Patient outcomes in Palliative Care: Results for Queensland July December 16 Detailed report March 17 PCOC is a national palliative care project funded by the Australian Government Department of Health www.pcoc.org.au
About the Palliative Care Outcomes Collaboration The Palliative Care Outcomes Collaboration (PCOC) is a national program that utilises standardised clinical assessment tools to measure and benchmark patient outcomes in palliative care. Participation in PCOC is voluntary and can assist palliative care service providers to improve practice. This is achieved via the PCOC patient outcome improvement framework which is designed to: provide clinicians with the tools to systematically assess individual patient experiences using validated clinical assessment tools, define a common clinical language to streamline communication between palliative care providers, facilitate the routine collection of national palliative care data to drive quality improvement through reporting and benchmarking, provide service-to-service benchmarking reports and opportunities to discuss sector results at benchmarking workshops, and support research using the PCOC longitudinal database (6-16). The PCOC dataset includes the clinical assessment tools: Palliative Care Phase, Palliative Care Problem Severity Score (PCPSS), Symptom Assessment Scale (SAS), Australia-modified Karnofsky Performance Status (AKPS) scale and Resource Utilisation Groups Activities of Daily Living (RUG-ADL). PCOC has divided Australia into four zones for the purpose of engaging with palliative care service providers. Each zone is represented by a chief investigator from one of the collaborative centres. The four PCOC zones and their respective chief investigators are: Central Zone North Zone South Zone West Zone Professor Kathy Eagar, Australian Health Services Research Institute, University of Wollongong Professor Patsy Yates, Institute of Health and Biomedical Innovation, Queensland University of Technology Professor David Currow, Department of Palliative and Supportive Services, Flinders University Dr Claire Johnson, Cancer and Palliative Care Research and Evaluation Unit, University of WA Each zone is also represented by one or more quality improvement facilitators, whose role includes supporting services to participate in PCOC and facilitating ongoing service development and quality improvement. The national team, located within the Australian Health Services Research Institute at the University of Wollongong, coordinates the patient outcomes reporting, education program, and quality activities across the four zones. If you would like more information or have any queries about this report please contact your local quality improvement facilitator or contact the national office at pcoc@uow.edu.au or phone (2) 4221 4411.
Table of Contents Introduction... 1 Section 1 Benchmark summary for Queensland Services... 3 Section 2 Outcome measures in detail... 4 2.1 Outcome measure 1 Time from date ready for care to episode start... 4 2.2 Outcome measure 2 Time in unstable phase... 6 2.3 Outcome measure 3 Change in pain... 8 2.4 Outcome measure 3 Change in distress from fatigue... 11 2.5 Outcome measure 3 Change in distress from breathing problems... 13 2.6 Outcome measure 3 Change in family / carer problems... 15 2.7 Outcome measure 4 Change in symptoms relative to the baseline national average (X-CAS)... 17 Section 3 Descriptive analysis... 21 3.1 Profile of palliative care patients... 22 3.2 Profile of palliative care episodes... 27 3.3 Profile of palliative care phases... 33 Appendix A Summary of data included in this report... 46 A1 Data summary... 46 A2 Data item completion... 48 Appendix B Additional information on profile of SAS and PCPSS... Appendix C Data scoping method... 52 Appendix D How to interpret benchmark profile graphs... 53 Appendix E Palliative Care Phase definitions... 54 Acknowledgements... 55 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report i
List of Tables Table 1 List of Queensland services included in this report... 2 Table 2 Summary of outcome measures by setting... 3 Table 3 Time from date ready for care to episode start by setting... 4 Table 4 Time in unstable phase by setting... 6 Table 5 Summary of outcome measure 3 change in pain... 8 Table 6 Summary of outcome measure 3 distress from fatigue... 11 Table 7 Summary of outcome measure 3 distress from breathing problems... 13 Table 8 Summary of outcome measure 3 family / carer problems... 15 Table 9 Summary of outcome measure 4 inpatient setting... 17 Table Summary of outcome measure 4 community setting... 18 Table 11 Indigenous status... 22 Table 12 Place of death... 22 Table 13 Country of birth... 23 Table 14 Preferred language... 24 Table 15 Primary diagnosis - malignant... 25 Table 16 Primary diagnosis - non-malignant... 26 Table 17 Age group by sex... 27 Table 18 Referral source by setting... 28 Table 19 Referral to first contact by setting... 29 Table Length of episode (in days) summary by setting... Table 21 Length of episode (in days) by setting... Table 22 How episodes start inpatient setting... 31 Table 23 How episodes end inpatient setting... 31 Table 24 How episodes start community setting... 32 Table 25 How episodes end community setting... 32 Table 26 Number of phases by phase type and setting... 33 Table 27 Average phase length (in days) by phase type and setting... 33 Table 28 Number and percentage of first phase of episode by setting... 34 Table 29 How stable phases end by setting... 35 Table How unstable phases end by setting... 36 Table 31 How deteriorating phases end by setting... 37 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report ii
Table 32 How terminal phases end by setting... 38 Table 33 Profile of PCPSS at beginning of phase by phase type inpatient setting (percentages)... 39 Table 34 Profile of PCPSS at beginning of phase by phase type community setting (percentages)... Table 35 Profile of SAS scores at beginning of phase by phase type inpatient setting (percentages)... 41 Table 36 Profile of SAS scores at beginning of phase by phase type community setting (percentages)... 42 Table 37 Australia-modified Karnofsky Performance Status (AKPS) at phase start by setting... 43 Table 38 Number and percentage of patients, episodes and phases by setting... 46 Table 39 Number of completed episodes and phases by month and setting... 47 Table Number of patients, episodes and phases by setting and reporting period... 47 Table 41 Item completion (per cent complete) - patient level... 48 Table 42 Item completion by setting (per cent complete) - episode level... 48 Table 43 Item completion by setting (per cent complete) - phase level... 49 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report iii
List of Figures Figure 1 Time from date ready for care to episode start, Queensland services compared to all services (BM1)... 5 Figure 2 Time in unstable phase, Queensland services compared to all services (BM2)... 7 Figure 3 Clinician rated change in pain, Queensland services compared to all services (PCPSS, BM3.1 and 3.2)... 9 Figure 4 Patient rated change in pain, Queensland services compared to all services (SAS, BM3.3 and 3.4)... Figure 5 Patient rated change in fatigue, Queensland services compared to all services (SAS, BM3.5 and 3.6)... 12 Figure 6 Patient rated change in breathing problems, Queensland services compared to all services (SAS, BM3.7 and 3.8)... 14 Figure 7 Clinician rated change in family / carer problems, Queensland services compared to all services (PCPSS, BM3.9 and 3.)... 16 Figure 8 Trends in outcome measure 4: Palliative Care Problem Severity Score (PCPSS) inpatient setting... 19 Figure 9 Trends in outcome measure 4: Palliative Care Problem Severity Score (PCPSS) community setting... 19 Figure Trends in outcome measure 4: Symptom Assessment Scale (SAS) inpatient setting... Figure 11 Trends in outcome measure 4: Symptom Assessment Scale (SAS) community setting... Figure 12 Stable phase progression... 35 Figure 13 Unstable phase progression... 36 Figure 14 Deteriorating phase progression... 37 Figure 15 Terminal phase progression... 38 Figure 16 Total RUG-ADL at beginning of phase by phase type inpatient setting... 44 Figure 17 Total RUG-ADL at beginning of phase by phase type community setting... 45 Figure 18 Profile of SAS and PCPSS by phase type for Queensland Services inpatient setting... Figure 19 Profile of SAS and PCPSS by phase type for Queensland Services community setting... 51 Figure Diagram of the PCOC data scoping method... 52 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report iv
