Symptom-Related Distress among Indigenous Australians in Specialist End-of-Life Care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Data Source
2.2. Study Participants and Episode of Care Inclusion Criteria
2.3. Study Measures
2.4. Statistical Analysis
2.5. Ethics
3. Results
3.1. Objective 1: First Episodes
3.2. Objective 2: ‘Pre-death’ Episodes
4. Discussion
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
Data Availability Statement
References
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Characteristic | Indigenous | Non-Indigenous | |
---|---|---|---|
First episode analysis | |||
N | 1180 | 107,952 | |
Patient-level characteristics | |||
Age (years) at entry to care, mean (SD) | 63.1 (14.3) | 72.5 (13.5) | |
Age group at entry, n (%) | |||
<65 years | 625 (53.0) | 28,168 (26.1) | |
≥65 years | 555 (47.0) | 79,784 (73.9) | |
Sex, n (%) | |||
Female | 604 (51.2) | 50,096 (46.4) | |
Male | 576 (48.8) | 57,856 (53.6) | |
Principal Diagnosis, n (%) | |||
Cancer | 978 (82.9) | 90,089 (83.5) | |
Other | 202 (17.1) | 17,863 (16.5) | |
Episode/phase-level variables | |||
Setting of care, n (%) | |||
Inpatient overnight admission | 739 (62.6) | 64,808 (60.0) | |
Hospital ambulatory ** | 34 (2.9) | 1755 (1.6) | |
Community | 407 (34.5) | 41,389 (38.3) | |
Episode duration (days) | 32.6 | 33.8 | |
Mean | 11 | 12 | |
Median | 1–717 | 1–1651 | |
Range | |||
Number of phases in episode * | 2.4 | 2.6 | |
2 | 2 | ||
1–31 | 1–139 | ||
Pre-death episode analysis | |||
N | 681 | 67,339 | |
Patient-level characteristics | |||
Age (years) at entry to care, mean (SD) | 64.2 (14.5) | 73.9 (13.4) | |
Age group at entry, n (%) | |||
<65 years | 346 (50.8) | 15,722 (23.3) | |
≥65 years | 335 (49.2) | 51,617 (76.7) | |
Sex, n (%) | |||
Female | 345 (50.7) | 30,848 (45.8) | |
Male | 336 (49.3) | 36,491 (54.2) | |
Principal Diagnosis, n (%) | |||
Cancer | 527 (77.4) | 52,204 (77.5) | |
Other | 154 (22.6) | 15,135 (22.5) | |
Episode/phase-level variables | |||
Setting of care, n (%) | |||
Inpatient overnight admission | 561 (82.4) | 54,206 (80.5) | |
Hospital ambulatory ** | 0 (0.0) | 53 (0.1) | |
Community | 120 (17.6) | 13,080 (19.4) | |
Interval between symptom measurement and death (days) | |||
Mean | 2.1 | 2.1 | |
Median | 1 | 1 | |
Interquartile range | 1–3 | 1–3 | |
Correct recognition of phase as ‘terminal’ at phase start | 521 (76.5) | 51,022 (75.8) |
Model 1: All Settings, Crude | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Model 2: All Settings, Adjusted for Age + Sex + Principal Diagnosis | ||||||||||||
Model 3: Subgroup Cared for in Inpatient Setting, Adjusted for Age + Sex + Principal Diagnosis | ||||||||||||
Model 4: Subgroup Cared for in Community Setting, Adjusted for Age + Sex + Principal Diagnosis | ||||||||||||
Symptom(s) | Model 1 | Model 2 | Model 3 | Model 4 | ||||||||
