The Palliative Care Outcomes Collaboration (PCOC) is a national program that aims to improve the quality and outcomes of palliative care in Australia. This is achieved via a standardised clinical language that supports a national data collection. This report provides a high level profile of 6,150 patients who received palliative care in NSW and ACT during July to December 2019 and had their pain, symptom, family / carer and psychological / spiritual issues assessed as part of routine clinical care

Allingham, Samuel F

Burns, Samuel J

Clapham, Sabina P

Daveson, Barbara A

Eagar, Kathy

Foskett, Linda M

Kable, Le-Tisha T

Outcomes Collaboration, Palliative Care

English

Research Online

University of Wollongong Research Online Australian Health Services Research Institute Faculty of Business and Law 2020 A profile of patients receiving palliative care in NSW and ACT for July – December 2019 Samuel F. Allingham University of Wollongong, samallin@uow.edu.au Samuel J. Burns University of Wollongong, bsamuel@uow.edu.au Le-Tisha T. Kable University of Wollongong, lkable@uow.edu.au Linda M. Foskett University of Wollongong, lindaf@uow.edu.au Sabina P. Clapham University of Wollongong, sabinac@uow.edu.au See next page for additional authors Follow this and additional works at: https://ro.uow.edu.au/ahsri Recommended Citation Allingham, Samuel F.; Burns, Samuel J.; Kable, Le-Tisha T.; Foskett, Linda M.; Clapham, Sabina P.; Daveson, Barbara A.; Eagar, Kathy; and Outcomes Collaboration, Palliative Care, "A profile of patients receiving palliative care in NSW and ACT for July – December 2019" (2020). Australian Health Services Research Institute. 1099. https://ro.uow.edu.au/ahsri/1099 Research Online is the open access institutional repository for the University of Wollongong. For further information contact the UOW Library: research-pubs@uow.edu.au A profile of patients receiving palliative care in NSW and ACT for July – December 2019 Abstract The Palliative Care Outcomes Collaboration (PCOC) is a national program that aims to improve the quality and outcomes of palliative care in Australia. This is achieved via a standardised clinical language that supports a national data collection. This report provides a high level profile of 6,150 patients who received palliative care in NSW and ACT during July to December 2019 and had their pain, symptom, family / carer and psychological / spiritual issues assessed as part of routine clinical care. Keywords act, july, –, december, receiving, palliative, care, patients, nsw, profile, 2019 Publication Details S. Allingham, S. Burns, L. Kable, L. Foskett, S. Clapham, B. Daveson, K. Eagar & PCOC, A profile of patients receiving palliative care in NSW and ACT for July – December 2019 (Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, 2020). Authors Samuel F. Allingham, Samuel J. Burns, Le-Tisha T. Kable, Linda M. Foskett, Sabina P. Clapham, Barbara A. Daveson, Kathy Eagar, and Palliative Care Outcomes Collaboration This report is available at Research Online: https://ro.uow.edu.au/ahsri/1099                NSW and ACT |  July to December 2019  A profile of patients  receiving palliative care  PCOC is a national palliative care project funded by the Australian Government Department of Health  |  pcoc.org.au  A profile of patients receiving palliative care in NSW and ACT, July to December 2019 1           PCOC wishes to acknowledge the valuable contribution made by the many staff from palliative care services who have spent considerable time collecting, collating and correcting the data and without whose effort this report would not be possible. This work is copyright. It may be produced in whole or in part for study or training purposes subject to the inclusion of an acknowledgement of the source. It is not for commercial usage or sale. Reproduction for purposes other than those above requires the written permission of PCOC. Suggested citation: Allingham S, Burns S, Kable L, Foskett L, Clapham S, Daveson B, Eagar K and PCOC (2020) A profile of patients receiving palliative care in Australia for July – December 2019. Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong For additional information please contact:   The Palliative Care Outcomes Collaboration Building 234 (iC Enterprise 1), Innovation Campus University of Wollongong, NSW 2522 Tel: +61 2 4221 5092 email: pcoc@uow.edu.au website: www.pcoc.org.aud PCOC has made every effort to ensure that the data used in this report are accurate. Data submitted to PCOC are checked for anomalies and services are asked to re-submit data prior to the production of this report. We would advise readers to use their professional judgement in considering all information contained in this report. Published April 2020   A profile of patients receiving palliative care in NSW and ACT, July to December 2019 2 Table of contents Introduction ............................................................................................................................................ 3 Patient characteristics ............................................................................................................................. 4 Diagnosis ............................................................................................................................................. 5 Referrals to palliative care ...................................................................................................................... 