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 4,625 patients who received palliative care in Queensland during January to June 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

Christiansen, Claire

Clapham, Sabina P

Connolly, Alanna M

Daveson, Barbara A

Foskett, Linda M

McPherson, Anna

English

Research Online

University of Wollongong Research Online Australian Health Services Research Institute Faculty of Business 2019 A profile of patients receiving palliative care in Queensland for January - June 2019 Alanna M. Connolly University of Wollongong, alannah@uow.edu.au Samuel J. Burns University of Wollongong, bsamuel@uow.edu.au Samuel F. Allingham University of Wollongong, samallin@uow.edu.au Claire Christiansen Anna McPherson See next page for additional authors Follow this and additional works at: https://ro.uow.edu.au/ahsri Recommended Citation Connolly, Alanna M.; Burns, Samuel J.; Allingham, Samuel F.; Christiansen, Claire; McPherson, Anna; Foskett, Linda M.; Clapham, Sabina P.; and Daveson, Barbara A., "A profile of patients receiving palliative care in Queensland for January - June 2019" (2019). Australian Health Services Research Institute. 1035. https://ro.uow.edu.au/ahsri/1035 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 Queensland for January - June 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 4,625 patients who received palliative care in Queensland during January to June 2019 and had their pain, symptom, family / carer and psychological / spiritual issues assessed as part of routine clinical care. Keywords patients, profile, -, january, queensland, care, palliative, june, receiving, 2019 Publication Details A. Connolly, S. Burns, S. Allingham, C. Christiansen, A. McPherson, L. Foskett, S. Clapham & B. Daveson, A profile of patients receiving palliative care in Queensland for January - June 2019 (Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, 2019). Authors Alanna M. Connolly, Samuel J. Burns, Samuel F. Allingham, Claire Christiansen, Anna McPherson, Linda M. Foskett, Sabina P. Clapham, and Barbara A. Daveson This report is available at Research Online: https://ro.uow.edu.au/ahsri/1035                Queensland | January to June 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 Queensland, January to June 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: Connolly A, Burns S, Allingham S, Christiansen C, McPherson A, Foskett L, Clapham S and Daveson B (2019) A profile of patients receiving palliative care in Queensland for January – June 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.au 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 October 2019   A profile of patients receiving palliative care in Queensland, January to June 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 4,625 patients who received palliative care in Queensland during January to June 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 Queensland, January – June 2019.    A profile of patients receiving palliative care in Queensland, January to June 2019 4 Patient characteristics Table 1 describes the demographics of patients receiving palliative care. Table 1 Patient demographic summary Patient demographics N % Sex Male 2,497 54.0 Female 2,125 45.9 Indigenous status Aboriginal and/or Torres Strait Islander origin 90 1.9 Not Aboriginal and/or Torres Strait Islander origin 4,308 93.1 Country of Birth Born in Australia 3,629 78.5 Born outside Australia 965 20.9 Preferred language English  4,502 97.3 Other than English 79 1.7 Primary diagnosis Malignant  3,541 76.6 Non-malignant 1,031 22.3 Age at beginning of episode Average age     71.7 Median age     73.0                 Figure 1 Patients by sex and age group The average age for females was  71.7 years The average age for males was  71.8 years  A profile of patients receiving palliative care in Queensland, January to June 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 23.3% of all palliative care patients.  Respiratory failure and cardiovascular disease are the most common non-malignant diagnoses, accounting for 8.3% of all patients.    