Introduction The Palliative Care Outcomes Collaboration (PCOC) assists services to improve the quality of the palliative care they provide through the analysis and benchmarking of patient outcomes. In this patient outcome report, data submitted for the July to December 16 period are summarised and patient outcomes benchmarked. The purpose of benchmarking is to drive palliative care service innovation and provide participating services with the opportunity to compare their service nationally. Patient outcomes are reported for a total of,89 patients, with 25,3 episodes of care and,36 palliative care phases. The information included in this report is determined by a data scoping method. See Appendix A for more information on the data included in this report. Throughout this report, patient information for Queensland services is presented alongside the national figures for comparative purposes. The national figures are based on information submitted by 113 services, of which: 82 are inpatient services. services include patients who have been seen in designated palliative care beds as well as non-designated bed consultations. 31 are community services. These services include primarily patients seen in the community as well as some patients with ambulatory/clinic episodes. The Queensland figures in this report are based on information submitted by services. A list of these services is presented in Table 1 on the following page. A full list of the services included in the national figures can be found at www.pcoc.org.au. Interpretation hint: Some tables throughout this report may be incomplete. This is because some items may not be applicable to Queensland services or it may be due to data quality issues. Please use the following key when interpreting the tables: na u s The item is not applicable. The item was unavailable. The item was suppressed due to insufficient data as there was less than observations. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 1
Table 1 List of Queensland services included in this report Service name Bundaberg Palliative Access Caloundra Hospital Gold Coast University Hospital Consultation Service Gordonvale Hospital Gordonvale Hospital Hervey Bay and Fraser Coast Palliative Care Service Hopewell Hospice Ipswich Hospice Ipswich Hospital Karuna Hospice Services Mater Private Brisbane Mater Private Mackay Mt Isa and Surrounds Palliative Care Palliative Care Service Chermside Redcliffe Hospital Palliative Care Unit Robina Hospital Consultation Service Robina Hospital Supportive & Specialist Palliative Care Robina Hospital Supportive & Specialist Palliative Care Rockhampton Base Hospital Rockhampton Base Hospital Royal Brisbane and Women s Hospital, Palliative Care Consultation-Liaison Service St Vincent s Hospital Brisbane St Vincent s Hospital Brisbane Sunshine Coast Palliative Care Service - Consult Liaison Sunshine Coast Palliative Care Service - Toowoomba Hospital Oncology Unit Townsville Hospital Consultation Townsville Palliative Care Centre Wesley Private Wynnum Hospital Setting of care Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 2
Section 1 Benchmark summary for Queensland Services Table 2 Summary of outcome measures by setting Description Outcome measure 1 timely admission to service Benchmark % BM Met? % BM Met? Patients episode commences on the day of, or the day after date ready for care (BM1) % 99. Yes 93.5 Yes Outcome measure 2 responsiveness to urgent needs Patients in the unstable phase for 3 days or less (BM2) % 87.4 No 75.9 No Outcome measure 3 change in symptoms and problems Pain Absent or mild pain, remaining absent or mild (PCPSS, BM3.1) % 91.9 Yes 78.5 No (clinician rated) Moderate or severe pain, becoming absent or mild pain (PCPSS, BM3.2) % 63.4 Yes 54.2 No Pain Absent or mild distress from pain, remaining absent or mild (SAS, BM3.3) % 91.7 Yes 78.2 No (patient rated) Moderate or severe distress from pain, becoming absent or mild (SAS, BM3.4) % 56.3 No.6 No Fatigue Absent or mild distress from fatigue, remaining absent or mild (SAS, BM3.5) % 89.2 No 75. No (patient rated) Moderate or severe distress from fatigue, becoming absent or mild (SAS, BM3.6) % 43.7 No 32.1 No Breathing problems Absent or mild distress from breathing problems, remaining absent or mild (SAS, BM3.7) % 95.5 Yes.9 Yes (patient rated) Moderate or severe distress from breathing problems, becoming absent or mild (SAS, BM3.8) % 46. No.9 No Family / carer problems Absent or mild family / carer problems, remaining absent or mild (PCPSS, BM3.9) % 91.8 Yes 78.2 No (clinician rated) Moderate or severe family / carer problems, becoming absent or mild (PCPSS, BM3.) % 45.9 No.2 No Outcome measure 4 case-mix adjusted outcomes (X-CAS) Benchmark Score BM Met? Score BM Met? Clinician rated (PCPSS) Patient rated (SAS) Pain (BM4.1)..13 Yes -.19 No Other symptoms (BM4.2)..27 Yes -.12 No Family / carer (BM4.3)..15 Yes -.11 No Psychological / spiritual (BM4.4)..18 Yes -.3 No Pain (BM4.5)..42 Yes -. No Nausea (BM4.6)..25 Yes -. No Breathing problems (BM4.7)..38 Yes -.11 No Bowel problems (BM4.8)..29 Yes -.26 No Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 3
Section 2 Outcome measures in detail 2.1 Outcome measure 1 Time from date ready for care to episode start Time from date ready for care to episode start reports responsiveness of palliative care services to patient needs. This benchmark was set following feedback and subsequent consultation with PCOC participants. Service providers acknowledge that, whilst there is wide variation in the delivery of palliative care across the country, access to palliative care should be measured based on patient need rather than service availability. As a result, services operating five days a week (Monday to Friday) are not distinguished from services operating seven days a week (all services are being benchmarked together). Benchmark 1: This measure relates to the time taken for an episode to commence following the date the patient is available and ready to receive palliative care. To meet the benchmark for this measure, at least % of patients must have their episode commence on the day of, or the day following date ready for care. Table 3 Time from date ready for care to episode start by setting Time (in days) Queensland Services Queensland Services N % N % N % N % Same day 3842 94.6 12,343 92.5 742.4 7,781 83.9 Following day 179 4.4 663 5. 26 3.2 2 4.3 2-7 days 37.9 8 2.3 35 4.3 751 8.1 8-14 days 2. 26.2 14 1.7 4 2.2 Greater than 14 days 2. 8.1 4.5 141 1.5 Average 1. na 1.1 na 1.4 na 1.9 na Median 1 na 1 na 1 na 1 na Note: Only episodes that started in this reporting period have been included in the table. Episodes where date ready for care was not recorded are excluded from the table. In addition, all records where time from date ready for care to episode start was greater than days were considered to be atypical and were assumed to equal days for the purpose of calculating the average and median time. Interpretation hint: Outcome measure 1 only includes episodes that have commenced in the reporting period. As a result, the number of episodes included in the calculation of this benchmark may not match the number of episodes in Appendix A. For more information on data scoping methods, see Appendix C. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 4
Figure 1 Time from date ready for care to episode start, Queensland services compared to all services (BM1) Timely admission to service Benchmark 1 % of patients care starts the day of or the day after the date ready for care Services ordered from highest to lowest score a. National benchmark profile for BM1 b. over time profile for BM1 Key: National Profile Benchmark Queensland inpatient services Queensland community services National over time Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 5
2.2 Outcome measure 2 Time in unstable phase The unstable phase type, by nature of its definition, alerts clinical staff to the need for urgent changes to the patient s plan of care or that emergency intervention is required. Those patients assessed to be in the unstable phase require intense review for a short period of time. An unstable phase is triggered if: a patient experiences a new, unanticipated problem, and / or a patient experiences a rapid increase in the severity of an existing problem, and / or a patient s family / carers experience a sudden change in circumstances that adversely impacts the patient s care. The patient moves out of the unstable phase in one of two ways: A new plan of care has been put in place, has been reviewed and does not require any additional changes. This does not necessarily mean that the symptom / crisis has been fully resolved. However, the clinical team will have a clear diagnosis and a plan for the patient s care. In this situation, the patient will move to either the stable or deteriorating phase. The patient is likely to die within a matter of days. In this situation, the patient will be moved into the terminal phase. Benchmark 2: This benchmark relates to the time that a patient spends in the unstable phase. To meet this benchmark, at least % of unstable phases must last for 3 days or less. Table 4 Time in unstable phase by setting Time in unstable phase Queensland Services Queensland Services N % N % N % N % Same day 4.5 349 4.8 39 17.7 7 25.4 1 day 8 47.6 3,672.4 71 32.3 1,8 38.8 2 days 445 24.9 1,799 24.7 13.6 346 11.1 3 days 187.5 742.2 27 12.3 214 6.9 4-5 days 138 7.7 453 6.2 21 9.5 181 5.8 6-7 days 42 2.4 144 2. 14 6.4 1 4.5 8-14 days 34 1.9 99 1.4 3 1.4 128 4.1 Greater than 14 days 11.6 23.3 15 6.8 7 3.4 Total 1,787. 7,281. 2. 3,114. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 6
