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Symptom Assessment and Management

Key findings

Measure:  Percentage of cancer patients screened at least once per month for symptoms

 

Desired Direction:

 

An image of an arrow pointing upwards. This indicates that desired direction for this action is upwards.

 

As of this Report:

 

An image of an arrow pointing upwards in a yellow box. This indicates that there has been an increase in performance over the previous periods identified and this action is below but approaching target or has notable regional variation.

Cancer Care Ontario captures patient-reported outcomes (PROs) using three tools: (a) Your Symptoms Matter – General Symptoms (YSM – General); (b) Your Symptoms Matter – Prostate Cancer (YSM – Prostate) and (c) YSM – Daily Activities.

The percentage of patients who were screened for symptoms using YSM – General increased from 52% in fiscal year 2012/2013 to 58% in fiscal year 2016/2017. Five of 14 Regional Cancer Centres (RCCs) are meeting or exceeding Cancer Care Ontario’s target PROs screening rate of 70%. In total, 381,298 unique patients were screened in fiscal year 2016/2017 using YSM –General and YSM – Prostate.

Fifty-two percent (52%) of patients surveyed in 2017 said that their healthcare team always discussed their YSM – General scores with them, which is similar to the rate in 2016 (53%).

What is symptom screening? 

  • Symptom screening is the identification and triage of patient symptoms. YSM – General (formerly known as the Edmonton Symptom Assessment System, or ESAS) and YSM – Prostate are tools designed to help patients identify and report their symptoms to their healthcare team. Combined YSM – General and YSM – Prostate make up the PROs screening rate.
  • YSM – General asks patients to rate the severity of 9 symptoms commonly experienced by cancer patients. These include physical symptoms (such as pain, shortness of breath, lack of appetite, and fatigue) and emotional symptoms (such as depression and anxiety). It also assesses the overall well-being of patients.
  • YSM – Prostate asks patients to rate the severity of 5 common types of symptoms experienced by prostate cancer patients: bowel function, urinary irritation/obstruction, urinary incontinence, hormone/vitality and sexual function. These symptoms are discussed in 17 questions.

Measure:  Percentage of patients who report that their healthcare team always talked to them about symptoms of concern

 

Desired Direction:

 

An image of an arrow pointing upwards. This indicates that desired direction for this action is upwards.

 

As of this Report:

 

An image of an arrow pointing straight in a yellow box. This indicates that there has been no increase or decrease in performance over the previous periods identified and this action is below but approaching target or has notable regional variation.

  • In 2013, the Symptom Management Program added a PRO called YSM – Daily Activities (formerly Patient Reported Functional Status); this tool allows patients to rate their functional status. This rating helps clinicians better understand how patients are physically functioning, and this additional information can guide care planning and treatment decisions.

How is the patient experience with symptom screening and management monitored?

  • A new Symptom Management Patient Experience Survey was launched through the Ontario Cancer Symptom Management Collaborative (OCSMC) in December 2014. The revised survey was developed in response to clinician and patient feedback requesting that questions be refined to elicit data that would help better support symptom management quality improvement efforts.
  • The survey was developed using a multiphase, rigorous and consensus-building process to identify key domains and indicators.
  • From December 2016 to January 2017, 3,653 patients from the 14 RCCs completed the Symptom Management Patient Experience Survey.

A responsive cancer system is one which provides quality care as quickly as possible, but which is respectful of individual needs and wishes. It is a system that responds to patient concerns and questions honestly and thoroughly, and that is open about its own limitations.

Gordon V., Patient/Family Advisor

Figure 1. Percentage of cancer patients who were screened at least once per month for symptom severity, by Regional Cancer (RCC) of screening, fiscal year 2012/2013 to fiscal year 2016/2017

More information regarding the methodology is available.

Report date: December 2017

Data source: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. See technical notes for detailed methodology and inclusions/exclusions

Figure 2. Symptom severity for patients with all types of cancer, all reporting Regional Cancer Centres (RCC), fiscal year 2016/2017

More information regarding the methodology is available.

Report date: December 2017

Data source: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. See technical notes for detailed methodology and inclusions/exclusions

Figure 3. [Theme: communication] Percentage of patients who report that their healthcare team talked to them about symptoms of concern, 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Figure 4. [Theme: communication] Percentage of patients who report that their healthcare team talked to them about symptoms of concern, by Regional Cancer Centre (RCC), 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See technical notes for detailed methodology and inclusions/exclusions.

Figure 5. [Theme: response to symptoms] Percentage of patients who report that their healthcare team treats and manages their physical symptoms, 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Figure 6. [Theme: response to symptoms] Percentage of patients who report that their healthcare team treats and manages their physical symptoms, by Regional Cancer Centre (RCC), 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See technical notes for detailed methodology and inclusions/exclusions.

Figure 7. [Theme: response to symptoms] Percentage of patients who report that their healthcare team responds to their worries, concerns or feelings of sadness, 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Figure 8. [Theme: response to symptoms] Percentage of patients who report that their healthcare team responds to their worries, concerns or feelings of sadness, by Regional Cancer Centre (RCC), 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See technical notes for detailed methodology and inclusions/exclusions.

