Palliative Care and End-of-Life Care: PI 05j-Proportion of palliative care phases with improvement in family and/or carer problems, from moderate/severe to absent/mild at the end of the phase (clinician-rated), 2021
Identifying and definitional attributes
|Metadata item type:||Indicator|
|Short name:||PI 05j-Proportion of palliative care phases with improvement in family and/or carer problems, from moderate/severe to absent/mild at the end of the phase (clinician-rated), 2021|
|Synonymous names:||Change in symptoms and problems (PCOC)|
Palliative care phases that started with moderate/severe family and/or carer problems and ended with absent/mild family and/or carer problems as a proportion of all palliative care phases that started with moderate/severe distress from family and/or carer problems, using the clinician-rated Palliative Care Problem Severity Score (PCPSS).
The National Palliative Care Strategy 2018 (the Strategy; DoH 2019) has stated that quality of care should be routinely monitored in order for care to be assessed and improved across all care settings. In particular, the Strategy emphasises that it is essential that people receive palliative care that matches their needs and preferences. Monitoring for change in key symptoms during palliative care provides an indication of whether the care needs of a patient and their family are being met.
Palliative care phases are used to describe the care needs of patients and their families to indicate whether or not the current care plan meets these needs. A positive outcome for patients is to have symptoms and problems in the absent/mild range during their palliative care phase. For patients who experience moderate/severe symptoms and/or problems, the goal is for this to reduce to absent/mild by the end of the phase (PCOC 2021).
|Indicator set:||Palliative Care and End-of-Life Care Key Performance Indicators 2021|
Health, Qualified 21/10/2021
Collection and usage attributes
Palliative care services contributing to the Palliative Care Outcomes Collaboration (PCOC).
The PCOC is a national program that aims to systematically drive improvements in patient and carer outcomes using standardised validated clinical assessment tools to benchmark and measure outcomes in palliative care. Participation in the PCOC is voluntary and open to all palliative care service providers across Australia. Contribution to the collection is sought from services in:
Presented as a percentage.
(Numerator ÷ Denominator) x 100
Number of palliative care phases within the reference period where family and/or carer problems are moderate/severe at the start of a phase and absent/mild at the end of the phase
|Numerator data elements:|
Number of palliative care phases within the reference period where family and/or carer problems are moderate/severe at the start of the phase
|Denominator data elements:|
|Disaggregation data elements:|
Reference period for 2021 reporting: 2020.
|Unit of measure:||Phase of care|
Indicator conceptual framework
|Framework and dimensions:||1. Effectiveness|
|Organisation responsible for providing data:|
Palliative Care Outcomes Collaboration (PCOC)
|Other issues caveats:|
Data for this indicator is sourced from PCOC.
PCOC’s national longitudinal database was established in 2005, and in 2021 consists of more than 300,000 patients and greater than 1 million palliative care phases provided within hospitals, patients’ homes and in residential aged care facilities. The number of services reporting palliative care patient outcome data increased from 127 services in 2009 to 188 services in 2019, with most specialist palliative care providers within Australia participating in this voluntary national program.
PCOC has a set of rule checks and flags that ensure consistency of data entry at the point of collection by trained staff from participating services, and also comprehensive data quality checks at the point of data entry, data receipt and prior to data analysis (Woods et al. 2021). Limited missing data values are evident (i.e. <4% per item) (Daveson et al 2021).
Participation in PCOC is voluntary and open to all palliative care service providers across Australia. The data are administrative and embedded into routine clinical practice.
Source and reference attributes
Daveson BA, Allingham SF, Clapham S, Johnson CE, Currow DC, Yates P, et al. 2021. The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs. PLoS ONE 16(3): e0247250. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0247250
DoH (Department of Health) 2019. National Palliative Care Strategy 2018. Canberra: Department of Health. Viewed 9 June 2021, https://www.health.gov.au/resources/
PCOC (Palliative Care Outcomes Collaboration) November 2012. PCOC Version 3.0 Dataset: Data Dictionary and Technical Guidelines (version 1.2.0). Viewed 9 June 2021, https://documents.uow.edu.au/content/groups/public/
PCOC 2019. Assessment and Clinical Response Form. Viewed 9 June 2021, https://www.uow.edu.au/ahsri/pcoc/
PCOC 2020. Assessment forms. Viewed 9 June 2021, https://www.uow.edu.au/ahsri/
PCOC 2021. Patient Outcomes in Palliative Care: National Report July to December 2020. Viewed 9 June 2021, https://documents.uow.edu.au/content/groups/public/
Woods JA, Johnson CE, Allingham SF, Ngo HT, Katzenellenbogen JM, Thompson SC 2021. Collaborative data familiarisation and quality assessment: Reflections from use of a national dataset to investigate palliative care for Indigenous Australians. Health Inf Manag; 50(1-2):64-75. doi: 10.1177/1833358320908957.
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