RR | p | RR (95% CI) | RR | p | RR (95% CI) | RR | p | RR (95% CI) | RR | p | RR (95% CI) | |
Occurrence of moderate-to-severe (SAS score 4–10) symptom/s following commencement of an episode | ||||||||||||
Any symptom | 0.99 | 0.682 | (0.96–1.03) | 0.97 | 0.115 | (0.94–1.01) | 0.99 | 0.792 | (0.95–1.04) | 0.96 | 0.084 | (0.91–1.01) |
≥3 symptoms | 0.96 | 0.313 | (0.89–1.04) | 0.91 | 0.013 | (0.84–0.98) | 0.94 | 0.211 | (0.85–1.04) | 0.89 | 0.060 | (0.79–1.01) |
Pain | 1.07 | 0.087 | (0.99–1.16) | 0.97 | 0.403 | (0.89–1.05) | 0.97 | 0.508 | (0.87–1.07) | 0.97 | 0.660 | (0.85–1.11) |
Nausea | 0.90 | 0.231 | (0.76–1.07) | 0.79 | 0.005 * | (0.67–0.93) | 0.82 | 0.071 | (0.66–1.02) | 0.80 | 0.091 | (0.61–1.04) |
Breathing problem | 1.02 | 0.624 | (0.93–1.13) | 1.00 | 0.925 | (0.91–1.10) | 1.00 | 0.972 | (0.89–1.13) | 1.03 | 0.732 | (0.88–1.20) |
Bowel problems | 0.90 | 0.080 | (0.79–1.01) | 0.88 | 0.033 | (0.78–0.99) | 0.89 | 0.099 | (0.77–1.02) | 0.83 | 0.119 | (0.66–1.05) |
Appetite problems | 0.88 | 0.007 | (0.81–0.97) | 0.87 | 0.003 * | (0.80–0.96) | 0.93 | 0.233 | (0.83–1.05) | 0.84 | 0.017 | (0.74–0.97) |
Insomnia | 1.08 | 0.155 | (0.97–1.21) | 0.97 | 0.596 | (0.87–1.08) | 1.06 | 0.436 | (0.92–1.22) | 0.92 | 0.355 | (0.76–1.10) |
Fatigue | 0.97 | 0.202 | (0.92–1.02) | 0.95 | 0.037 | (0.90–1.00) | 0.99 | 0.814 | (0.93–1.06) | 0.91 | 0.013 | (0.85–0.98) |
Worsening (SAS score increment ≥ 2) of symptom/s at any point following commencement of an episode | ||||||||||||
Any symptom | 0.95 | 0.111 | (0.90–1.01) | 0.95 | 0.069 | (0.89–1.00) | 0.96 | 0.289 | (0.88–1.04) | 0.95 | 0.244 | (0.88–1.03) |
≥3 symptoms | 0.97 | 0.604 | (0.86–1.09) | 0.94 | 0.319 | (0.84–1.06) | 0.98 | 0.854 | (0.83–1.16) | 0.99 | 0.859 | (0.84–1.15) |
Pain | 0.97 | 0.655 | (0.87–1.09) | 0.95 | 0.380 | (0.85–1.07) | 0.96 | 0.618 | (0.82–1.13) | 0.99 | 0.930 | (0.85–1.16) |
Nausea | 0.85 | 0.079 | (0.70–1.02) | 0.77 | 0.006* | (0.64–0.93) | 0.75 | 0.051 | (0.57–1.00) | 0.86 | 0.224 | (0.67–1.10) |
Breathing problems | 0.95 | 0.412 | (0.83–1.08) | 0.94 | 0.336 | (0.82–1.07) | 0.96 | 0.665 | (0.8–1.15) | 0.96 | 0.706 | (0.78–1.18) |
Bowel problems | 0.94 | 0.398 | (0.82–1.08) | 0.94 | 0.411 | (0.82–1.08) | 0.95 | 0.535 | (0.79–1.13) | 0.97 | 0.795 | (0.78–1.21) |
Appetite problems | 0.94 | 0.347 | (0.83–1.07) | 0.94 | 0.303 | (0.82–1.06) | 1.04 | 0.657 | (0.87–1.24) | 0.91 | 0.304 | (0.76–1.09) |
Insomnia | 1.05 | 0.510 | (0.91–1.20) | 1.00 | 0.984 | (0.87–1.15) | 1.11 | 0.291 | (0.92–1.34) | 0.96 | 0.665 | (0.78–1.17) |
Fatigue | 0.94 | 0.226 | (0.84–1.04) | 0.93 | 0.204 | (0.84–1.04) | 0.91 | 0.196 | (0.78–1.05) | 1.01 | 0.932 | (0.87–1.17) |
Model 1: All Settings, Crude | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Model 2: All Settings, Adjusted for Age + Sex + Principal Diagnosis + Interval between Assessment and Death (i.e., Final Phase Length) | ||||||||||||