Figure 9. [Theme: shared decision-making] Percentage of patients who report that their healthcare team includes them in decisions about how to treat and manage their symptoms, 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Figure 10. [Theme: shared decision-making] Percentage of patients who report that their healthcare team includes them in decisions about how to treat and manage their symptoms, by Regional Cancer Centre (RCC), 2015 to 2017

More information regarding the methodology is available.

Report date: January 2018

Data source: CCO Advisor Experience Survey for On-going Engagement

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See “Technical notes” for detailed methodology and inclusions/exclusions.

Data Table 1. Percentage of cancer patients who were screened at least once per month for symptom severity, by Regional Cancer (RCC) of screening, fiscal year 2012/2013 to fiscal year 2016/2017

RCC PROs screening rate in fiscal year 2012/2013 Number of cancer patients who were screened at least once with PROs in fiscal year 2012/2013 Number of cancer patients seen by a Regional Cancer Centre in a given month in fiscal year 2012/2013 Upper confidence interval in fiscal year 2012/2013 Lower confidence interval in fiscal year 2012/2013 PROs screening rate in fiscal year 2013/2014 Number of cancer patients who were screened at least once with PROs in fiscal year 2013/2014 Number of cancer patients seen by a Regional Cancer Centre in a given month in fiscal year 2013/2014 Upper confidence interval in fiscal year 2013/2014 Lower confidence interval in fiscal year 2013/2014 PROs screening rate in fiscal year 2014/2015 Number of cancer patients who were screened at least once with PROs in fiscal year 2014/2015 Number of cancer patients seen by a Regional Cancer Centre in a given month in fiscal year 2014/2015 Upper confidence interval in fiscal year 2014/2015 Lower confidence interval in fiscal year 2014/2015 PROs screening rate in fiscal year 2015/2016 Number of cancer patients who were screened at least once with PROs in fiscal year 2015/2016 Number of cancer patients seen by a Regional Cancer Centre in a given month in fiscal year 2015/2016 Upper confidence interval in fiscal year 2015/2016 Lower confidence interval in fiscal year 2015/2016 PROs screening rate in fiscal year 2016/2017 Number of cancer patients who were screened at least once with PROs in fiscal year 2016/2017 Number of cancer patients seen by a Regional Cancer Centre in a given month in fiscal year 2016/2017 Upper confidence interval in fiscal year 2016/2017 Lower confidence interval in fiscal year 2016/2017
All reporting cancer centres 52.3 299,565 572,951 52.4 52.2 56.7 336,976 594,267 56.8 56.6 54.9 334,200 608,838 55.0 54.8 58.8 371,023 631,424 58.9 58.6 58.3 381,298 654,016 58.4 58.2
Windsor RCC 71.8 15,406 21,459 72.4 71.2 70.8 14,136 19,976 71.4 70.1 69.8 13,741 19,680 70.5 69.2 67.7 14,328 21,149 68.4 67.1 58.5 13,484 23,032 59.2 57.9
London RCP 61.6 31,806 51,631 62.0 61.2 49.3 25,657 52,055 49.7 48.9 33.6 17,644 52,493 34.0 33.2 55.2 29,937 54,250 55.6 54.8 79.2 43,211 54,555 79.5 78.9
Grand River RCC (Kitchener) 76.9 17,391 22,617 77.4 76.3 72.0 17,406 24,185 72.5 71.4 68.2 17,218 25,255 68.7 67.6 69.0 18,348 26,592 69.6 68.4 67.9 18,880 27,787 68.5 67.4
Juravinski (Hamilton) 60.9 39,746 65,211 61.3 60.6 45.3 29,568 65,270 45.7 44.9 38.7 24,910 64,286 39.1 38.4 40.0 25,996 64,929 40.4 39.7 38.7 25,904 66,904 39.1 38.3
Carlo Fidani (Peel) 78.4 24,133 30,770 78.9 78.0 60.6 25,828 42,619 61.1 60.1 56.5 24,844 43,941 57.0 56.1 55.6 25,708 46,215 56.1 55.2 49.7 24,437 49,215 50.1 49.2
UHN/PMH (Toronto) 24.9 28,100 113,003 25.1 24.6 62.9 72,334 114,945 63.2 62.6 60.0 71,421 119,098 60.2 59.7 58.2 72,140 123,870 58.5 58.0 55.9 68,966 123,290 56.2 55.7
Odette (Toronto Sunnybrook) 26.6 20,399 76,810 26.9 26.2 37.5 28,792 76,806 37.8 37.1 57.1 45,266 79,283 57.4 56.7 55.5 45,703 82,276 55.9 55.2 54.2 45,839 84,648 54.5 53.8
Stronach RCC (Newmarket) 90.2 15,154 16,805 90.6 89.7 88.6 15,869 17,902 89.1 88.2 81.9 15,599 19,040 82.5 81.4 73.1 14,552 19,894 73.8 72.5 71.0 14,871 20,948 71.6 70.4
MDRCC (Oshawa) 69.4 22,564 32,535 69.9 68.9 69.6 22,755 32,690 70.1 69.1 76.6 25,024 32,677 77.0 76.1 80.0 27,025 33,764 80.5 79.6 77.1 27,052 35,069 77.6 76.7
Southeastern RCC (Kingston) 48.2 11,286 23,428 48.8 47.5 60.7 14,790 24,364 61.3 60.1 64.1 16,693 26,058 64.6 63.5 60.4 16,753 27,759 60.9 59.8 57.0 16,555 29,039 57.6 56.4
Ottawa RCC 51.8 35,444 68,480 52.1 51.4 45.4 31,722 69,848 45.8 45.0 37.7 27,268 72,420 38.0 37.3 58.0 43,260 74,544 58.4 57.7 51.3 40,650 79,216 51.7 51.0
Simcoe-Muskoka RCC 77.5 14,475 18,679 78.1 76.9 68.7 14,903 21,685 69.3 68.1 53.0 11,838 22,341 53.6 52.3 52.2 12,817 24,560 52.8 51.6 58.9 15,513 26,359 59.4 58.3
North East (Sudbury) 77.2 16,700 21,639 77.7 76.6 82.8 17,763 21,442 83.3 82.3 78.6 16,487 20,987 79.1 78.0 82.8 17,293 20,882 83.3 82.3 79.3 15,984 20,145 79.9 78.8
Northwestern (Thunder Bay) 70.4 6,961 9,884 71.3 69.5 52.0 5,453 10,480 53.0 51.1 55.4 6,247 11,279 56.3 54.5 66.7 7,163 10,740 67.6 65.8 72.1 9,952 13,809 72.8 71.3

