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Symptom Burden

Key findings

Symptom burden data from 2018 showed that breast, colorectal and lung cancer patients had similar levels of anxiety, however, lung cancer patients were more likely to experience the highest level of anxiety.

Of symptom screens completed by breast cancer patients, 47% reported at least one moderate or severe symptom in 2018.

Over one-third of lung cancer patients who completed symptom screens reported moderate to severe shortness of breath. Over half of prostate cancer patients who completed symptom screens reported difficulty with their ability to reach an orgasm and 38% noted an overall problem with sexual function.

Why is this important to Ontarians?

  • Cancer Care Ontario captures patient-reported outcomes using a few tools. Two of the most common are: Your Symptoms Matter – General Symptoms and Your Symptoms Matter – Prostate Cancer.
  • Symptom screening is the identification and triage of patient symptoms. The Your Symptoms Matter tools are designed to help patients identify and report their symptoms to their healthcare teams.
  • A 2013 study of 45,118 Ontario patients who completed the general tool found that worsening symptoms contributed to emergency department visits. Poor overall well-being was associated with the highest chance of a subsequent emergency department visit.[1]
  • A recent American randomized controlled trial assessed the overall survival associated with electronic patient-reported symptom monitoring versus usual care in follow-up for 766 people with advanced stage cancer. This study found an overall survival increase for patients who had access to symptom monitoring.[2] Early real-world data from Ontario confirms this result.
  • Patient self-reported outcomes are the gold standard for good symptom management, and 87% of patients have reported that they find them valuable or somewhat valuable for their care.
  • Tracking symptoms over time increases a clinician’s ability to identify changes that may be meaningful to patients, and to enter into a conversation about symptom management.
  • Electronic symptom screening can lead to a greater focus on issues that are most important to patients. It can also significantly improve patient outcomes, including reduced symptom distress.[4] [5] [6]

See Symptom Burden Methodology for technical information.

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario

Data Table 1: Symptom severity for breast cancer patients by symptom, 2018
Symptom 0 (No Symptoms) 1-3 (Low Severity) 4-6 (Moderate Severity) 7-10 (High Severity)
Anxiety 40.2 38.7 14.0 7.0
Depression 55.6 29.7 10.0 4.7
Drowsiness 51.9 33.3 10.7 4.1
Lack of Appetite 64.4 23.3 9.1 3.2
Nausea 80.3 15.0 3.4 1.3
Pain 48.2 36.3 11.2 4.3
Shortness of Breath 66.9 24.5 6.3 2.3
Tiredness 22.2 46.2 21.8 9.7
Wellbeing 27.6 45.3 21.0 6.1

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario 

Data Table 2: Symptom severity for colorectal cancer patients by symptom, 2018
Symptom 0 (No Symptoms) 1-3 (Low Severity) 4-6 (Moderate Severity) 7-10 (High Severity)
Anxiety 45.0 36.5 13.0 5.6
Depression 58.8 27.5 9.7 4.0
Drowsiness 49.2 33.9 12.0 4.9
Lack of Appetite 56.3 27.2 11.8 4.7
Nausea 73.5 20.4 4.7 1.5
Pain 53.8 30.5 11.1 4.6
Shortness of Breath 65.2 25.2 7.0 2.6
Tiredness 24.6 44.2 21.4 9.8
Wellbeing 30.0 42.9 20.8 6.3

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario 

Data Table 3: Symptom severity for lung cancer patients by symptom, 2018
Symptom 0 (No Symptoms) 1-3 (Low Severity) 4-6 (Moderate Severity) 7-10 (High Severity)
Anxiety 37.8 35.0 17.5 9.7
Depression 50.0 29.0 14.2 6.8
Drowsiness 36.4 34.1 19.2 10.3
Lack of Appetite 44.0 26.8 17.7 11.5
Nausea 69.3 20.6 7.0 3.1
Pain 40.8 32.2 17.0 10.1
Shortness of Breath 27.8 36.2 21.7 14.3
Tiredness 15.5 37.2 28.2 19.1
Wellbeing 19.3 39.6 28.9 12.2