Figure 2 Time in unstable phase, Queensland services compared to all services (BM2) Responsiveness to urgent needs Benchmark 2 % of unstable phases 3 days or less Services ordered from highest to lowest score a. National benchmark profile for BM2 b. over time profile for BM2 Key: National Profile Benchmark Queensland inpatient services Queensland community services National over time Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 7
2.3 Outcome measure 3 Change in pain The Palliative Care Problem Severity Score (PCPSS) and Symptom Assessment Scale (SAS) provide two different perspectives of pain. The PCPSS is clinician rated and measures the severity of pain as a clinical problem while the SAS is patient rated and measures distress caused by pain. There are two benchmarks related to each tool: one relating to patients with an absent or mild score, and the other relating to patients with a moderate or severe score. Phase records must have valid start and end scores for the PCPSS and / or SAS clinical assessment tools to be included in the benchmarks. Scores for PCPSS absent 1 mild 2 moderate 3 severe Scores for SAS = absent distress 1-3 = mild distress 4-7 = moderate distress 8- = severe distress Interpretation hint: This outcome measure should be viewed in conjunction with Table 33 to Table 36 and Appendix B. Benchmark 3.1: Benchmark 3.2: Benchmark 3.3: Benchmark 3.4: This benchmark relates to patients who have absent or mild pain at the start of their phase of palliative care, as rated via the PCPSS clinical tool. To meet this benchmark, % of these phases must end with the patient still experiencing only absent or mild pain. This benchmark relates to patients who have moderate or severe pain at the start of their phase of palliative care, as rated via the PCPSS clinical tool. To meet this benchmark, % of these phases must end with the patient s pain reduced to being absent or mild. This benchmark relates to patients who have absent or mild distress from pain at the start of their phase of palliative care, as rated via the SAS clinical tool. To meet this benchmark, % of these phases must end with the patient still experiencing only absent or mild distress from pain. This benchmark relates to patients who have moderate or severe distress from pain at the start of their phase of palliative care, as rated via the SAS clinical tool. To meet this benchmark, % of these phases must end with the patient s distress from pain reduced to absent or mild. Table 5 Summary of outcome measure 3 change in pain Benchmarks: change in pain Queensland Services Queensland Services N* % N* % N* % N* % Benchmark 3.1: PCPSS (severity) 4,184 91.9 19,685 91.5 738 78.5 15,568 86.4 Benchmark 3.2: PCPSS (severity) 1,683 63.4 5,353 63.1 225 54.2 3,268 58.6 Benchmark 3.3: SAS (distress) 3,4 91.7 16,871.3 688 78.2 15,266 83.2 Benchmark 3.4: SAS (distress) 1,792 56.3 6,454 57.2 265.6 4,235 56.4 *Total number of phases included in this benchmark. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 8
Figure 3 Clinician rated change in pain, Queensland services compared to all services (PCPSS, BM3.1 and 3.2) Management of pain Benchmark 3.1 (PCPSS) % with absent or mild pain, remaining absent or mild Services ordered from highest to lowest score a. National benchmark profile for BM3.1 b. over time profile for BM3.1 Management of pain Benchmark 3.2 (PCPSS) % with moderate or severe pain, becoming absent or mild Services ordered from highest to lowest score c. National benchmark profile for BM3.2 d. over time profile for BM3.2 Key: National Profile Benchmark Queensland inpatient services Queensland community services National over time Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 9
Figure 4 Patient rated change in pain, Queensland services compared to all services (SAS, BM3.3 and 3.4) Management of pain Benchmark 3.3 (SAS) % with absent or mild pain, remaining absent or mild Services ordered from highest to lowest score a. National benchmark profile for BM3.3 b. over time profile for BM3.3 Management of pain Benchmark 3.4 (SAS) % with moderate or severe pain, becoming absent or mild Services ordered from highest to lowest score c. National benchmark profile for BM3.4 d. over time profile for BM3.4 Key: National Profile Benchmark Queensland inpatient services Queensland community services National over time Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report
2.4 Outcome measure 3 Change in distress from fatigue Fatigue is the most common symptom reported to PCOC via the SAS tool. In 15, PCOC introduced this outcome measure to routine reporting. The change in distress from fatigue is measured from the start of a phase to the end of the same phase. There are two benchmarks associated with this outcome measure: one relating to patients with an absent or mild score, and the other relating to patients with a moderate or severe score. Phase records must have valid start and end scores for it to be included in the benchmarks. Benchmark 3.5: Benchmark 3.6: This benchmark relates to patients who have absent or mild distress from fatigue at the start of their phase of palliative care. To meet this benchmark, % of these phases must end with the patient still experiencing only absent or mild distress from fatigue. This benchmark relates to patients who have moderate or severe distress from fatigue at the start of their phase of palliative care. To meet this benchmark, % of these phases must end with the patient s distress from fatigue reduced to absent or mild. Table 6 Summary of outcome measure 3 distress from fatigue Benchmark: Queensland Services Queensland Services change in distress from fatigue N* % N* % N* % N* % absent or mild fatigue, remaining absent or mild (BM3.5) 2,793 89.2 14,762 88.1 8 75. 9, 72. moderate or severe fatigue, becoming absent or mild (BM3.6) 2,432 43.7 8,537 49.3 442 32.1 8,927 33. *Total number of phases included in this benchmark. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 11
Figure 5 Patient rated change in fatigue, Queensland services compared to all services (SAS, BM3.5 and 3.6) Management of fatigue Benchmark 3.5 % with absent or mild fatigue, remaining absent or mild Services ordered from highest to lowest score a. National benchmark profile for BM3.5 b. over time profile for BM3.5 Management of fatigue Benchmark 3.6 % with moderate or severe fatigue, becoming absent or mild Services ordered from highest to lowest score c. National benchmark profile for BM3.6 d. over time profile for BM3.6 Key: National Profile Benchmark Queensland inpatient services Queensland community services National over time Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 12
2.5 Outcome measure 3 Change in distress from breathing problems Breathing problems is a common symptom reported by patients in palliative care. In 15, PCOC introduced this outcome measure to routine reporting. The change in distress from breathing problems is measured from the start of a phase to the end of the same phase. There are two benchmarks associated with this outcome measure: one relating to patients with an absent or mild score, and the other relating to patients with a moderate or severe score. Phase records must have valid start and end scores for it to be included in the benchmarks. Benchmark 3.7: Benchmark 3.8: This benchmark relates to patients who have absent or mild distress from breathing problems at the start of their phase of palliative care. To meet this benchmark, % of these phases must end with the patient still experiencing only absent or mild distress from breathing problems. This benchmark relates to patients who have moderate or severe distress from breathing problems at the start of their phase of palliative care. To meet this benchmark, % of these phases must end with the patient s distress from breathing problems reduced to absent or mild. Table 7 Summary of outcome measure 3 distress from breathing problems Benchmark: change in distress from breathing Queensland Services Queensland Services problems N* % N* % N* % N* % absent or mild breathing problems, remaining absent or mild (BM3.7) 3,974 95.5 19,6 94.7 782.9 15,416 91.8 moderate or severe breathing problems, becoming absent or mild (BM3.8) 1,2 46. 4,313 48.3 165.9 2,9.3 *Total number of phases included in this benchmark. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 13
Figure 6 Patient rated change in breathing problems, Queensland services compared to all services (SAS, BM3.7 and 3.8) Management of breathing problems Benchmark 3.7 % with absent or mild breathing problems, remaining absent or mild Services ordered from highest to lowest score a. National benchmark profile for BM3.7 b. over time profile for BM3.7 Management of breathing problems Benchmark 3.8 % with moderate or severe breathing problems, becoming absent or mild Services ordered from highest to lowest score c. National benchmark profile for BM3.8 d. over time profile for BM3.8 Key: National Profile Benchmark Queensland inpatient services Queensland community services National over time Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 14