Report date: December 2017

Data source: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. See technical notes for detailed methodology and inclusions/exclusions

Data Table 2. Symptom severity for patients with all types of cancer, all reporting Regional Cancer Centres (RCC), fiscal year 2016/2017

Symptom ESAS-r percentage severity by symptom, 1 to 3 (low severity) Number of cancer patient ESAS screens with low severity Number of cancer patient ESAS screens Upper confidence interval, 1 to 3 (low severity) Lower confidence interval, 1 to 3 (low severity) ESAS-r percentage severity by symptom, 4 to 6 (moderate severity) Number of cancer patient ESAS screens with moderate severity Number of cancer patient ESAS screens Upper confidence interval, 4 to 6 (moderate severity) Lower confidence interval, 4 to 6 (moderate severity) ESAS-r percentage severity by symptom, 7 to 10 (high severity) Number of cancer patient ESAS screens with high severity Number of cancer patient ESAS screens Upper confidence interval, 7 to 10 (high severity) Lower confidence interval, 7 to 10 (high severity)
Tiredness 41.6 224,937 540,322 41.8 41.5 22.4 120,867 540,322 22.5 22.3 11.8 63,494 540,322 11.8 11.7
Well-being 42.5 229,070 539,428 42.6 42.3 22.3 120,135 539,428 22.4 22.2 7.8 42,062 539,428 7.9 7.7
Anxiety 36.4 196,366 540,088 36.5 36.2 13.8 74,340 540,088 13.9 13.7 6.5 35,050 540,088 6.6 6.4
Drowsiness 33.6 181,541 540,063 33.7 33.5 13.7 73,868 540,063 13.8 13.6 6.0 32,350 540,063 6.1 5.9
Pain 32.3 174,462 540,400 32.4 32.2 12.8 68,983 540,400 12.9 12.7 6.0 32,241 540,400 6.0 5.9
Depression 29.1 157,072 540,136 29.2 29.0 11.0 59,209 540,136 11.0 10.9 4.6 24,915 540,136 4.7 4.6
Shortness of breath 28.4 153,538 540,140 28.5 28.3 10.6 57,065 540,140 10.6 10.5 4.8 25,790 540,140 4.8 4.7
Lack of appetite 23.1 124,806 540,186 23.2 23.0 11.4 61,481 540,186 11.5 11.3 5.6 30,399 540,186 5.7 5.6
Nausea 17.3 93,402 540,176 17.4 17.2 4.6 24,945 540,176 4.7 4.6 1.7 9,188 540,176 1.7 1.7

Report date: December 2017

Data source: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. See technical notes for detailed methodology and inclusions/exclusions

Data Table 3. [Theme: communication] Percentage of patients who report that their healthcare team talked to them about symptoms of concern, 2015 to 2017

Response option Percentage (%) of responses in 2015 Number of responses in 2015 Percentage (%) of responses in 2016 Number of responses in 2016 Percentage (%) of responses in 2017 Number of responses in 2017
Always 55.0% 2,344 53.2% 1,945 51.9% 1,573
Sometimes 21.0% 906 21.4% 782 21.1% 640
Rarely/never 8.0% 353 8.7% 318 8.8% 268
Have never filled in a symptom assessment form 4.0% 173 4.7% 173 5.1% 154
Usually do not have concerning symptoms to report 12.0% 508 11.9% 435 12.9% 391