6 Palliative care phase ............................................................................................................................... 8 Place of death ......................................................................................................................................... 8 Data included .......................................................................................................................................... 9 Glossary ................................................................................................................................................. 11   Introduction The Palliative Care Outcomes Collaboration (PCOC) is a national program that aims to improve the quality and outcomes of palliative care in Australia. This is achieved via a standardised clinical language that supports a national data collection. This report provides a high level profile of 6,150 patients who received palliative care in NSW and ACT during July to December 2019 and had their pain, symptom, family / carer and psychological / spiritual issues assessed as part of routine clinical care.  For more detailed information, including a summary of the national achievement against PCOC’s 20 benchmarked patient outcome measures, please see the companion report Patient outcomes in palliative care in NSW and ACT, July to December 2019.    A profile of patients receiving palliative care in NSW and ACT, July to December 2019 4 Patient characteristics Table 1 describes the demographics of patients receiving palliative care. Table 1 Patient demographic summary Patient demographics N % Sex Male 3,157 51.3 Female 2,993 48.7 Indigenous status Aboriginal and/or Torres Strait Islander origin 127 2.1 Not Aboriginal and/or Torres Strait Islander origin 5,862 95.3 Country of Birth Born in Australia 3,785 61.5 Born outside Australia 2,223 36.1 Preferred language English  5,164 84.0 Other than English 919 14.9 Primary diagnosis Malignant  4,549 74.0 Non-malignant 1,562 25.4 Age at beginning of episode Average age     73.5 Median age     75.0                  Figure 1 Patients by sex and age group The average age for females was  73.5 years The average age for males was  73.4 years  A profile of patients receiving palliative care in NSW and ACT, July to December 2019 5 Diagnosis Diagnosis reflects the primary illness responsible for the person requiring palliative care. These illnesses are classified as either malignant (cancer) or non-malignant (illnesses other than cancer).  Figure 2 shows how the split between malignant and non-malignant has changed since 2016, whilst Figure 3 shows a more detailed breakdown of diagnoses for the current six-months. Figure 2 Diagnosis over time   Figure 3 Diagnosis   Lung and colorectal cancer are the most common illnesses, accounting for 22.9% of all palliative care patients.  Respiratory failure and cardiovascular disease are the most common non-malignant diagnoses, accounting for 9.2% of all patients.    A profile of patients receiving palliative care in NSW and ACT, July to December 2019 6 Referrals to palliative care Table 2 Referral source over time Referral Source  Jan-Jun 2017  Jul-Dec 2017  Jan-Jun 2018  Jul-Dec 2018  Jan-Jun 2019  Jul-Dec 2019  N=5,116       N=5,296       N=5,930       N=5,890       N=6,140       N=6,452 Public hospital 55.1          54.8          57.8          61.1          59.6          59.8 Private hospital 4.8           5.1           5.2           4.4           6.1           6.2 Outpatient clinic 0.6           0.4           0.9           0.5           0.5           0.4 General practitioner 7.3           7.0           7.1           7.0           6.6           7.2 Specialist medical practitioner 9.6           9.5           9.1           6.3           6.7           7.1 Community palliative care service 18.6          19.3          16.0          15.8          15.7          14.6 Community generalist service 0.9           0.8           0.9           1.0           0.9           0.9 Residential aged care facility 1.1           0.9           0.7           0.7           0.5           0.8 Self, carer(s), family, friends 1.2           1.1           1.0           1.1           1.3           1.2 Other 0.7           0.9           0.9           0.9           0.7           0.7 Not stated/inadequately described 0.1           0.3           0.3           1.1           1.3           1.0 Total 100           100           100           100           100           100 Note: Only includes episodes that started during each six month reporting period. Figure 4 Phase at beginning of episode     The most common first phase is unstable  with an average duration of  2.2 days.    Figure 5 Phase at beginning of episode – over time   A profile of patients receiving palliative care in NSW and ACT, July to December 2019 7  Despite pain often being thought to be the most distressing symptom at the end of life, the patient rated symptom with the highest number of severe scores is fatigue (5.9%). The symptom causing the least distress is nausea, rated by patients as ‘absent’ (74.8%) of the time.    