Measure 1.1

Objective area
Effective
Outcome area
Physical wellbeing
Measure
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.
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 Symptom Assessment Scale (SAS) for ‘Distress from Pain’ at phase start and end and for which SAS ‘Distress from Pain’ improved or remained absent/mild.
Denominator
Number of palliative care phases ending within the reference year with a valid SAS for ‘Distress from Pain’ 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 data items. 
Source
Palliative Care Outcomes Collaboration (PCOC) data collection. 
Definitions
Symptom Assessment Scale (SAS) – a patient (or proxy) rated tool that assesses the level of distress using a numerical rating scale from 0 – no distress to 10 – worst possible distress for 7 key symptoms (insomnia, appetite problems, nausea, bowel problems, breathing problems, fatigue, and pain). Only SAS ‘Distress from Pain’ is used in analyses. SAS are grouped according to the categories: absent (0), mild (1-3), moderate (4-7) and severe (8-10) (Daveson et al. 2021). 
Table 1.1.2 shows that a symptom is considered to have improved over the phase if there was at least a one-point change between phase start and end. A symptom is considered to have remained at a low level if the symptom at phase start was between 0 and 3 and did not increase.
Table 1.1.2: SAS improvement in measure 1.1 numerator
Severity at phase startScore at phase startScore at phase end
Absent00
Mild1
≤ 1
Mild2≤ 2
Mild3≤ 3
Moderate4
≤ 3
Moderate5
≤ 4
Moderate6
≤ 5
Moderate7
≤ 6
Severe8≤ 7
Severe9≤ 8
Severe10≤ 9
Notes
  1. There is currently no complete national data on patient outcomes for people with life-limiting illnesses. 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.
  2. 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. 
  3. All phases without a valid start and end SAS for ‘Distress from Pain’ were excluded. SAS assessments are not performed at death. Most terminal phases end in death.
  4. A small number of PCOC services do not collect SAS.
  5. In 2022, 90.8% of phases had a valid SAS for ‘Distress from Pain’ at phase start and 66.7% of phases had a valid SAS for ‘Distress from Pain’ at phase end. Altogether 64.4% had valid SAS for ‘Distress from Pain’ at phase start and end. The most common reason for missing SAS ‘Distress from Pain’ at phase end was death, followed by case closure/discharge to another setting. 
  6. In 2022, 84% of terminal phases ended in death and only 12.7% of phases had valid SAS for ‘Distress from Pain’ at phase start and end.
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