Background
Methods
Setting
Overview of data sources
Dataset
|
Description
|
Data custodian
|
Data holdings (at October 2013)*
|
Coding/classification
|
Cancer cohorts
|
Fact of death
|
Cause of death
|
Resource use/costs
|
---|---|---|---|---|---|---|---|---|
Patient information | ||||||||
Client file | Demographic information and level of entitlement | DVA | April 1992–January 2010 | - | X | |||
Residential aged care | Residence in aged care facility | DVA | July 2005–March 2011 | - | ||||
Registries | ||||||||
Central Cancer Registry | Cancer notifications in NSW | NSW MoH | January 1994–December 2009 | ICD-10 ICD-O-3 | X | x | X | |
Registry of Births, Deaths and Marriages (RBDM) | Deaths in NSW | NSW MoH | January 1994–December 2012 | - | x | x | x | |
Cause of death (part of RBDM) | Cause of death in NSW (coded by Australian Bureau of Statistics) | NSW MoH | January 1994–December 2007 | ICD-9 (94–98) ICD-10-AM (from 97) | x | x | x | |
Health service and prescribed medicines datasets^ | ||||||||
Repatriation Pharmaceutical Benefits Scheme | Pharmaceutical items in the Pharmaceutical Benefits Scheme (PBS) and extra items paid for by the DVA, dispensed anywhere in Australia | DVA | July 2004–January 2010 | R/PBS items mapped to ATC codes | x | X | ||
DVA health services | Medical and allied health services in the Medicare Benefits Schedule (MBS) and extra items paid for by the DVA, delivered anywhere in Australia | DVA | July 2004–February 2011 | MBS items DVA items | x | X | ||
Admitted Patients Data Collection | Inpatient separations from all public and private hospitals in NSW | NSW MoH | July 2000–December 2011 | ICD-10-AM | x | x | x | X |
Emergency Department Data Collection | Emergency department visits to a subset of public hospitals in NSW | NSW MoH | January 2005–June 2012 | ICD-9, ICD-10 SNOMED CT | X |
Patient information
Registers
Prescribed medicines and health service datasets
New South Wales Government datasets
Data linkage
Ethics
Study population
-
Full health care entitlements for the last 12 months of life (to ensure complete capture of all health services and medicines).
-
Resident of NSW for the last 18 months of life.
-
≥ 65 years old at death.
-
Died between 30 June 2005–31 December 2009
-
≥ 1 service claim (hospital, health care service or medicine) in the last 12 months of life.
Cancer cohort eligibility criteria
Non-cancer cohort eligibility criteria
Cause of death
-
We identified cancer causes of death using the codes C00-C43, C45–C97, D03, D05, D45, D46.0–D46.4, D46.7, D46.9, D47.1 and D47.3. All of these cancers are notifiable to the NSW CCR.
-
We grouped non-cancer causes of death based on categories used by the Australian Institute of Health and Welfare (AIHW) and Charlson comorbidity index [23-26]. The most common non-cancer causes of death were heart failure (I21, I22, I25.2, I50, I70–I74, I79.0, R02, Z95.8, Z95.9), cerebrovascular disease (I60–I69), coronary heart disease (I20, I23, I24, I25.0, I25.1, I25.3–I25.9), chronic obstructive pulmonary disease (J40–J44) and dementia (F00–F03, F05.1, G30, G31). Deaths that did not fall into these categories were classified as “other”.
Cohort characteristics
Cancer cohort
|
Non-cancer cohort
| |
---|---|---|
n
= 9,862 | n
= 15,483 | |
n
(%)
|
n
(%)
| |
Sex | ||
Female | 3,116 (31.6) | 7,521 (48.9) |
Male | 6,746 (68.4) | 7,962 (51.4) |
Age at death | ||
65–74 | 294 (3.0) | 254 (1.7) |
75–84 | 4,075 (41.3) | 5,028 (32.5) |
85–94 | 5,215 (52.9) | 9,232 (59.6) |
95–104 | 277 (2.8) | 958 (6.2) |
≥105 | 1 (0.0) | 11 (0.1) |
Year of death | ||
2005 | 1,204 (12.2) | 1,772 (11.4) |
2006 | 2,236 (22.7) | 3,199 (20.7) |
2007 | 2,351 (23.8) | 3,473 (22.4) |
2008 | 2,133 (21.6) | 3,619 (23.4) |
2009 | 1,938 (19.7) | 3,420 (22.1) |
Location of residence at death (remoteness area) | ||
Major cities | 6,147 (62.3) | 9,530 (61.6) |
Inner regional | 2,777 (28.2) | 4,400 (28.4) |