Model 3: Subgroup Cared for in Inpatient Setting, Adjusted for Age + Sex + Principal Diagnosis + Interval between Assessment and Death | ||||||||||||
Model 4: Subgroup Cared for in Community Setting, Adjusted for Age + Sex + Principal Diagnosis + Interval between Assessment and Death | ||||||||||||
Symptom(s) | Model 1 | Model 2 | Model 3 | Model 4 | ||||||||
RR | p | RR (95% CI) | RR | p | RR (95% CI) | RR | p | RR (95% CI) | RR | p | RR (95% CI) | |
Any symptom | 1.00 | 0.870 | (0.94–1.05) | 0.97 | 0.400 | (0.91–1.04) | 1.03 | 0.362 | (0.96–1.11) | 0.78 | 0.001 * | (0.67–0.91) |
≥3 symptoms | 1.04 | 0.571 | (0.92–1.17) | 0.93 | 0.333 | (0.81–1.07) | 1.01 | 0.898 | (0.87–1.17) | 0.65 | 0.030 | (0.45–0.96) |
Pain | 1.12 | 0.051 | (1.00–1.25) | 0.98 | 0.743 | (0.87–1.11) | 1.04 | 0.545 | (0.91–1.19) | 0.68 | 0.044 | (0.47–0.99) |
Nausea | 0.83 | 0.195 | (0.62–1.10) | 0.72 | 0.049 | (0.52–1.00) | 0.77 | 0.137 | (0.54–1.09) | 0.53 | 0.150 | (0.22–1.26) |
Breathing problem | 1.09 | 0.105 | (0.98–1.22) | 1.02 | 0.741 | (0.91–1.14) | 1.07 | 0.246 | (0.95–1.21) | 0.79 | 0.180 | (0.57–1.11) |
Bowel problems | 0.84 | 0.065 | (0.69–1.01) | 0.79 | 0.035 | (0.64–0.98) | 0.81 | 0.076 | (0.65–1.02) | 0.69 | 0.213 | (0.38–1.24) |
Appetite problems | 0.82 | 0.010 | (0.71–0.95) | 0.81 | 0.013 | (0.68–0.96) | 0.90 | 0.255 | (0.74–1.08) | 0.55 | 0.004 * | (0.37–0.83) |
Insomnia | 1.11 | 0.256 | (0.92–1.34) | 0.97 | 0.806 | (0.79–1.21) | 0.96 | 0.777 | (0.75–1.24) | 1.02 | 0.910 | (0.68–1.55) |
Fatigue | 0.97 | 0.426 | (0.89–1.05) | 0.95 | 0.265 | (0.86–1.04) | 1.00 | 0.984 | (0.90–1.11) | 0.80 | 0.029 | (0.66–0.98) |
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Woods, J.A.; Johnson, C.E.; Ngo, H.T.; Katzenellenbogen, J.M.; Murray, K.; Thompson, S.C. Symptom-Related Distress among Indigenous Australians in Specialist End-of-Life Care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data. Int. J. Environ. Res. Public Health 2020, 17, 3131. https://doi.org/10.3390/ijerph17093131
Woods JA, Johnson CE, Ngo HT, Katzenellenbogen JM, Murray K, Thompson SC. Symptom-Related Distress among Indigenous Australians in Specialist End-of-Life Care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data. International Journal of Environmental Research and Public Health. 2020; 17(9):3131. https://doi.org/10.3390/ijerph17093131
Chicago/Turabian StyleWoods, John A., Claire E. Johnson, Hanh T. Ngo, Judith M. Katzenellenbogen, Kevin Murray, and Sandra C. Thompson. 2020. "Symptom-Related Distress among Indigenous Australians in Specialist End-of-Life Care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data" International Journal of Environmental Research and Public Health 17, no. 9: 3131. https://doi.org/10.3390/ijerph17093131