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Data Table 4. [Theme: communication] Percentage of patients who report that their healthcare team talked to them about symptoms of concern, by Regional Cancer Centre (RCC), 2015 to 2017

RCC Percentage of always responses (percentage adjusted) in 2015 Percentage of sometimes responses in 2015 Total in 2015 Number of responses (adjusted) in 2015 Percentage of always responses (percentage adjusted) in 2016 Percentage of sometimes responses in 2016 Total in 2016 Number of responses (adjusted) in 2016 Percentage of always responses (percentage adjusted) in 2017 Percentage of sometimes responses in 2017 Total in 2017 Number of responses (adjusted) in 2017
Ontario 65.0% 25.3% 90.3% 3,605 64.0% 25.0% 89.0% 3,045 63.0% 26.0% 89.0% 2,487
Erie St. Clair 83.1% 8.7% 91.8% 219 83.0% 10.0% 93.0% 179 87.8% 9.5% 97.0% 148
South West 66.7% 25.4% 92.1% 1,239 74.0% 21.0% 95.0% 607 72.5% 22.2% 94.0% 356
Waterloo Wellington 64.7% 26.3% 91.0% 156 61.0% 28.0% 89.0% 160 60.2% 29.1% 89.0% 103
Hamilton Niagara Haldimand Brant 58.8% 29.4% 88.1% 194 57.0% 31.0% 88.0% 350 60.9% 29.6% 91.0% 450
Mississauga Halton/Central West 68.4% 27.2% 95.6% 136 62.0% 27.0% 89.0% 104 64.5% 17.8% 82.0% 107
Toronto Central South 56.3% 27.3% 83.6% 483 52.0% 30.0% 82.0% 516 56.3% 28.2% 84.0% 490
Toronto Central North 53.7% 32.2% 85.9% 149 52.0% 32.0% 84.0% 122 59.8% 25.2% 85.0% 127
Central 54.4% 33.8% 88.2% 136 69.0% 28.0% 97.0% 71 65.0% 22.3% 87.0% 103
Central East 71.8% 21.4% 93.2% 206 68.0% 23.0% 91.0% 298 66.2% 24.6% 91.0% 130
South East 87.1% 10.8% 97.8% 93 71.0% 11.0% 82.0% 73 74.2% 24.2% 98.0% 66
Champlain 63.6% 26.5% 90.1% 272 63.0% 26.0% 89.0% 239 64.7% 27.9% 93.0% 136
North Simcoe Muskoka 69.6% 23.5% 93.0% 115 62.0% 23.0% 85.0% 26 57.1% 28.6% 86.0% 56
North East 59.9% 25.5% 85.4% 157 58.0% 30.0% 88.0% 169 52.5% 31.7% 85.0% 120
North West 52.0% 36.0% 88.0% 50 60.0% 31.0% 91.0% 131 48.9% 36.4% 85.0% 88

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See technical notes for detailed methodology and inclusions/exclusions.

Data Table 5. [Theme: response to symptoms] Percentage of patients who report that their healthcare team treats and manages their physical symptoms, 2015 to 2017

Response option Percentage (%) of responses in 2015 Number of responses in 2015 Percentage (%) of reponses in 2016 Number of responses in 2016 Percentage (%) of responses in 2017 Number of responses in 2017
Always 66.4% 2,670 64.7% 2,227 65.3% 1,883
Sometimes 11.0% 443 11.9% 409 9.6% 276
Rarely/never 2.6% 106 3.3% 114 2.5% 71
Usually do not have concerning symptoms to report 20.1% 809 20.1% 692 21.5% 620

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Data Table 6. [Theme: response to symptoms] Percentage of patients who report that their healthcare team treats and manages their physical symptoms, by Regional Cancer Centre (RCC), 2015 to 2017