Figure 6 Symptoms and problems at episode start    Figure 7 Moderate and severe problems at episode start over time (PCPSS)   Figure 8 Moderate and severe symptoms distress at episode start over time (SAS)    A profile of patients receiving palliative care in NSW and ACT, July to December 2019 8 Palliative care phase The palliative care phase type describes the stage of the patient’s illness and provides a clinical indication of the level of care a patient requires. Table 3 describes the number of phases and phase length. Table 3 Profile of palliative care phase Phase type N % Average phase length (days) Stable 7,049 33.0 14.1 Unstable 4,471 20.9 2.4 Deteriorating 7,058 33.1 7.3 Terminal 2,765 13.0 2.1 All phases 21,343 100.0 7.7 Note: Phase records where phase length was greater than 90 days were considered  to be atypical and are excluded from the average calculations.   The deteriorating phase is the most common with an average duration of 7.3 days.  Figure 9 Phase profile overtime   Place of death For July - December 2019, 6,478 patients died in the care of a specialist palliative care service. Of these deaths, 14.7% occurred at the persons home, 3.1% in a residential aged care facility and 80.9% in hospital.      A profile of patients receiving palliative care in NSW and ACT, July to December 2019 9 Data included  Table 4 Data item completion Patient level items % Date of birth 100.0 Sex 100.0 Indigenous status 97.4 Country of birth 97.7 Preferred language 99.0 Primary diagnosis 99.4 Episode level items % Date of first contact 98.5 Referral date 99.8 Referral source 99.0 Date ready for care 90.6 Mode of episode start 99.8 Accommodation at episode start 99.7 Episode end date 96.1 Mode of episode end 99.7 Accommodation at episode end 97.9 Place of death 93.6 Phase level items % Phase end reason 100.0 Clinical assessments  (completion at phase start / discharge) % RUG-ADL Bed mobility 99.0 / 72.6 RUG-ADL Toileting 99.0 / 72.6 RUG-ADL Transfers 98.9 / 72.6 RUG-ADL Eating 98.5 / 72.3 PCPSS Pain 98.7 / 72.4 PCPSS Other symptoms 97.1 / 71.5 PCPSS Psychological / spiritual 98.3 / 71.9 PCPSS Family / carer 97.1 / 71.1 SAS Difficulty sleeping 94.2 / 67.7 SAS Appetite problems 94.2 / 67.7 SAS Nausea 94.5 / 67.8 SAS Bowel problems 94.4 / 67.9 SAS Breathing problems 94.5 / 68.1 SAS fatigue 94.4 / 67.9 SAS Pain 94.7 / 68.4 AKPS 99.0 / 75.4    A profile of patients receiving palliative care in NSW and ACT, July to December 2019 10   Table 5  Number of patients, episodes and phases over time   Jan-Jun 2017  Jul-Dec 2017  Jan-Jun 2018  Jul-Dec 2018  Jan-Jun 2019  Jul-Dec 2019 Patients 4,783 5,019 5,404 5,588 5,873 6,150 Episodes 5,925 6,149 6,863 6,967 7,383 7,738 Phases 15,620 15,990 18,142 19,001 20,204 21,343 Average number of phases per episode* 2.7 2.6 2.7 2.7 2.7 2.7 *Calculated for closed episodes that started and ended within the reporting period and excludes bereavement phases.         A profile of patients receiving palliative care in NSW and ACT, July to December 2019 11 Glossary AKPS The Australia-modified Karnofsky Performance Status (AKPS) is a measure of the patient’s performance across the dimensions of activity, work and self-care at phase start. It is a single score between 10 and 100 assigned by a clinician based on observations of a patient’s ability to perform common tasks relating to activity, work and self-care. Episode An episode of care is a period of contact between a patient and a palliative care service that is provided by one palliative care service and occurs in one setting. An episode of care ends when either; the patient is formally separated from the current setting of care; the patient dies; or  the principal clinical intent of the care changes and the patient is no longer receiving palliative care. Under this definition, a patient receiving palliative care is likely to have more than one episode of care. Patient PCOC defines a patient as a person for whom a palliative care service accepts responsibility for assessment and/or treatment as evidenced by the existence of a medical record. Family / carers are included in this definition if interventions relating to them are recorded in the patient medical record. As a result, if a patient is seen in two different services with different medical record systems they will be counted twice in the total number of patients. PCPSS  Palliative Care Problem Severity Score (PCPSS) is a clinical tool used for initial screening and ongoing coordination of specialist palliative care. Clinician rated, it facilitates the global assessment of four palliative care domains: pain, psychological / spiritual, other symptoms and family / carer. Phase Palliative care phase identifies 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 phases provide a framework for referrals, triage and care planning. RUG-ADL Resource Utilisation Groups – Activities of Daily Living (RUG-ADL) consists of four items (bed mobility, toileting, transfers and eating) and assesses the level of functional dependence, based on what a person actually does, rather than what they are capable of doing. SAS  Symptom Assessment Scale (SAS) describes the patient’s level of distress relating to individual physical symptoms. The symptoms in the scale are the seven most commonly experienced by palliative patients; difficulty sleeping, appetite problems, nausea, bowel problems, breathing problems, fatigue and pain. The instrument is designed to be a patient rated tool but also allows for rating by proxy (e.g. family, carer or clinician). 

A profile of patients receiving palliative care in NSW and ACT for July – December 2019

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A profile of patients receiving palliative care in NSW and ACT for July – December 2019

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