2.6 Outcome measure 3 Change in family / carer problems Palliative care is a holistic discipline which considers the needs of the patients and their family and carers. The PCPSS family / carer domain measures problems associated with a patient s condition or palliative care needs. In 15, PCOC introduced this outcome measure to routine reporting. The change in family / carer problems is measured from the start of a phase to the end of the same phase. There are two benchmarks associated with this outcome measure: one relating to patients with an absent or mild score, and the other relating to patients with a moderate or severe score. Phase records must have valid start and end scores for it to be included in the benchmarks. Benchmark 3.9: Benchmark 3.: This benchmark relates to patients who have absent or mild family / carer problems at the start of their phase of palliative care. To meet this benchmark, % of these phases must end with the patient still experiencing only absent or mild family / carer problems. This benchmark relates to patients who have moderate or severe family / carer problems at the start of their phase of palliative care. To meet this benchmark, % of these phases must end with the patient s family / carer problems reduced to absent or mild. Table 8 Summary of outcome measure 3 family / carer problems Benchmark: Queensland Services Queensland Services change in family / carer problems N* % N* % N* % N* % absent or mild family / carer problems, remaining absent or mild (BM3.9) 4,9 91.8,47 92.1 6 78.2 14,293 83. moderate or severe family / carer problems, becoming absent or mild (BM3.) 1,347 45.9 4,153 49.7 239.2 3,829 48.3 *Total number of phases included in this benchmark. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 15
Figure 7 Clinician rated change in family / carer problems, Queensland services compared to all services (PCPSS, BM3.9 and 3.) Management of family / carer problems Benchmark 3.9 % with absent or mild family / carer problems, remaining absent or mild Services ordered from highest to lowest score a. National benchmark profile for BM3.9 b. over time profile for BM3.9 Management of family / carer problems Benchmark 3. % with moderate or severe family / carer problems, becoming absent or mild Services ordered from highest to lowest score c. National benchmark profile for BM3. d. over time profile for BM3. Key: National Profile Benchmark Queensland inpatient services Queensland community services National over time Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 16
2.7 Outcome measure 4 Change in symptoms relative to the baseline national average (X-CAS) Outcome measure 4 includes a suite of case-mix adjusted scores used to compare the change in symptoms for similar patients i.e. patients in the same phase who started with the same level of symptom. Eight symptoms are included in this report and the baseline reference period is January to June 14. The suite of benchmarks included in outcome measure 4 are generally referred to as X-CAS CAS standing for Case-mix Adjusted Score, and the X to represent that multiple symptoms are included. As X-CAS looks at change in symptom, they are only able to be calculated on phases which ended in phase change or discharge (as the phase end scores are required to determine the change). Table 9 Summary of outcome measure 4 inpatient setting Queensland Services Clinical Tool Benchmark: Symptom N phases N phases at % phases at N phases N phases at % phases at X-CAS included in or above the or above the X-CAS included in or above the or above the measure baseline baseline measure baseline baseline PCPSS 4.1: Pain.13 5,867 3,774 64.3.12 25,38 16,2 64.7 (severity) 4.2: Other symptoms.27 5,873 4,4 76.5.22 24,624 18,287 74.3 4.3: Family / carer.15 5,656 3, 69..16 24, 16,952. 4.4: Psychological / spiritual.18 5,893 3,612 61.3.18 25,64 15,8 63.3 SAS 4.5: Pain.42 5,222 3,5.9.36 23,325 16,259 69.7 (distress) 4.6: Nausea.25 5,182 4,493 86.7.21 23,269,669 88.8 4.7: Breathing problems.38 5,214 4,76 78.2.31 23,319 18,558 79.6 4.8: Bowel problems.29 5,7 4,5 76.9.27 23,264 18,6.1 Interpretation hint: The X-CAS measures are calculated relative to a baseline reference period (currently January to June 14). As a result: If X-CAS is greater than then on average, change in symptom was better than similar patients in the baseline reference period. If X-CAS is equal to then on average, change in symptom was about the same as similar patients in the baseline reference period. If X-CAS is less than then on average, change in symptom was worse than similar patients in the baseline reference period. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 17
Table Summary of outcome measure 4 community setting Queensland Services Clinical Tool Benchmark: Symptom N phases N phases at % phases at N phases N phases at % phases at X-CAS included in or above the or above the X-CAS included in or above the or above the measure baseline baseline measure baseline baseline PCPSS 4.1: Pain -.19 963 456 47.4 -.3 18,836,2 54.5 (severity) 4.2: Other symptoms -.12 954 545 57.1 -.1 18,185 11,723 64.5 4.3: Family / carer -.11 9 5 57.2.1 18,122 11,664 64.4 4.4: Psychological / spiritual -.3 9 481 51.7.1 18,552 9,364.5 SAS 4.5: Pain -. 953 1 52.6 -.13 19,1 11,5 59.2 (distress) 4.6: Nausea -. 951 727 76.4 -.6 18,647 15,45.7 4.7: Breathing problems -.11 947 661 69.8 -.1 18,325 12,4 68.1 4.8: Bowel problems -.26 944 612 64.8.4 18,99 13,1 74. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 18
X-CAS X-CAS Figure 8 Trends in outcome measure 4: Palliative Care Problem Severity Score (PCPSS) inpatient setting.4.2.4.2.. -.2 -.4 Queensland Services -.2 -.4 a. Pain (BM 4.1) b. Other symptoms (BM4.2) c. Family / carer (BM4.3) d. Psychological / spiritual (BM4.4) Figure 9 Trends in outcome measure 4: Palliative Care Problem Severity Score (PCPSS) community setting.4.2 Queensland Services.4.2. -.2 -.4. -.2 -.4 a. Pain (BM 4.1) b. Other symptoms (BM4.2) c. Family / carer (BM4.3) d. Psychological / spiritual (BM4.4) Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 19
X-CAS X-CAS Figure Trends in outcome measure 4: Symptom Assessment Scale (SAS) inpatient setting 1..5 Queensland Services 1..5.. -.5 -.5-1. -1. a. Pain (BM 4.5) b. Nausea (BM 4.6) c. Breathing problems (BM 4.7) d. Bowel problems (BM 4.8) Figure 11 Trends in outcome measure 4: Symptom Assessment Scale (SAS) community setting 1..5 Queensland Services 1..5.. -.5 -.5-1. -1. a. Pain (BM 4.5) b. Nausea (BM 4.6) c. Breathing problems (BM 4.7) d. Bowel problems (BM 4.8) Note: Only services with or more valid assessments are included in the above graphs. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report
Section 3 Descriptive analysis This section provides descriptive information of the data submitted by Queensland services at each of the three levels patient, episode and phase. Patient level information describes demographics such as Indigenous status, sex, preferred language and country of birth. This information about the patient provides a context to the episode and phase level information and enhances the meaningfulness of patient outcomes. Episode level information describes the setting of palliative care service provision. It also includes information relating to the facility or organisation that has referred the patient, how an episode starts and ends, and the setting in which the patient died. Phase level information describes the clinical condition of the patient during the episode, using five clinical assessment tools. These are phase of illness, the patient s functional status and performance, pain and other common symptoms, the patient s psychological / spiritual and family / carer domain. Summaries of the national data are included for comparative purposes. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 21
3.1 Profile of palliative care patients 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 and carers are included in this definition if interventions relating to them are recorded in the patient medical record. Table 11 shows the Indigenous status for the patients in Queensland services and nationally. Table 11 Indigenous status Indigenous status Queensland Services N % N % Aboriginal but not Torres Strait Islander origin 57 1.5 243 1.2 Torres Strait Islander but not Aboriginal origin 8.2 15.1 Both Aboriginal and Torres Strait Islander origin 8.2 22.1 Neither Aboriginal nor Torres Strait Islander origin 3,761 97. 19,427 96.7 Not stated / inadequately described 42 1.1 382 1.9 Total 3,876.,89. Table 12 shows the breakdown of deaths for the patients in Queensland services and nationally for the reporting period. All inpatient deaths are reported in the hospital category while the community deaths are reported in the private residence and residential aged care facility categories. Table 12 Place of death Place of death Queensland Services N % N % Private residence 166 8. 1,2 17.6 Residential aged care facility 11.5 585 5.7 Hospital 1,898 91.4 7,788 76.3 Not stated / inadequately described 1. 37.4 Total 2,76.,212. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 22