RCC Percentage of always responses in 2015 Percentage of sometimes responses in 2015 Total in 2015 Number of responses in 2015 Percentage of always responses in 2016 Percentage of sometimes responses in 2016 Total in 2016 Number of responses in 2016 Percentage of always responses in 2017 Percentage of sometimes responses in 2017 Total in 2017 Number of responses in 2017
Ontario 83.0% 13.8% 96.8% 3,215 81.0% 15.0% 96.0% 2,750 84.4% 12.4% 96.0% 2,230
Erie St. Clair 89.6% 6.1% 95.7% 230 88.0% 7.0% 95.0% 194 91.7% 6.0% 97.7% 133
South West 82.8% 14.8% 97.7% 1,064 83.0% 15.0% 98.0% 529 83.1% 13.4% 96.0% 307
Waterloo Wellington 85.8% 10.6% 96.5% 141 85.0% 13.0% 98.0% 151 79.7% 16.5% 96.2% 79
Hamilton Niagara Haldimand Brant 86.3% 9.8% 96.2% 183 82.0% 16.0% 98.0% 327 85.6% 11.7% 98.0% 409
Mississauga Halton/Central West 82.2% 15.5% 97.7% 129 79.0% 18.0% 97.0% 104 88.5% 9.6% 98.0% 104
Toronto Central South 75.9% 20.0% 95.8% 406 77.0% 16.0% 93.0% 447 81.7% 14.7% 97.0% 442
Toronto Central North 72.1% 17.2% 89.3% 122 69.0% 23.0% 92.0% 98 85.3% 11.0% 96.0% 109
Central 87.0% 10.6% 97.6% 123 85.0% 14.0% 99.0% 66 95.5% 4.5% 100.0% 88
Central East 84.8% 12.9% 97.6% 210 81.0% 15.0% 96.0% 280 85.2% 10.9% 96.0% 128
South East 86.8% 12.1% 98.9% 91 65.0% 25.0% 90.0% 72 84.5% 12.1% 96.0% 58
Champlain 84.0% 13.1% 97.0% 237 89.0% 8.0% 97.0% 196 82.7% 15.7% 99.0% 127
North Simcoe Muskoka 95.1% 7.2% 102.3% 102 78.0% 17.0% 95.0% 23 90.2% 8.2% 98.0% 61
North East 82.2% 14.1% 96.3% 135 82.0% 15.0% 97.0% 151 82.4% 13.0% 95.0% 108
North West 73.8% 19.0% 92.9% 42 74.0% 19.0% 93.0% 112 72.7% 19.5% 92.2% 77

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See technical notes for detailed methodology and inclusions/exclusions.

Data Table 7. [Theme: response to symptoms] Percentage of patients who report that their healthcare team responds to their worries, concerns or feelings of sadness, 2015 to 2017

Response option Percentage (%) of responses in 2015 Number of responses in 2015 Percentage (%) of responses in 2016 Number of responses in 2016 Percentage (%) of responses in 2017 Number of responses in 2017
Always 58.0% 2,317 56.0% 1,949 55.9% 1,616
Sometimes 12.0% 484 13.0% 444 11.3% 326
Rarely/never 5.0% 184 4.1% 141 4.6% 133
Usually do not have worries, concerns or feelings of sadness 25.9% 1,044 26.9% 933 27.2% 786

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Data Table 8. [Theme: response to symptoms] Percentage of patients who report that their healthcare team responds to their worries, concerns or feelings of sadness, by Regional Cancer Centre (RCC), 2015 to 2017

RCC Percentage of always responses in 2015 Percentage of sometimes responses in 2015 Total in 2015 Number of responses in 2015 Percentage of always responses in 2016 Percentage of sometimes responses in 2016 Total in 2016 Number of responses in 2016 Percentage of always responses in 2017 Percentage of sometimes responses in 2017 Total in 2017 Number of responses in 2017
Ontario 77.3% 16.5% 93.8% 2,985 77.0% 18.0% 95.0% 2,534 77.9% 15.7% 93.6% 2,075
Erie St. Clair 71.6% 13.1% 84.7% 183 82.0% 8.0% 90.0% 189 59.2% 17.5% 76.0% 103
South West 79.8% 15.3% 95.1% 1,004 79.0% 18.0% 97.0% 487 81.1% 12.8% 93.9% 296
Waterloo Wellington 88.6% 6.5% 95.1% 123 82.0% 15.0% 97.0% 130 77.2% 15.2% 92.4% 79
Hamilton Niagara Haldimand Brant 74.4% 18.6% 93.0% 172 79.0% 16.0% 95.0% 313 81.2% 14.3% 95.0% 378
Mississauga Halton/Central West 75.6% 21.0% 96.6% 119 74.0% 23.0% 97.0% 100 84.2% 10.9% 95.0% 101
Toronto Central South 68.8% 22.1% 90.9% 362 70.0% 20.0% 90.0% 385 72.8% 20.1% 92.8% 389
Toronto Central North 70.2% 19.0% 89.2% 121 66.0% 28.0% 94.0% 98 76.3% 14.9% 91.2% 114
Central 81.7% 9.4% 91.1% 115 84.0% 12.0% 96.0% 51 90.5% 8.3% 98.8% 84
Central East 82.0% 14.8% 96.8% 189 78.0% 17.0% 95.0% 262 83.3% 14.3% 97.0% 126
South East 87.2% 11.6% 98.8% 86 76.0% 24.0% 100.0% 63 84.0% 14.0% 98.0% 50
Champlain 82.3% 13.7% 96.0% 226 82.0% 15.0% 97.0% 184 82.5% 15.9% 99.0% 126
North Simcoe Muskoka 78.5% 16.8% 95.3% 107 82.0% 14.0% 96.0% 22 82.1% 14.3% 96.4% 56
North East 75.0% 17.6% 92.6% 136 80.0% 14.0% 94.0% 150 75.5% 18.1% 93.6% 94
North West 66.7% 31.0% 97.7% 42 65.0% 29.0% 94.0% 100 60.8% 26.6% 88.0% 79

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See technical notes for detailed methodology and inclusions/exclusions.