A profile of patients receiving palliative care in Queensland, January to June 2019 6 Referrals to palliative care Table 2 Referral source over time Referral Source  Jul-Dec 2016  Jan-Jun 2017  Jul-Dec 2017  Jan-Jun 2018  Jul-Dec 2018  Jan-Jun 2019  N=4,615       N=4,854       N=4,810       N=5,215       N=4,941       N=5,670 Public hospital 64.6          64.3          64.3          66.5          65.7          67.1 Private hospital 12.7          12.9          12.0          10.9          12.7          11.0 Outpatient clinic 1.3           0.7           1.0           0.6           0.6           0.9 General practitioner 2.2           3.8           3.7           4.0           4.6           4.3 Specialist medical practitioner 1.2           2.3           2.5           1.9           1.8           1.7 Community palliative care service 13.3          10.8          11.8          11.9          10.7          10.9 Community generalist service 0.7           0.4           0.6           0.3           0.4           0.2 Residential aged care facility 0.4           0.5           0.3           0.3           0.1           0.4 Self, carer(s), family, friends 1.8           1.5           1.5           1.7           1.2           1.1 Other 1.4           2.1           1.8           1.5           1.7           1.6 Not stated/inadequately described 0.2           0.7           0.5           0.3           0.5           0.8 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 deteriorating  with an average duration of  6.6 days.   Figure 5 Phase at beginning of episode – over time   A profile of patients receiving palliative care in Queensland, January to June 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 (8.1%). The symptom causing the least distress is nausea, rated by patients as ‘absent’ 69.0% 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 Queensland, January to June 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 3,643 30.4 12.0 Unstable 2,247 18.7 2.9 Deteriorating 4,154 34.6 7.1 Terminal 1,950 16.3 2.1 All phases 11,994 100.0 6.9 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 7.1 days.  Figure 9 Phase profile overtime   Place of death For January - June 2019, 2,289 patients died in the care of a specialist palliative care service. Of these deaths, 15.2% occurred at the persons home, 0.7% in a residential aged care facility and 83.5% in hospital.     A profile of patients receiving palliative care in Queensland, January to June 2019 9 Data included Table 4 Data item completion Patient level items % Date of birth 100.0 Sex 99.9 Indigenous status 95.1 Country of birth 99.3 Preferred language 99.0 Primary diagnosis 98.9 Episode level items % Date of first contact 99.9 Referral date 100.0 Referral source 99.2 Date ready for care 99.8 Mode of episode start 98.7 Accommodation at episode start 99.4 Episode end date 98.5 Mode of episode end 99.8 Accommodation at episode end 99.4 Place of death 97.0 Phase level items % Phase end reason 99.3 Clinical assessments  (completion at phase start / discharge) % RUG-ADL Bed mobility 98.3 / 72.5 RUG-ADL Toileting 98.2 / 72.5 RUG-ADL Transfers 98.2 / 72.5 RUG-ADL Eating 97.6 / 72.3 PCPSS Pain 97.9 / 71.7 PCPSS Other symptoms 96.9 / 71.6 PCPSS Psychological / spiritual 97.5 / 71.7 PCPSS Family / carer 94.9 / 70.1 SAS Difficulty sleeping 84.0 / 60.3 SAS Appetite problems 86.8 / 61.9 SAS Nausea 86.7 / 61.7 SAS Bowel problems 86.7 / 62.4 SAS Breathing problems 86.7 / 62.5 SAS fatigue 86.9 / 63.5 SAS Pain 87.1 / 63.4 AKPS 99.2 / 72.7     A profile of patients receiving palliative care in Queensland, January to June 2019 10  Table 5  Number of patients, episodes and phases over time   Jul-Dec 2016  Jan-Jun 2017  Jul-Dec 2017  Jan-Jun 2018  Jul-Dec 2018  Jan-Jun 2019 Patients 3,876 4,094 4,129 4,424 4,237 4,625 Episodes 5,065 5,324 5,361 5,791 5,559 6,304 Phases 9,736 10,354 10,626 11,562 10,610 11,994 Average number of phases per episode* 1.9 1.9 2.0 2.0 1.9 1.9 *Calculated for closed episodes that started and ended within the reporting period and excludes bereavement phases.     A profile of patients receiving palliative care in Queensland, January to June 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 Queensland for January - June 2019

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A profile of patients receiving palliative care in Queensland for January - June 2019

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