The following two tables show the country of birth and the preferred language respectively for the patients in Queensland services and nationally. To allow for comparison with the broader Australian community the list of country of birth in Table 13 is in descending order of the most frequent country of birth according to the 11 Census (e.g. India was the fifth most common country of birth in the 11 Census). The same approach has been taken with Table 14 (e.g. Italian was the fifth most frequently spoken language in the 11 census). All other countries and languages have been grouped together to form the categories All other countries and All other languages respectively. Table 13 Country of birth Country of birth Queensland Services N % N % Australia 2,954 76.2 12,143.4 England 236 6.1 1,398 7. New Zealand 1 3.6 349 1.7 China (excludes SARs and Taiwan) 13.3 216 1.1 India 16.4 136.7 Italy 48 1.2 834 4.2 Vietnam 9.2 174.9 Philippines 9.2 98.5 South Africa 15.4 3.5 Scotland 46 1.2 2 1.4 Malaysia 2.1 68.3 Germany 42 1.1 281 1.4 Greece 15.4 436 2.2 Sri Lanka.3 65.3 United States of America 18.5 67.3 All other countries 285 7.4 3,115 15.5 Not stated / inadequately described 18.5 316 1.6 Total 3,876.,89. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 23
Table 14 Preferred language Preferred language Queensland Services N % N % English 3,731 96.3 18,28 89.7 Chinese (a) 6.2 3 1. Hindi (b) 1..1 Arabic (c). 139.7 Italian 19.5 418 2.1 Vietnamese (d). 97.5 Greek 7.2 2 1.3 Filipino / Indonesian (e) 1. 18.1 Macedonian / Croatian (f). 162.8 Spanish (g) 2.1 51.3 Tamil / Malayalam (h). 4. German (i) 8.2 31.2 Korean 3.1 17.1 Samoan / Tongan (j) 1. 18.1 African languages (k) 3.1 13.1 All other languages 25.6 372 1.9 Not stated / inadequately described 69 1.8 218 1.1 Total 3,876.,89. Also includes (a) Cantonese, Hakka, Mandarin, Wu and Min Nan (b) Bengali, Gujarati, Konkani, Marathi, Nepali, Punjabi, Sindhi, Sinhalese, Urdu, Assamese, Dhivehi, Kashmiri, Oriya, and Fijian Hindustani (c) Hebrew, Assyrian Neo-Aramaic, Chaldean Neo-Aramaic, and Mandaean (Mandaic) (d) Khmer and Mon (e) Bisaya, Cebuano, IIokano, Malay, Tetum, Timorese, Tagalog, Acehnese, Balinese, Bikol, Iban, Ilonggo, Javanese, and Pampangan (f) Bosnian, Bulgarian, Serbian, and Slovene (g) Catalan and Portuguese (h) Kannada, Telugu, and Tulu (i) Letzeburgish and Yiddish (j) Fijian, Gilbertese, Maori, Nauruan, Niue, Rotuman, Tokelauan, Tuvaluan, and Yapese (k) Acholi, Akan, Mauritian Creole, Oromo, Shona, Somali, Swahili, Yoruba, Zulu, Amharic, Bemba, Dinka, Ewe, Ga, Harari, Hausa, Igbo, Kikuyu, Krio, Luganda, Luo, Ndebele, Nuer, Nyanja (Chichewa), Shilluk, Tigré, Tigrinya, Tswana, Xhosa, Seychelles Creole, Anuak, Bari, Bassa, Dan (Gio-Dan), Fulfulde, Kinyarwanda (Rwanda), Kirundi (Rundi), Kpelle, Krahn, Liberian (Liberian English), Loma (Lorma), Lumun (Kuku Lumun), Madi, Mandinka, Mann, Moro (Nuba Moro) and Themne Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 24
Table 15 and Table 16 present a breakdown of malignant and non-malignant diagnosis for the patients in Queensland services and at the national level. The primary diagnosis is the principal life limiting illness responsible for the patient requiring palliative care. The primary diagnosis was not stated for 11 (.3%) patients in Queensland services and was not stated for 95 (.5%) patients nationally. Table 15 Primary diagnosis - malignant Queensland Services Primary diagnosis % malignant % malignant N % all diagnosis N diagnosis diagnosis % all diagnosis Bone and soft tissue 38 1.3 1. 2 1.6 1.2 Breast 9 7.1 5.4 1,222 8.2 6.1 CNS 54 1.8 1.4 3 2.6 1.9 Colorectal 334 11.3 8.6 1,6 11.3 8.4 Other GIT 231 7.8 6. 1,382 9.2 6.9 Haematological 9 7.1 5.4 979 6.5 4.9 Head and neck 167 5.7 4.3 723 4.8 3.6 Lung 6 22.1 16.8 3,183 21.3 15.8 Pancreas 177 6. 4.6 1,43 7. 5.2 Prostate 7 7. 5.3 1,1 6.7 5. Other urological 129 4.4 3.3 639 4.3 3.2 Gynaecological 155 5.3 4. 754 5. 3.8 Skin 134 4.6 3.5 526 3.5 2.6 Unknown primary 3.4 2.6 388 2.6 1.9 Other primary malignancy 123 4.2 3.2 634 4.2 3.2 Malignant not further defined 27.9.7 171 1.1.9 All malignant 2,944. 76. 14,965. 74.5 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 25
Table 16 Primary diagnosis - non-malignant Queensland Services Primary diagnosis % non-malignant % non-malignant N % all diagnosis N diagnosis diagnosis % all diagnosis Cardiovascular disease 162 17.6 4.2 783 15.6 3.9 HIV / AIDS.... End stage kidney disease 7 11.6 2.8 464 9.2 2.3 Stroke 86 9.3 2.2 313 6.2 1.6 Motor neurone disease 38 4.1 1. 2 4.2 1. Alzheimer s dementia 15 1.6.4 181 3.6.9 Other dementia 37 4. 1. 5 6.1 1.5 Other neurological disease 34 3.7.9 274 5.4 1.4 Respiratory failure 165 17.9 4.3 988 19.6 4.9 End stage liver disease 61 6.6 1.6 233 4.6 1.2 Diabetes and its complications 1.1.3 29.6.1 Sepsis 45 4.9 1.2 232 4.6 1.2 Multiple organ failure 23 2.5.6 115 2.3.6 Other non-malignancy 128 13.9 3.3 751 14.9 3.7 Non-malignant not further defined 1.1.3 151 3..8 All non-malignant 921. 23.8 5,29. 25. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 26
3.2 Profile of palliative care episodes 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 for the purposes of this report, either as an inpatient or community patient. An episode of palliative care starts on the date when the comprehensive palliative care assessment is undertaken and documented using the five clinical assessment tools. An episode of palliative care ends when: the patient is formally separated from the current setting of care (e.g. from community to inpatient) or the patient dies or the principal clinical intent of the care changes and the patient is no longer receiving palliative care. Table 17 below presents the number and percentage of episodes by age group and sex for the patients seen by Queensland services and at the national level. Age has been calculated as at the beginning of each episode. Table 17 Age group by sex Age group Queensland Services Male Female Male Female N % N % N % N % < 15 8.3 1..3 23.2 15-24 5.2 11.5 24.2 37.3 25-34 29 1.1 33 1.4 7.8 142 1.2 35-44 48 1.8 78 3.4 283 2.1 1 3.3 45-54 181 6.6 1 8.2 9 6.1 934 7.8 55-64 486 17.8 414 17.8 2,63 15.5 1,841 15.4 65-74 798 29.2 613 26.4 3,494 26.2 2,811 23.4 75-84 716 26.2 552 23.7 3,8 29.2 3,95 25.8 85+ 463 16.9 434 18.7 2,615 19.6 2,5 22.6 Not stated / inadequately described.... Total 2,734. 2,326. 13,325. 11,989. Note: Records where sex was not stated or inadequately described are excluded from the table. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 27
Referral source refers to the facility or organisation from which the patient was referred for each episode of care. Table 18 presents referral source by setting. Table 18 Referral source by setting Referral source Queensland Services Queensland Services N % N % N % N % Public hospital 2,734 65.9 8,6.9 524 57.3 5,835 52.6 Private hospital 4 11.1 1,87 7.6 2 24.1 1,434 12.9 Outpatient clinic 1.4 123.9 1.1 8 1. General medical practitioner 39.9 369 2.6 94.3 1,815 16.4 Specialist medical practitioner 1. 563 4. 25 2.7 7 6.5 -based palliative care agency 631 15.2 3,8 21.2 1.1 69.6 -based service 26.6 65.5 7.8.9 Residential aged care facility 19.5 54.4 1.1 474 4.3 Self, carer(s), family or friends 1.7 161 1.1 19 2.1 265 2.4 Other 1.4 5.7 12 1.3 274 2.5 Not stated / inadequately described 12.3 26.2 1.1 5. Total 4,151. 14,221. 914. 11,99. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 28
Table 19 provides a summary of the time between referral to first contact by setting of care. The time from referral to first contact is calculated as the time from the date of referral received to either the date of first contact (if provided) or the episode start date. Table 19 Referral to first contact by setting Time (in days) Queensland Services Queensland Services N % N % N % N % Same day or following day 4,23 97.1 13,482 95. 389 42.6 5,2 47.7 2-7 days 91 2.2 5 4.3 3 41.6 3,924 35.4 8-14 days 9.2 64.5 89 9.7 1, 9.4 Greater than 14 days 19.5 47.3 55 6. 836 7.5 Average 1.1 na 1.1 na 3.1 na 3.1 na Median 1 na 1 na 2 na 2 na Note: Episodes where referral date was not recorded are excluded from the table. In addition, all records where time from referral to first contact was greater than days were considered to be atypical and were assumed to equal days for the purpose of calculating the average and median time. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 29