Data Table 9. [Theme: shared decision-making] Percentage of patients who report that their healthcare team includes them in decisions about how to treat and manage their symptoms, 2015 to 2017

Response options Percentage (%) of responses in 2015 Number of responses of responses in 2015 Percentage (%) of responses in 2016 Number of responses in 2016 Percentage (%) of responses in 2017 Number of responses in 2017
Always 72.6% 2,908 70.7% 2,444 71.7% 2,074
Sometimes 9.9% 396 10.1% 397 9.1% 263
Rarely/never 1.8% 70 2.1% 71 1.8% 52
Prefer health care team to always makes decisions about how to treat/manage symptoms 4.6% 183 5.2% 178 3.7% 106
Usually do not have symptoms 11.2% 450 12.1% 418 12.5% 361

Report date: January 2018

Data source: Symptom Management Patient Experience Survey

Prepared by: Cancer Care Ontario

Note:

  1. * represents unadjusted values and includes all survey options. See “Technical notes” for detailed methodology and inclusions/exclusions.

Data Table 10. [Theme: shared decision-making] Percentage of patients who report that their healthcare team includes them in decisions about how to treat and manage their symptoms, by Regional Cancer Centre (RCC), 2015 to 2017

RCC Percentage of always responses in 2015 Percentage of sometimes responses in 2015 Total in 2015 Number of responses in 2015 Percentage of always responses in 2016 Percentage of sometimes responses in 2016 Total in 2016 Number of responses in 2016 Percentage of always responses in 2017 Percentage of sometimes responses in 2017 Total in 2017 Number of responses in 2017
Ontario 85.3% 12.5% 97.8% 3,374 85.0% 12.0% 97.0% 2,863 86.8% 11.0% 98.0% 2,389
Erie St. Clair 93.5% 6.1% 99.6% 247 94.0% 5.0% 99.0% 191 92.3% 5.8% 98.0% 156
South West 87.0% 11.1% 98.1% 1,143 90.0% 9.0% 99.0% 562 86.1% 10.6% 97.0% 339
Waterloo Wellington 90.5% 8.2% 98.6% 147 86.0% 11.0% 97.0% 157 85.6% 13.3% 99.0% 90
Hamilton Niagara Haldimand Brant 85.0% 11.4% 96.4% 193 85.0% 14.0% 99.0% 337 88.7% 9.5% 98.0% 433
Mississauga Halton/Central West 85.0% 13.5% 98.5% 133 79.0% 18.0% 97.0% 106 86.5% 9.0% 95.0% 111
Toronto Central South 82.1% 15.9% 97.9% 435 81.0% 15.0% 96.0% 471 85.3% 12.3% 97.0% 470
Toronto Central North 81.4% 13.2% 94.6% 129 80.0% 18.0% 98.0% 106 86.0% 13.2% 99.0% 114
Central 91.1% 8.9% 100.0% 123 86.0% 13.0% 99.0% 70 95.5% 4.5% 100.0% 89
Central East 89.3% 9.3% 98.5% 205 84.0% 12.0% 96.0% 298 89.3% 10.7% 100.0% 131
South East 79.8% 18.0% 97.8% 89 84.0% 12.0% 96.0% 68 91.5% 6.8% 99.0% 59
Champlain 85.7% 11.4% 97.0% 237 89.0% 10.0% 99.0% 198 88.1% 11.1% 99.0% 135
North Simcoe Muskoka 88.6% 9.6% 98.2% 114 92.0% 4.0% 96.0% 24 79.4% 17.5% 96.0% 63
North East 79.6% 16.8% 96.4% 137 84.0% 15.0% 99.0% 158 83.3% 14.9% 98.0% 114
North West 76.2% 21.4% 97.6% 42 79.0% 15.0% 94.0% 117 72.9% 20.0% 93.0% 85

Report date: January 2018

Data source: CCO Advisor Experience Survey for On-going Engagement

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. * excludes patients who did not report any symptoms. See “Technical notes” for detailed methodology and inclusions/exclusions.

