Family/Carer’ at phase start and 64.5% of phases had a valid PCPSS ‘Family/Carer’ at phase end. Altogether 61.1% had valid PCPSS ‘Family/Carer’ at phase start and end. The most common reason for missing PCPSS ‘Family/Carer’ at phase end was death, followed by case closure/discharge to another setting.
- In 2022, 84% of terminal phases ended in death and only 12.7% of phases had valid PCPSS ‘Family/Carer’ at phase start and end.
Masso M, Allingham SF, Johnson CE, Pidgeon T, Yates P, Currow D, Eagar K. Palliative Care Problem Severity Score: Reliability and acceptability in a national study. Palliat Med. 2016 May;30(5):479-85. doi:10.1177/0269216315613904.