Table gives a summary of the length of episode for patients in Queensland services and nationally. Table 21 details the length of episode by setting. The length of episode is calculated as the number of days between the episode start date and the episode end date. Bereavement phases are excluded from the calculation and episodes that remain open at the end of the reporting period (and hence do not have an episode end date) are also excluded. Table Length of episode (in days) summary by setting Length of episode Queensland Services Queensland Services Average length of episode 7.9.3 42.4 37.8 Median length of episode 5. 6. 31. 24. Note: Records where length of episode was greater than 1 days were considered to be atypical and are excluded from the average calculations. Only episodes ending during the reporting period are included. Table 21 Length of episode (in days) by setting Length of episode Queensland Services Queensland Services N % N % N % N % Same day 348 8.5 8 6.3 14 1.6 271 2.7 1-2 days 984 24.1 2,9.9 41 4.8 695 7. 3-4 days 685 16.8 2, 14.5 35 4.1 557 5.6 5-7 days 7 19.1 2,422 17.2 61 7.1 796 8.1 8-14 days 7 17.9 2,748 19.6 8 12.6 1,352 13.7 15-21 days 272 6.7 1,285 9.2 89.4 996.1 22- days 134 3.3 7 5.6 76 8.9 852 8.6 31- days 7 2.6 756 5.4 146 17.1 1,651 16.7 61- days 24.6 133.9 67 7.8 844 8.5 Greater than days 13.3 59.4 219 25.6 1,861 18.8 Total 4,77. 14,43. 856. 9,875. Note: Only episodes ending during the reporting period are included. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report
Table 22 How episodes start inpatient setting Episode start mode Queensland Services N % N % Admitted from community* 2,745 66.1 8,213 57.8 Admitted from another hospital 662 15.9 3,2 23.1 Admitted from acute care in another ward 8 14.6 2,3 16.7 Change from acute care to palliative care same ward 66 1.6 2 1.5 Other** 68 1.6 113.8 Not stated / inadequately described 2. 35.2 Total 4,151. 14,221. * includes: admitted from usual accommodation, admitted from other than usual accommodation. ** includes: change of sub-acute/non-acute care type and other categories. Table 23 How episodes end inpatient setting Episode end mode Queensland Services N % N % Discharged to community* 1,621 39.8 4, 33.5 Discharged to another hospital 345 8.5 859 6.1 Death 1,898 46.6 7,788 55.5 Change from palliative care to acute care** 17.4 66.5 Change in sub-acute care type 23.6 64.5 End of consultative episode inpatient episode ongoing 156 3.8 4 2.9 Other 12.3 97.7 Not stated / inadequately described 5.1 59.4 Total 4,77. 14,43. Note: Only episodes ending during the reporting period are included. * includes: discharged to usual accommodation, discharged to other than usual accommodation. ** includes: change from palliative care to acute care different ward, change from palliative care to acute care same ward. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 31
Table 24 How episodes start community setting Episode start mode Queensland Services N % N % Admitted from inpatient palliative care 266 29.1 4, 37.8 Other* 646.7 6,895 62.1 Not stated / inadequately described 2.2 4. Total 914. 11,99. *includes: patient was not transferred from being an overnight patient. Table 25 How episodes end community setting Episode end mode Queensland Services N % N % Admitted for inpatient palliative care 385 45. 3,179 32.2 Admitted for inpatient acute care 8 24.3 2,796 28.3 Admitted to another palliative care service 19 2.2 51.5 Admitted to primary health care 38 4.4 276 2.8 Discharged / case closure 17 2. 959 9.7 Death 178.8 2,424 24.5 Other 8.9 67.7 Not stated / inadequately described 3.4 123 1.2 Total 856. 9,875. Note: Only episodes ending during the reporting period are included. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 32
3.3 Profile of palliative care phases 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. The palliative care phase is determined by a holistic clinical assessment which considers the needs of the patients and their family and carers. A patient may move back and forth between the stable, unstable, deteriorating and terminal phase types and these may occur in any sequence. See Appendix E for more information on the definition of palliative care phase. The clinical assessments are assessed daily (or at each visit) and are reported on admission, when the phase changes and at discharge. Table 26 Number of phases by phase type and setting Phase type Queensland Services Queensland Services N % N % N % N % Stable 1,951 23.9 8,668 25.6 645.9 9,591 36.6 Unstable 1,787 21.9 7,281 21.5 2 14. 3,114 11.9 Deteriorating 2,765 33.9,723 31.7 596 37.8 11,464 43.7 Terminal 1,656.3 7,126 21.1 116 7.4 2,69 7.9 Total 8,159. 33,798. 1,577. 26,238. Note: Bereavement phases have been excluded due to inconsistent data collection and bereavement practices. Bereavement phases are not included in the total phases count. Table 27 Average phase length (in days) by phase type and setting Phase type Queensland Services Queensland Services Stable 6.1 7.1 23.9.2 Unstable 2.1 2. 3.9 3. Deteriorating 4.9 4.9 18.5 12.3 Terminal 2. 2.1 3.3 2.9 Note: Phase records where phase length was greater than days were considered to be atypical and are excluded from the average calculations. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 33
Table 28 presents the first phase of the episode, both for Queensland services and nationally. The first phase of episode allows you to understand how patients are entering Queensland services. Table 28 Number and percentage of first phase of episode by setting First phase Queensland Services Queensland Services N % N % N % N % Stable 7 14.9 2,144 15.7 4 52.3 4,1.6 Unstable 1,472 36.2 5,251 38.4 37 4.5 622 6.3 Deteriorating 1,563 38.4 4,738 34.6 341 41.5 4,868 49.4 Terminal 428.5 1,552 11.3 14 1.7 362 3.7 Total 4,. 13,685. 822. 9,853. Note: This table only includes the first phase if the episode has started in the reporting period. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 34
Table 29 presents information relating to the manner in which stable phases ended, both for Queensland services and nationally. A stable phase will end if a patient moves into a different phase (phase change), is discharged or dies. Figure 12 summarises the movement of patients out of the stable phase by setting. This movement from one phase to another is referred to as phase progression and is derived by PCOC. Similar information is presented for the unstable (Table, Figure 13), deteriorating (Table 31, Figure 14) and terminal (Table 32, Figure 15) phases on the following pages. Table 29 How stable phases end by setting How stable phases end Queensland Services Queensland Services N % N % N % N % Patient moved into another phase 679 34.8 4,7.8 349 54.1 6,333 66. Discharge / case closure 1,228 62.9 4,138 47.7 284 44. 3, 31.7 Died 32 1.6 9 1.3 12 1.9 8 2.2 Not stated / inadequately described 12.6 14.2..1 Total 1,951. 8,668. 645. 9,591. Figure 12 Stable phase progression Unstable Deteriorating Terminal Unstable Deteriorating Terminal Queensland Services Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 35
Table How unstable phases end by setting How unstable phases end Queensland Services Queensland Services N % N % N % N % Patient moved into another phase 1,583 88.6 6,736 92.5 146 66.4 2,88 67.1 Discharge / case closure 1 9. 392 5.4 73 33.2 993 31.9 Died 41 2.3 149 2. 1.5 32 1. Not stated / inadequately described 3.2 4.1. 1. Total 1,787. 7,281. 2. 3,114. Figure 13 Unstable phase progression Stable Deteriorating Terminal Stable Deteriorating Terminal Queensland Services Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 36
Table 31 How deteriorating phases end by setting How deteriorating phases end Queensland Services Queensland Services N % N % N % N % Patient moved into another phase 1,777 64.3 8,278 77.2 221 37.1 7,672 66.9 Discharge / case closure 733 26.5 1,534 14.3 9 51.8 3,133 27.3 Died 252 9.1 2 8.4 66 11.1 653 5.7 Not stated / inadequately described 3.1 9.1. 6.1 Total 2,765.,723. 596. 11,464. Figure 14 Deteriorating phase progression Stable Unstable Terminal Stable Unstable Terminal Queensland Services Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 37
Table 32 How terminal phases end by setting How terminal phases end Queensland Services Queensland Services N % N % N % N % Patient moved into another phase 2.4 328 4.6 4 3.4 2 13. Discharge / case closure 37 2.2 1 2.1 8.6 246 11.9 Died 1,579 95.4 6,647 93.3 2 87.9 1,553 75.1 Not stated / inadequately described. 1... Total 1,656. 7,126. 116. 2,69. Figure 15 Terminal phase progression Stable Unstable Deteriorating Stable Unstable Deteriorating Queensland Services Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 38
The Palliative Care Problem Severity Score (PCPSS) is a clinician rated screening tool to assess the overall severity of problems within four key palliative care domains (pain, other symptoms, psychological / spiritual and family / carer). The ratings are: - absent, 1 - mild, 2 - moderate and 3 - severe. Table 33 and Table 34 show the percentage scores for the inpatient and community settings, respectively, for both Queensland services and nationally. Alternative graphical representations of PCPSS profile by phase type can be found in Appendix B. Table 33 Profile of PCPSS at beginning of phase by phase type inpatient setting (percentages) Phase type Queensland Services Problem severity Absent Mild Moderate Severe Absent Mild Moderate Severe Pain 43. 41.3 13.3 2.3. 38.5 9.6 1.9 Stable Other symptoms 33.6 49.2 15.1 2.1 35.1 49.6 13.2 2.1 Psychological / spiritual 43.1 46...9 48.6 43.2 7.1 1.1 Family / carer 47.3.5. 2.1 51.1 39.8 7.5 1.6 Pain 26..6 29.5 14. 32.3 33.5 24.3 9.9 Unstable Other symptoms 17.4 33.4 35.4 13.8 18.4 39.8.4 11.4 Psychological / spiritual 24.5 46. 23.9 5.5 32.5 44.7 18.4 4.4 Family / carer 32.4 38.6 21.2 7.7 36. 41.5 17.5 5. Pain 33.9 39.2.9 6.1 41. 38.5 16.5 4. Deteriorating Other symptoms 17. 43. 32.2 7.7 23.7 45.4 25.1 5.8 Psychological / spiritual 32.4 47. 16.8 3.8 37.8 45.9 13.7 2.6 Family / carer 29.3 42.6 21.8 6.3 35.8 43.9 16.2 4.1 Pain 47.5 35.3 13.3 3.9. 34.3 12.4 3.3 Terminal Other symptoms 43. 34. 17. 6..5 35.8 17.8 5.9 Psychological / spiritual 59.7.5 8. 1.7 58.3.8 8.6 2.2 Family / carer 24.6 42.9 26.4 6.1. 42.1 21.1 6.7 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 39