Data Table 1. Percentage of cancer patients who were screened at least once per month for symptom severity, by Regional Cancer (RCC) of screening, fiscal year 2012/2013 to fiscal year 2016/2017 Data Table 2. Symptom severity for patients with all types of cancer, all reporting Regional Cancer Centres (RCC), fiscal year 2016/2017 Data Table 3. [Theme: communication] Percentage of patients who report that their healthcare team talked to them about symptoms of concern, 2015 to 2017 Data Table 4. [Theme: communication] Percentage of patients who report that their healthcare team talked to them about symptoms of concern, by Regional Cancer Centre (RCC), 2015 to 2017 Data Table 5. [Theme: response to symptoms] Percentage of patients who report that their healthcare team treats and manages their physical symptoms, 2015 to 2017 Data Table 6. [Theme: response to symptoms] Percentage of patients who report that their healthcare team treats and manages their physical symptoms, by Regional Cancer Centre (RCC), 2015 to 2017 Data Table 7. [Theme: response to symptoms] Percentage of patients who report that their healthcare team responds to their worries, concerns or feelings of sadness, 2015 to 2017 Data Table 8. [Theme: response to symptoms] Percentage of patients who report that their healthcare team responds to their worries, concerns or feelings of sadness, by Regional Cancer Centre (RCC), 2015 to 2017 Data Table 9. [Theme: shared decision-making] Percentage of patients who report that their healthcare team includes them in decisions about how to treat and manage their symptoms, 2015 to 2017 Data Table 10. [Theme: shared decision-making] Percentage of patients who report that their healthcare team includes them in decisions about how to treat and manage their symptoms, by Regional Cancer Centre (RCC), 2015 to 2017

What do the results show?

Regional variation in uptake of PROs continues across Ontario, with several regions screening a consistent proportion of patients over time (Figure 1).

  • The PROs screening rate is an indicator that measures the uptake of YSM-General and YSM- Prostate tool amongst cancer patients.
  • The proportion of Ontario cancer patients screened for symptoms with a PRO has remained consistent at about 59% for fiscal year 2015/2016 and 58% for fiscal year 2016/2017.  
  • In total, there were 654,016 completed symptom screens in fiscal year 2016/2017, with 381,298 unique patients screened.
  • In fiscal year 2016/2017, the PROs screening rate of cancer patients ranged from approximately 39% at the Juravinski RCC to 79% in the London and North East RCCs.
  • Since fiscal year 2012/2013, the PROs screening rates of patients at the London, University Health Network/Princess Margaret Hospital, Odette, Lakeridge, Southeastern, North East and Northwestern RCCs have increased.
  • Screening rates among different age groups were shown to be statistically significant (data not shown), with patients ages 50 to 64 representing the largest percentage of those screened (60%).

Patients reported that they experienced lower symptom severity for all measured symptoms during fiscal year 2016/2017 (Figure 2).

  • In fiscal year 2016/2017, patients reported low severity (1 to 3) and high severity scores (7 to 10) for tiredness (low: 42%; severe: 12%), well-being (low: 42%; severe: 8%) and anxiety (low: 36%; severe: 6%).
  • In June 2015, the Psychosocial Oncology program at CCO released the “Exercise for People with Cancer” guideline. The guideline recommends moderate amounts of exercise to improve quality of life, and it cautions against exercise for individuals experiencing extreme fatigue [8].

The majority of patients surveyed said their healthcare team discussed their YSM – General scores with them. They felt that their physical symptoms were managed, and their worries, concerns and feelings of sadness were addressed. Patients also felt they were involved in discussions of how to treat and manage their symptoms (Figures 3 to 10).

  • Figures 3, 5, 7 and 9 display the 2015 to 2017 provincial breakdowns of responses to the question asking patients whether their healthcare team did the following:
    • Talked to them about symptoms reported on their YSM – General.
    • Treated and managed their physical symptoms.
    • Responded to their worries, concerns or feelings of sadness.
    • Included them in decisions about how to treat and manage their symptoms.
  • In 2017, 18% of all participants indicated they had never filled in a YSM – General or that they had no symptoms to report (compared to 17% in 2016) (Figure 3). Of those participants who did have symptoms to report, 63% indicated that their healthcare team always talked to them about concerning symptoms reported on their YSM – General.
  • Regional variation exists regarding patients who responded that their healthcare team always talked to them about the symptoms reported on their YSM-General, ranging from 49% (North West) to 88% (Erie St. Clair) (Figure 4).
  • In 2017, 21% of all participants indicated that they usually do not have concerning physical symptoms to report, a slight increase from 20% in 2016 (Figure 5). Of those participants who did have symptoms to report in 2017 (Figure 6), 84% indicated that their healthcare team always managed their physical symptoms (compared to 81% in 2016).
  • In 2017, 27% of all participants indicated that they usually do not have worries, concerns or feelings of sadness (Figure 7). This was the same as 2016. Of those participants who did have worries, concerns or feelings of sadness, 78% indicated that their healthcare team always responded (Figure 8).
  • In 2017, 4% of participants who indicated that they do experience symptoms reported that they prefer their healthcare team to make decisions (Figure 9). Of those participants who wanted to be included in decisions about how to treat and manage their symptoms in 2017 (Figure 10), 87% reported that their healthcare team always included them, with regional responses ranging from 73% (North West) to 96% (Central) (Figure 10).

Why is symptom screening important to patients?