Outer regional | 872 (8.8) | 1,410 (9.1) |
Remote | 39 (0.4) | 81 (0.5) |
Very remote | 5 (0.1) | 2 (0.0) |
Missing | 22 (0.2) | 60 (0.4) |
Socioeconomic disadvantage index at death | ||
(Most disadvantaged) 1–2 | 1,160 (11.8) | 1,862 (12.0) |
3–4 | 2,831 (28.7) | 4,470 (28.9) |
5–6 | 2,032 (20.6) | 3,085 (19.9) |
7–8 | 1,418 (14.4) | 2,248 (14.5) |
(Least disadvantaged) 9–10 | 2,019 (20.5) | 3,183 (20.6) |
Missing | 402 (4.1) | 635 (4.1) |
Charlson comorbidity burden1 | ||
0 | 3,105 (31.5) | 4,451 (28.8) |
1–2 | 1,500 (15.2) | 2,068 (13.4) |
≥3 | 1,713 (17.4) | 1,578 (10.2) |
No hospitalizations during calculation period (cannot calculate) | 3,544 (35.9) | 7,386 (47.7) |
RxRisk comorbidity burden2 | ||
0 | 461 (4.7) | 846 (5.5) |
1–2 | 1,298 (13.2) | 2,130 (13.8) |
3–5 | 3,865 (39.2) | 6,104 (39.4) |
≥6 | 4,238 (43.0) | 6,403 (41.4) |
n
(%)
|
Male (%)
|
Age at diagnosis
|
Time from diagnosis to death
|
Degree of cancer spread,
n
(%)
| ||||
---|---|---|---|---|---|---|---|---|
Median (range)
|
In-situ/localized
|
Regionalized
|
Metastatic
|
Unknown*
| ||||
Median (range)
| ||||||||
All cancers | 9,862 (100) | 6,746 (68.4) | 82.6 (54.5–105.6) | 1.6 (0–15.8) | 3,243 (32.9) | 1,321 (13.4) | 1,592 (16.1) | 3,706 (37.6) |
Prostate (C61) | 1,735 (17.6) | 1,735 (100) | 80.8 (61.8–98.6) | 5.3 (0–15.8) | 586 (34.2) | 53 (3.1) | 150 (8.6) | 943 (54.3) |
Multiple cancers | 1,652 (16.8) | 1,322 (80.0) | 83.5 (64.3–100.0) | 0.9 (0–14.7) | 548 (34.2) | 217 (13.1) | 300 (18.2) | 578 (35.0) |
Colorectal (C18–C21) | 1,049 (10.6) | 615 (58.6) | 82.3 (56.8–101.7) | 2.6 (0–15.7) | 322 (31.7) | 403 (38.4) | 169 (16.1) | 154 (14.7) |
Lung (C33–C34) | 951 (9.6) | 630 (66.2) | 82.6 (56.7–100.9) | 0.4 (0–14.5) | 202 (23.5) | 131 (13.8) | 294 (30.9) | 311 (32.7) |
Melanoma of skin (C43) | 634 (6.4) | 476 (78.1) | 81.7 (57.8–99.3) | 4.1 (0–15.8) | 278 (42.7) | 80 (12.6) | 59 (9.3) | 39 (6.2) |
Haematological (C81–C96) | 663 (6.7) | 379 (57.2) | 83.1 (60.8–102.4) | 1.2 (0–14.8) | 451 (72.2) | 8 (1.2) | 9 (1.4) | 593 (89.4) |
Other** | 571 (5.80) | 355 (62.2) | 83.0 (60.8–100.3) | 2.4 (0–15.1) | 40 (6.4) | 25 (4.4) | 14 (2.4) | 262 (45.9) |
Breast (C50) | 449 (4.6) | 12 (2.7) | 80.3 (54.5–105.6) | 4.9 (0–15.2) | 187 (41.6) | 122 (27.2) | 24 (5.4) | 115 (25.6) |
Digestive organs (C15–C17, C22–C24) | 471 (4.8) | 281 (59.7) | 83.3 (59.8–97.1) | 0.6 (0–15.7) | 134 (31.6) | 98 (20.8) | 91 (19.3) | 137 (29.1) |
Unknown primary site (C26, C39, C76–C80) | 389 (3.9) | 209 (53.7) | 85.5 (66.3–100.7) | 0.1 (0–13.1) | 1 (0.3) | 13 (3.3) | 242 (62.2) | 132 (33.9) |
Bladder (C67) | 299 (3.0) | 218 (72.9) | 83.6 (64.0–98.3) | 1.5 (0–15.6) | 117 (40.9) | 33 (11.4) | 25 (8.4) | 124 (41.5) |
Pancreas (C25) | 282 (2.9) | 144 (51.1) | 84.4 (67.9–97.9) | 0.2 (0–7.8) | 50 (20.4) | 23 (8.2) | 101 (35.8) | 99 (35.1) |
Head and neck (C00–C14, C30–C32) | 226 (2.3) | 176 (77.9) | 81.6 (56.8–99.9) | 2.9 (0–14.6) | 96 (43.4) | 49 (21.7) | 7 (3.1) | 73 (32.3) |
Female genital organs (C51–C58) | 183 (1.9) | 0 (0) | 82.3 (59.2–103.1) | 1.2 (0–15.4) | 52 (30.3) | 38 (20.8) | 54 (29.5) | 39 (21.3) |
Kidney (C64) | 145 (1.5) | 89 (61.4) | 82.3 (63.3–94.9) | 2.0 (0–13.6) | 54 (40.6) | 15 (10.3) | 39 (26.9) | 36 (24.8) |
Connective and soft tissue (C45, C47–C49) | 99 (1.0) | 74 (74.7) | 81.7 (64.6–95.0) | 0.7 (0–13.7) | 28 (29.5) | 12 (12.1) | 14 (14.1) | 42 (42.4) |
Brain (C71) | 64 (0.6) | 31 (48.4) | 82.3 (54.6–93.4) | 0.2 (0–10.6) | 31 (51.7) | 1 (1.6) | 0 | 29 (45.3) |
Cancer diagnosis (n
= 5,550) | No cancer diagnosis (n
= 8,023) | Total (n
= 13,575) | ||||
---|---|---|---|---|---|---|
n
|
%
|
n
|
%
|
n
|
%
| |
Cause of death | ||||||
Cancer (C00-C43, C45–C97, D03, D05, D45, D46.0–D46.4, D46.7, D46.9, D47.1, D47.3) | 3,156 | 58.9 | 0 | 0 | 3,156 | 23.3 |
Heart failure (I21, I22, I25.2, I50, I70–I74, I79.0, R02, Z95.8, Z95.9) | 515 | 9.3 | 1,603 | 20 | 2,118 | 15.6 |