Table 34 Profile of PCPSS at beginning of phase by phase type community setting (percentages) Phase type Queensland Services Problem severity Absent Mild Moderate Severe Absent Mild Moderate Severe Pain.4 59.8 8.5 1.4 45.9 49.6 4.3.3 Stable Other symptoms 19.3 67.4 12.7.6.7 68.6.4.4 Psychological / spiritual 36.4 53. 9.7.9 35.5 58. 6.1.4 Family / carer 29.3 56.8 13.4.5 35.1 56.3 8.2.4 Pain 17.1.6 35.2 17.1 17.6 31.2 35.1 16.2 Unstable Other symptoms 7.4 36.6 44.4 11.6 6.6 31.9 46.9 14.6 Psychological / spiritual 21. 54.2 22.4 2.3 14.4 49.8 31. 4.8 Family / carer. 42.9 32.2 4.9 12.3 38.1 42.5 7.1 Pain.2 55.6. 4.2.8.6 16.8 1.8 Deteriorating Other symptoms 5.9 49.7 39.2 5.3 9. 54.8 34.2 2.1 Psychological / spiritual 19. 57.9.5 2.6 19.9 61.8 17.2 1.1 Family / carer.3 51.2 31. 7.4 18.7 56.6 22.6 2.1 Pain 32.7 51.3 13.3 2.7 41.1 43.9 13.1 2. Terminal Other symptoms 24.8 37.2 27.4.6 28.7 44.4 22.5 4.4 Psychological / spiritual 44. 39.4 11.9 4.6 47.6 37.9 13.1 1.5 Family / carer 6.1 43.9 36. 14. 13. 47.2 34.7 5.1 The Symptom Assessment Scale (SAS) is a patient rated (or proxy) assessment tool and reports a level of distress using a numerical rating scale from - no distress to - worst possible distress. The SAS reports on distress from seven symptoms, these being difficulty sleeping, appetite problems, nausea, bowel problems, breathing problems, fatigue and pain. It provides a clinical picture of these seven symptoms from the patient s perspective. The SAS scores are grouped in Table 35 and Table 36 on the following pages using the same categories as the PCPSS i.e. absent (), mild (1-3), moderate (4-7) and severe (8-). Alternative graphical representations of the SAS profile by phase type can be found in Appendix B. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report
Table 35 Profile of SAS scores at beginning of phase by phase type inpatient setting (percentages) Phase type Stable Unstable Deteriorating Terminal Queensland Services Symptom distress (Absent) 1-3 (Mild) 4-7 (Moderate) 8- (Severe) (Absent) 1-3 (Mild) 4-7 (Moderate) 8- (Severe) Difficulty sleeping 69.6 19.6 9.6 1.3 77.2 13.7 7.8 1.4 Appetite problems 65. 21.5 11.9 1.7 69.9 18.4.1 1.6 Nausea 79.6 13.9 5.6.8 83.9.7 4.7.7 Bowel problems 61.7 22.8 13. 2.5 69.7 18.9 9.6 1.8 Breathing problems 64..5 13.3 2.2 69.2 18.2.8 1.9 Fatigue 38.4 26.6.1 4.9 43.9 28.3 23.9 3.8 Pain 42.2 34..6 3.1 49.3 32.3 16. 2.4 Difficulty sleeping 55.3 22.2 16.4 6. 63.7 16.7 15.1 4.5 Appetite problems 46.1 25.4.8 7.6 53.9 22.2 18.5 5.4 Nausea 64.1 18.1 12.8 5. 72.4 13..7 3.9 Bowel problems.8 25.4 17.3 6.5 59.9.1 15.1 4.9 Breathing problems 49.9 21.9 18.5 9.7 57.5 18.3 17.5 6.7 Fatigue 27.3 19.9 38.4 14.3 31.6 23.3 33.8 11.3 Pain 25.5 26.9 31.6 16. 33.6 26.6 28.8 11.1 Difficulty sleeping 69.4 16.5 11.5 2.7 75.5 13.4 9.1 1.9 Appetite problems 55.7 22.4 17.5 4.4 63.9 19.8 13. 3.3 Nausea 73.3 14.3.3 2.2 79.7 11.7 7.1 1.5 Bowel problems.8 18.9 16.1 4.2 67.2 18.5 11.7 2.6 Breathing problems 54.6 17.3.7 7.4 61.6 17.7 15.7 4.9 Fatigue 33.2 16.1 37.9 12.8 39.2 21.8. 9. Pain 36.5.2 26.6 6.7 42.5.2 22.5 4.9 Difficulty sleeping 93.4 3.8 1.7 1. 93.2 3.8 2.4.6 Appetite problems 93.5 2.4 2.4 1.6 92.6 3.6 2.4 1.3 Nausea 95.3 2.4 1.5.8 94.3 3.2 1.9.6 Bowel problems.5 4.9 3.3 1.3 88.8 6.3 3.8 1.1 Breathing problems 75.3.7 9.1 4.9 72.6 12.8.4 4.2 Fatigue 84.3 4. 6.1 5.6 79.2 7.5 8.8 4.6 Pain 61.9 22. 12.9 3.3 59.8 24.2 13.4 2.6 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 41
Table 36 Profile of SAS scores at beginning of phase by phase type community setting (percentages) Phase type Stable Unstable Deteriorating Terminal Queensland Services Symptom distress (Absent) 1-3 (Mild) 4-7 (Moderate) 8- (Severe) (Absent) 1-3 (Mild) 4-7 (Moderate) 8- (Severe) Difficulty sleeping 62.1 24.6 12.1 1.3 73.2 21.1 5.4.3 Appetite problems 64. 23.2.3 2.5 57.9 31.9 9.5.7 Nausea 77. 18.1 4.5.3 84.4 13.4 2..2 Bowel problems 62.6 27.9 8.7.8 72.8 21.9 5..4 Breathing problems 61.3 26.1.6 2. 58.8.5..7 Fatigue 25. 38.8.4 5.8 21.5 41.5 34.9 2.1 Pain 33..3 14.5 2.2 47.9 43.2 8.2.6 Difficulty sleeping 45.6 25.6 21.9 7. 51. 25.7 19.4 3.8 Appetite problems 56.7 14.4 21.4 7.4 37.5 31.4 25.4 5.7 Nausea 61.8 18. 14.7 5.5 61.1 17.6 16.8 4.5 Bowel problems 53.5 25.6 16.3 4.7 56.7 24.5 15. 3.9 Breathing problems 54.2 17.6 22.2 6. 48.7 27.5 18.6 5.2 Fatigue 26.7 18.4 38.2 16.6 14.3 27.9 46.1 11.6 Pain 17. 26.6 38.5 17.9 17.7 28.7 36.7 16.9 Difficulty sleeping 45. 37.8 14.3 2.9 64.2 25. 9.9.9 Appetite problems 39.6 35.2 21.2 4. 45.5 34.3 18.2 2.1 Nausea 65.5 26. 7.6.8 74.5 18.9 6.1.6 Bowel problems.6 42.8 15.1 1.5 64. 25.1..9 Breathing problems 43.8 35. 17.4 3.7.3 31.3 16.6 1.8 Fatigue 14.6 27.4 48.1. 15.5 31.5 47.3 5.7 Pain.9 55.1.6 3.4 33.4 43.9.1 2.6 Difficulty sleeping 77.9 14.2 5.3 2.7. 11.2 7.9.8 Appetite problems 85.7 6.3 5.4 2.7 85.8 6.5 4. 3.7 Nausea 83.9 9.8 5.4.9 88. 7.5 4.1.4 Bowel problems 77.7 14.3 8.. 79.9 14.3 5.6.2 Breathing problems 73.9 13.5 9.9 2.7 64.3.2 12.7 2.8 Fatigue 65.2 12.5 14.3 8. 69.1 8.9 13.1 8.9 Pain.2 42.9 14.3 2.7 45. 36.1 17. 1.9 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 42
The Australia-modified Karnofsky Performance Status (AKPS) is a measure of the patient s overall performance status or ability to perform their activities of daily living. It is a single score between and assigned by a clinician based on observations of a patient s ability to perform common tasks relating to activity, work and self-care. Table 37 shows the data for the AKPS at phase start. Table 37 Australia-modified Karnofsky Performance Status (AKPS) at phase start by setting AKPS assessment at phase start Queensland Services Queensland Services N % N % N % N % - Comatose or barely rousable 993 12.2 3,5.4 47 3. 864 3.3 - Totally bedfast and requiring extensive nursing care 1,687.7 8,185 24.2 126 8. 2,591 9.9 - Almost completely bedfast 1,174 14.4 4,629 13.7 115 7.3 1,942 7.4 - In bed more than % of the time 1,546 18.9 6,344 18.8 239 15.2 3,5 13.5 - Requires considerable assistance 1,286 15.8 5,193 15.4 389 24.7 6,431 24.5 - Requires occasional assistance 1,41 12.8 3,431.2 7 25.8 6,2 24. - Cares for self 2 3.4 765 2.3 181 11.5 2,958 11.3 - Normal activity with effort 72.9 244.7 49 3.1 5 1.9 - Able to carry on normal activity; minor signs or symptoms 34.4 67.2.6 97.4 - Normal; no complaints; no evidence of disease 4. 6. 1.1 3. Not stated/inadequately described 42.5 1,429 4.2 13.8 1,27 3.9 Total 8,159. 33,798. 1,577. 26,238. The 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. The RUG-ADL are assessed daily (or at each visit) and are reported on admission, when the phase changes and at discharge. Figure 16 and Figure 17 on the following two pages summarise the total RUG-ADL at the beginning of each phase for inpatients and community patients. The total score on the RUG-ADL ranges from a minimum of 4 (lowest level of functional dependency) to a maximum of 18 (highest level of functional dependency). AKPS & RUG-ADL can be used together to provide a profile of both patient dependency, equipment requirements, need for allied health referrals and carer burden/respite requirements. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 43
Figure 16 Total RUG-ADL at beginning of phase by phase type inpatient setting Stable Phase Unstable Phase Total RUG-ADL at start of phase Total RUG-ADL at start of phase Deteriorating Phase Terminal Phase Total RUG-ADL at start of phase Total RUG-ADL at start of phase Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 44
Figure 17 Total RUG-ADL at beginning of phase by phase type community setting Stable Phase Unstable Phase Total RUG-ADL at start of phase Total RUG-ADL at start of phase Deteriorating Phase Terminal Phase Total RUG-ADL at start of phase Total RUG-ADL at start of phase Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 45