  • Patients experience multiple symptoms throughout their cancer journey, and it is important for the health care team to address these symptoms. In a 2010 study of more than 45,000 Ontario patients, at least 57% reported that they experienced anxiety, 53% reported pain, 49% reported shortness of breath and 44% reported depression [1].
  • A detailed symptom assessment is needed to support improved patient outcomes and optimized resource use. A 2013 study of 45,118 Ontario patients who completed a YSM – General found that worsening symptoms contributed to emergency department (ED) visits. Poor overall well-being was associated with the highest odds of a subsequent ED visit [2].
  • Similarly, a 2014 study of more than 8,000 breast cancer patients receiving adjuvant chemotherapy found that screening with YSM – General was associated with decreased ED visits. The rate of ED visits was 43% lower among patients screened with the YSM – General tool than it was among those not screened [3].
  • A recent study assessed the overall survival associated with electronic patient-reported symptom monitoring versus usual care in the follow-up from a randomized clinical trial of 766 advanced stage cancer patients. This study found an overall survival increase for patients who had symptom monitoring. [4]

Increasing autonomy and responsiveness to care is important to the assessment and management of patient symptoms.

  • By increasing patient involvement in their own care and identifying issues earlier, validated screening tools like YSM – General can help improve the management of common cancer symptoms.
  • Patient self-reported outcomes are the gold standard for good symptom management, and 87% of patients have indicated that they find them valuable or somewhat valuable for their care.
  • Tracking symptoms over time increases a clinician’s ability to identify changes with patients and enter into a conversation about symptom management while still responding directly to needs identified by patients.

Improving communication and collaboration are important to patients.

  • Multidisciplinary cancer care means patients often are asked the same questions about their symptoms by different healthcare providers, which can be a source of frustration for some patients. 
  • Electronic symptom screening can result in a greater focus on issues that are most relevant to the experience of patients. It can also significantly improve patient outcomes, including reduced symptom distress [5, 6, 9].
  • The use of standardized patient-reported assessments may increase discussion between patients and providers [5, 10].
  • A 2011 study investigating perceptions of healthcare professionals about the use of a symptom assessment system suggested that ESAS (now known as YSM – General) screening may improve interdisciplinary communication and patient care [7].
  • Clinical decision support tools (such as symptom management guides) can help healthcare teams manage the cancer-related symptoms of patients at the point of care.

Next Steps

  • Evaluation of PRO beyond YSM – General is underway. These additional tools would give patients the opportunity to provide information about symptoms they are experiencing specific to their disease, treatments or phases of the cancer journey.
  • The symptom management program will be testing secondary screening for depression using the Personal Health Questionnaire-9 (PHQ-9). YSM-General includes a question on depression but it acts as a screening tool and is unable to capture more complex dimensions associated with this symptom (e.g. nature, duration, frequency). Addition of the PHQ-9 for patients who identify depression as an issue, would improve symptom management and appropriate referral.
  • The symptom management program is also exploring a disease-specific PRO for head and neck cancer patients.

Find out more

Notes

  1. Barbera L, Seow H, Howell D, Sutradhar R, Earle C, Liu Y, et al. Symptom burden and performance status in a population-based cohort of ambulatory cancer patients. Cancer. 2010;116:5767–76.
  2. Barbera L, Atzema C, Sutradhar R, Seow H, Howell D, Husain A, et al. Do patient-reported symptoms predict emergency department visits in cancer patients? A population-based analysis. Ann Emerg Med. 2013;61(4):427–437.
  3. Barbera L, Sutradhar R, Howell D, Atzema C, Sussman J, Seow H, et al. Does routine symptom screening with the Edmonton Symptom Assessment System (ESAS) decrease emergency department visits in breast cancer patients undergoing adjuvant chemotherapy? Support Care Cancer. 2015;23(10):3025–32.
  4. Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, Schrag D. Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. 2017;318(2):197–198. doi:10.1001/jama.2017.7156

 

  1. Berry D, Blumenstein B, Halpenny B, Wolpin S, Fann J, Austin-Seymour M, et al. Enhancing patient–provider communication with the electronic self-report assessment for cancer: a randomized trial. J Clin Oncol. 2011; 29:1029–1035.
  2. Ruland C, Holte H, Roislien J, Heaven C, Hamilton G, Kristiansen J, et al. Effects of a computer-supported interactive tailored patient assessment tool on patient care, symptom distress, and patients’ need for symptom management support: a randomized clinical trial. J Am Med Inform Assn. 2010;17:403–410.
  3. Bainbridge D, Seow H, Sussman J, Pond G, Martelli-Reid L, Herbert C, et al. Multidisciplinary health care professionals’ perceptions of the use and utility of a symptom assessment system for oncology patients. J Oncol Pract. 2011;7:19–22.
  4. Segal R, Zwaal C, Green E, Tomasone J, Loblaw A, Petrella T. Exercise for people with cancer. Cancer Care Ontario Guideline 19-5 [Internet]. 2015. Available from: here.
  5. Basch E, Deal A, Kris M, Scher H, Hudis C, Sabbatini P et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized control trial. J Clin Oncol. 2016;34(6):557–565.
  6. Homsi J, Walsh D, Rivera N, Rybicki LA, Nelson KA, Legrand SB et al. Symptom evaluation in palliative medicine: patient report vs systematic assessment. Support Care Cancer 2006;14(5):444–53.