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario

Data Table 4: Symptom severity for prostate cancer patients by symptom, 2018
Symptom Green (0 - 1 EPIC) Yellow (2 EPIC) Red (3 - 4 EPIC)
Ability to reach orgasm 27.0 18.6 54.5
Overall problem with sexual function 49.8 12.2 38.0
Overall Urinary Function 58.4 19.4 22.2
Quality of erections 42.9 20.5 36.6
Bowel Symptom Score 86.3 6.8 6.8
Vitality/Hormonal Symptom Score 76.4 11.5 12.1
Urinary Incontinence Symptom Score 90.9 5.9 3.2
Urinary Irritation/Obstructive Symptom Score 69.8 14.8 15.4

Report date: March 2019
Data sources: Ontario Cancer Symptom Management Reporting Database, Activity Level Reporting (ALR)
Prepared by: Analytics and Informatics, Cancer Care Ontario

Results

Breast

  • The proportion of Ontario breast cancer patients screened for symptoms with Your Symptoms Matter – General is 53% for 2018. This includes 93,615 patients who completed at least 1 screen.  
  • Of symptom screens completed by breast cancer patients in 2018, 47% reported at least 1 moderate or severe symptom.
  • Approximately one-third of symptom screens from breast cancer patients reported a moderate to severe level of tiredness during treatment or follow-up.
  • Of the completed symptom screens, 7% reported severe anxiety and 5% reported severe depression.

Colorectal

  • The proportion of Ontario colorectal cancer patients screened for symptoms with Your Symptoms Matter – General is 57% for 2018. This includes 39,393 patients who completed at least 1 screen.
  • Of symptom screens completed by colorectal cancer patients in 2018, 47% had at least 1 moderate or severe symptom.
  • Seventeen percent of symptom screens from colorectal cancer patients reported a moderate to severe lack of appetite and 10% reported extreme tiredness.
  • Nearly 20% of colorectal cancer symptom screens reported moderate to severe anxiety.

Lung

  • The proportion of Ontario lung cancer patients screened for symptoms with Your Symptoms Matter – General is 58% for 2018. This includes 40,869 patients who completed at least 1 screen.  
  • Of symptom screens completed by lung cancer patients in 2018, 70% had at least 1 moderate or severe symptom.
  • Over one-third of symptom screens completed by lung cancer patients in Ontario noted a moderate to severe level of shortness of breath and nearly 20% reported severe tiredness.
  • Of lung cancer patients who reported their symptoms, 10% reported a severe level of anxiety.

Prostate

  • The proportion of Ontario prostate cancer patients screened for symptoms with Your Symptoms Matter – Prostate is 54% for 2018. This includes 15,639 patients who completed at least 1 screen.
  • Of symptom screens completed by prostate cancer patients in 2018, 67% had at least 1 symptom in the ‘red’ range (3 or 4 on a 4-point scale, with 4 being the worst).
  • Over half of prostate cancer patients with symptom screens that included a red score for ability to reach an orgasm, and 38% noted an overall problem with sexual function.
  • On over 20% of prostate cancer symptom screens, patients scored their urinary function as red.

Opportunities

  • The symptom burden data show that people with cancer experience significant symptoms and that there is a need for the healthcare team to provide high-quality, timely symptom management. Cancer Care Ontario has created materials to help clinicians provide symptom management in Ontario.
  • Visit the Cancer Care Ontario website to find symptom management guides-to-practice.
  • As a next step, Cancer Care Ontario is investigating how to measure whether quality symptom management is being provided to patients in response to symptom screening. Cancer Care Ontario is also reporting on symptom burden by region so cancer centres can identify areas for improvement at the local level.

References

  1. 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.
  2. 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
  3. Barbera L, Sutradhar R, Earle C, Mittmann N, Seow H, Howell D, Li Q, Deva T. The impact of routine ESAS use on overall survival: Results of a population-based retrospective matched cohort analysis. ASCO Meeting Library [Internet]. [Cited 2019 June DAY]; [about 2 screens]. Available from: https://meetinglibrary.asco.org/record/174647/abstract
  4. 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.
  5. 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.
  6. 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.