Appendix A Summary of data included in this report A1 Data summary During the reporting period, data were provided for a total of,89 patients who between them had 25,3 episodes of care and,36 palliative care phases. These total numbers are determined by a data scoping method. This method looks at the phase level data first and includes all phases that ended within the current reporting period. The associated episodes and patients are then determined (Appendix C contains a more detailed explanation of this process). Table 38 shows the number of patients, episodes and phases included in this report both for Queensland services and nationally. Table 38 Number and percentage of patients, episodes and phases by setting Queensland Services Total Queensland Services Queensland Services Number of patients* 3,359 12,173 755 8,733 3,876,89 Number of episodes 4,151 14,221 914 11,99 5,65 25,3 Number of phases** 8,159 33,798 1,577 26,238 9,736,36 of patients* 86.7.6 19.5 43.5 of episodes 82. 56.2 18. 43.8 of phases 83.8 56.3 16.2 43.7 Average number of phases per episode*** 2. 2.4 1.6 2.2 1.9 2.3 * Patients seen in both settings are only counted once in the total column and hence numbers/percentages may not add to the total. ** Bereavement phases are excluded from this count. *** Average number of phases per episode is only calculated for closed episodes that started and ended within the reporting period and excludes bereavement phases. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 46
Table 39 shows the number of completed episodes and phases by setting for each month in the current reporting period for Queensland services. Table 39 Number of completed episodes and phases by month and setting Setting Jul Aug Sep Oct Nov Dec No. of completed episodes 7 742 2 648 618 657 No. of completed phases 1,446 1,498 1,385 1,7 1,232 1,291 No. of completed episodes 141 158 141 136 141 139 No. of completed phases 283 9 269 251 219 246 Table shows the number of patients, episodes and phases for Queensland services over time and is reported by setting of care. Table Number of patients, episodes and phases by setting and reporting period Jan-Jun 14 Jul-Dec 14 Jan-Jun 15 Jul-Dec 15 Jan-Jun 16 Jul-Dec 16 Jan-Jun 14 Jul-Dec 14 Jan-Jun 15 Number of patients* 2,425 2,755 2,885 2,937 2,883 3,359 1,521 1,6 1,455 1,571 759 755 Number of episodes 2,967 3,311 3,513 3,684 3,591 4,151 1,8 2,113 1, 1,915 962 914 Number of phases** 5,626 6,9 7,22 7,89 7,188 8,159 3,6 3,888 3,354 3,959 1,8 1,577 Average number of phases per episode*** 1.9 2. 2. 1.9 2. 2. 1.6 1.7 1.8 2. 1.8 1.6 * Patients seen in both settings are only counted once in the total column and hence numbers/percentages may not add to the total. ** Bereavement phases are excluded from this count. *** Average number of phases per episode is only calculated for closed episodes that started and ended within the reporting period and excludes bereavement phases. Jul-Dec 15 Jan-Jun 16 Jul-Dec 16 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 47
A2 Data item completion As shown in Table 41, Table 42 and Table 43 below, the rate of data completion is very high. In reviewing these tables, it is important to note that in some cases some data items are not required to be completed. For example, place of death is only required for patients who have died. Hence the complete column in the following tables only refers to the percentage of complete records where the data item was relevant. PCOC strongly encourages services to complete and submit the whole data set on every patient as non-completion may result in services being excluded from relevant benchmarking activities or erroneous conclusions being drawn. Low completion of data items may also distort percentages and graphs in some sections. Table 41 Item completion (per cent complete) - patient level Data item Queensland Services Date of birth.. Sex.. Indigenous status 98.9 98.1 Country of birth 99.5 98.4 Preferred language 98.2 99. Primary diagnosis 99.7 99.5 Note: This table is not split by setting to be consistent with the patient level analysis throughout this report. Table 42 Item completion by setting (per cent complete) - episode level Total Data item Queensland Services All Services Queensland Services All Services Queensland Services All Services Date of first contact 99.6 98.8. 99.9 99.7 99.3 Referral date 99.8 99.8 99.9 99.9 99.8 99.9 Referral source 99.7 99.8 99.9. 99.7 99.9 Date ready for care 99.8 97.5 99.9 94.3 99.8 96.1 Mode of episode start. 99.8 99.8. 99.9 99.8 Accommodation at episode start 99.9 99.9 88.2 92.3 97. 95.6 Episode end date * 99.7 99.8 96.6 93.3 99.2 96.9 Mode of episode end 99.9 99.6 99.7 98.8 99.8 99.2 Accommodation at episode end 99.4 99.5. 96.5 99.4 98.8 Place of death na na 99.5 98.4 99.5 98.4 * Episode end date item completion may be affected by open episodes. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 48
Table 43 Item completion by setting (per cent complete) - phase level Data item Sub-Category At phase start At discharge Total Total (where applicable) Queensland All Queensland All Queensland All Queensland All Queensland All Queensland All Services Services Services Services Services Services Services Services Services Services Services Services Bed mobility 99.7 99.6 99.2 95.9 99.6 98. 88.2.2 38.6.9 76.4 68.8 RUG-ADL Toileting 99.7 99.6 99.3 95.9 99.6 98. 88.2.2 38.6.9 76.4 68.8 Transfers 99.6 99.6 99.4 95.8 99.6 98. 88.2.2 38.6.9 76.4 68.8 Eating 99.6 99.5 99. 95.2 99.5 97.6 88.1.2 38.3.5 76.3 68.6 Pain 98.1 99.1 99.1 96.3 98.2 97.9 87.6 89.8 37.1.9 75.5 68.6 PCPSS Other symptom 98.1 97.4 98.7 93.7 98.2 95.8 87.6 88.7 37.1 49.6 75.6 67.4 Psychological / spiritual 98.6 99.2 97.7 95.4 98.4 97.6 87.6 89.8 36.1.4 75.3 68.4 Family / carer 95.6 96.8 95.3 93.6 95.5 95.4 82.8 85.4 36.5 49.7 71.8 65.9 Difficulty sleeping 86.1 89.9 98.9 86.9 88.2 88.6 77..7 36.4 44.1 67.3.8 Appetite problems 86.2 91.5 99. 94.4 88.3 92.8 78. 81.6 36.4 49.2 68.1 64. SAS Nausea 86.3 91.6 99. 95.7 88.3 93.4 76.4 81. 36.5.3 66.9 64.3 Bowel problems 86.2 91.5 98.9 94.2 88.3 92.7 77.9 81.5 36.2 48.6 68. 63.6 Breathing problems 86.2 91.6 98.8 94.9 88.3 93. 78.1 81.7 36.4 49.7 68.2 64.3 Fatigue 86.2 91.5 99. 95.6 88.3 93.3 78.8 81.9 36.4.4 68.7 64.8 Pain 86.3 91.6 99.2 97.9 88.4 94.4 78.4 81.8 36.5 52. 68.4 65.5 AKPS - 99.5 95.8 99.2 96.1 99.4 95.9 87.9 88.2 37.9 52.8 75.9 68.9 Total Data item Queensland Services All Services Queensland Services All Services Queensland Services All Services Phase End Reason 99.6 99.7. 99.9 99.7 99.8 Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 49
Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Level of distress / problem at beginning of phase (%) Appendix B Additional information on profile of SAS and PCPSS Figure 18 Profile of SAS and PCPSS by phase type for Queensland Services inpatient setting Difficulty sleeping (SAS) Appetite problems (SAS) Nausea (SAS) Bowel problems (SAS) Breathing problems (SAS) Fatigue (SAS) Pain (SAS) Absent Mild Moderate Severe Pain (PCPSS) Other symptoms (PCPSS) Psychological spiritual (PCPSS) Family carer (PCPSS) Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report
Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Stable Unstable Deteriorating Terminal Level of distress / problem at beginning of phase (%) Figure 19 Profile of SAS and PCPSS by phase type for Queensland Services community setting Difficulty sleeping (SAS) Appetite problems (SAS) Nausea (SAS) Bowel problems (SAS) Breathing problems (SAS) Fatigue (SAS) Pain (SAS) Absent Mild Moderate Severe Pain (PCPSS) Other symptoms (PCPSS) Psychological spiritual (PCPSS) Family carer (PCPSS) Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 51
Appendix C Data scoping method The method used to determine which data is included in a PCOC report looks at the phase level records first. All phase records that end within the 6 month reporting period are deemed to be in scope and would be included in the report. The episode and patient records associated with these phases are also deemed to be in scope and hence would also be included in the report. Figure below displays four examples to help visualize this process. Figure Diagram of the PCOC data scoping method In Example 1, the patient (represented by the green line) has one episode (represented by the blue line). This episode has six phases (represented by the purple line segments). All six phases would be included in the report as they all end within the reporting period. Hence, the episode and patient would also be in the report. In Example 2, the patient has two episodes - the first having six phases and the second having seven phases. Looking at the phases associated with the first episode, the last four will be included in the report (as they end within the reporting period). The first two phases would have been included in the previous report. For the phases relating to the second episode, only the first three end within the reporting period, so only these would be included in the report. The following four phases would be included in the next report. Both of the episode records and the patient record would also be included in the report. In Example 3, the patient has one episode and five phases. Only the last three phases will be included in the report as they are the only ones ending within the reporting period (the first two phases would have been included in the previous report). The episode and patient records would be included in the report. In Example 4, the patient again has one episode and five phases. This time, only the first three phases will be included in the report (the last two phases will be included in the next report). Again, the episode and patient records would be included in the report. Patient Outcomes in Palliative Care: Results for Queensland, July December 16, detailed report 52