Cerebrovascular disease (I60–I69) | 333 | 6 | 1,232 | 15.4 | 1,565 | 11.5 |
Coronary heart disease (I20, I23, I24, I25.0, I25.1, I25.3–I25.9) | 335 | 6 | 1,025 | 12.8 | 1,360 | 10 |
Chronic obstructive pulmonary disease (J40–J44) | 175 | 3.1 | 545 | 6.8 | 720 | 5.3 |
Dementia (F00–F03, F05.1, G30, G31) | 139 | 2.5 | 696 | 8.7 | 835 | 6.2 |
Other* | 897 | 16.2 | 2,922 | 36.4 | 3,819 | 28.1 |
Outcomes of interest and statistical analyses
Total records
|
Records (last 6 months)
|
Total person years
| |
---|---|---|---|
Cancer cohort (n = 9,862) | |||
Health services (MBS) | 3,571,888 | 1,013,143 | 31,289 |
Prescription drugs (R/PBS) | 2,142,162 | 407,200 | 31,289 |
Hospital services (APDC) | 131,013 | 28,958 | 75,641 |
Emergency department (EDDC) | 27,834 | 12,518 | 26,331 |
Non-cancer cohort (n = 15,483) | |||
Health services (MBS) | 4,758,023 | 1,193,625 | 50,756 |
Prescription drugs (R/PBS) | 3,459,325 | 594,474 | 50,756 |
Hospital services (APDC) | 177,740 | 30,886 | 120,387 |
Emergency department (EDDC) | 41,763 | 16,707 | 42,972 |
Resource utilization
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Symptom management (expect an increase towards the end of life)- such as analgesics for pain management, antiemetics or laxatives;
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Active treatment (use at the end of life may vary by patient and physician preference for active or palliative care)- drugs used for a limited time period with a specific purpose and measurable response such as cancer medicines, antifungal or antibiotic medicines to treat infections;
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Essential (expect prescribing to remain unchanged at the end of life)- ceasing the drug may potentially have serious adverse consequences for patients’ health/quality of life (e.g. anti-epileptic medications or diabetes medicines);
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Non-essential or preventative (expect a decrease towards the end of life in a terminally ill patient)- ceasing the drug would have limited impact on the quality of life of a terminally ill or palliative care patient (e.g. vitamins, statins).
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Diagnostic tests, imaging and pathology;
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Visits to medical practitioners including general practitioners, specialists (e.g. psychiatry, emergency physician, pain and palliative care);
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Allied health (e.g. psychology, occupational therapy), nursing services and multi-disciplinary care plans and case conferences;
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Therapeutic procedures (e.g. chemotherapy, radiation oncology and nuclear medicine);
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Surgeries;
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Dental care;
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Items associated with the receipt of medical services that are for administration or billing purposes only and do not represent a health care service in isolation (e.g. management of bulk billing items that accompany physician attendances that are bulk-billed). These items will not be included in our resource use counts but will be included in our cost analysis.
Costs
2004–05
|
2005–06
|
2006–07
|
2007–08
|
2008–09
|
2009–10
| ||
---|---|---|---|---|---|---|---|
Medicines costs1 | Annual inflation rate (%) | 0.1519 | 0.2123 | 0.2220 | 0.4832 | 0.1603 | 0.0200 |
Monthly inflation rate (%) | 0.0126 | 0.0177 | 0.0185 | 0.0402 | 0.0133 | 0.0017 | |
Medical services costs (MBS)2 | Annual inflation rate (%) | 7.0593 | 4.7857 | 2.7389 | 2.3338 | 1.8166 | |
Medical services costs (dental) | Annual inflation rate (%) | 5.6317 | 4.5525 | 4.5682 | 3.8390 | 4.1654 | |
Medical services costs (other) | Annual inflation rate (%) | 3.5392 | 3.8714 | 1.1189 | 1.3020 | 5.6757 |