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Symptom Burden Methodology

Symptom Burden
Short description of Indicator This indicator displays symptom severity summarized for all symptom screens in the most recent available year (2018), by disease site.
Rationale for measurement
  • By increasing patients' involvement in their own care and identifying issues earlier, validated symptom screening tools, such as Edmonton Symptom Assessment Scale (ESAS), help identify common cancer symptoms that can be managed by the healthcare team.
  • Patient self-reporting of symptoms is the gold standard for symptom management, and patients have conveyed that they find it valuable for their care.
  • Tracking a patient's symptoms over time increases the clinician's ability to enter into a conversation with patients about their symptoms while responding directly to what patients have identified as their needs.
  • Before standardized symptom screening was implemented across the province, regional cancer centres did not use a standardized tool to assess symptoms.
  • Patients are telling us that they want to know and track the changes in their symptoms, making the electronic documentation of symptom scores an essential part of high-quality care.

Source: CSQI 2018

Evidence/references for rationale A retrospective study of 120,745 patients seen at regional cancer centres between 2007 and 2014 in the first year after cancer diagnosis reported that:
  • The majority of patients reported at least 1 moderate to severe score for tiredness (59%) and well-being (55%) during the study period (12 moths since diagnosis).[1] Close to half of patients also had a moderate-severe score for anxiety (44%), appetite (43%), drowsiness (39%) and pain (37%).[1] These results are important for the cancer system to consider in identifying gaps and opportunities for improvement. These results demonstrate that patients have multiple symptoms throughout their cancer journey.
  • Two temporal trends were also obsevered that highlight the importance of changing symptoms and severity over time. Many symptoms most commonly reported in the early months following diagnosis – such as anxiety, depression, pain, dyspnea, well-being, and appetite – decreased significantly in each successive month compared with the month of diagnosis.[1] Conversely, for nausea, tiredness and drowsiness, the odds of moderate-to-severe scores are highest 2 to 8 months following diagnosis rather than immediately after diagnosis, and then return to baseline or lower in months 9 to 12.[1]
  • Patients across cancer types, treatment types and phases are experiencing clinically significant symptoms that can persist for months. Routine collection of patient-reported outcomes can identify these symptoms, track symptom changes over time and ensure appropriate support is provided to each patient when they need it most. Computerized symptom screening has been shown to result in greater focus on issues that are most relevant to the patient's experience, and to significantly improve patient outcomes, including reduced symptom distress.[2]

A 2011 survey of clinical team members at a cancer centre in Ontario concluded that ESAS screening helps to improve interdisciplinary communication and enhances patient care.[3]


  1. Lev D. Bubis, Laura Davis, Alyson Mahar, Lisa Barbera, Qing Li, Lesley Moody, Paul Karanicolas, Rinku Sutradhar, and Natalie G. Coburn. (2018). Symptom Burden in the First Year After Cancer Diagnosis: An Analysis of Patient-Reported Outcomes. Journal of Clinical Oncology 2018 36:11, 1103-1111.
  2. Berry, D., Blumenstein, B., Halpenny, B., Wolpin, S., Fann, J., Austin-Seymour, M., Bush, N., Karras, B., Lober, W., McCorkle, R. (2011). Enhancing Patient-Provider Communication With the Electronic Self-Report Assessment for Cancer: A Randomized Trial. Journal of Clinical Oncology. 29:1029-1035.
  3. Ruland, C., Holte, H., Roislien, J., Heaven, C., Hamilton, G., Kristiansen, J., Sandbaek, H., Kvaloy, S., Hasund, L., Ellison, M. (2010). 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. Journal American Medical Informatics Association. 17:403-410​
Calculations for the indicator ​(Number of ESAS patient screens by Symptom, No Symptom, Low Severity, Moderate Severity and High Severity)/(Number of ESAS patient screens by Symptom)*100 = Rate

(Number of EPIC patient screens by Symptom/Symptom Domain by Green, Yellow and Red)/(Number of EPIC patient screens by Symptom Domain)*100 = Rate
Standardized Rate Calculation N/A
Unit Percentage of responses in symptom severity category
Data sources Symptom Management Database

Activity Level Reporting
Time Frame 2018
Geographic Scale Provincial
Denominator description Number of ESAS patient screens by Symptom (see 'Details of Symptom Measures' table)

Number of EPIC patient screens by Symptom (see 'Details of Symptom Measures' table)
Numerator description

Number of ESAS patient screens by Symptom (see 'Details of Symptom Measures' table) by Low Severity, Moderate Severity and High Severity

Number of EPIC patient screens by Symptom (see 'Details of Symptom Measures' table) by Low Severity and High Severity

Details of Symptom Measures
Symptom Severity ESAS Scores
No Symptoms 0
Low Severity 1, 2, 3
Medium Severity 4, 5, 6
High Severity 7, 8, 9, 10
Symptom Severity EPIC Scores
Green 0, 1
Yellow 2
Red 3, 4
Data availability & limitations Inclusions
  • Patients had at least 1 of the 4 relevant diagnoses
  • BREAST: female only, curr_diag_seer_recode_cd = 26000
  • COLORECTAL: curr_diag_seer_recode_cd = 21051 or 21052 or 2104*
  • LUNG: curr_diag_seer_recode_cd = 22030
  • PROSTATE: male only, curr_diag_seer_recode_cd = 28010
  • Patients completed at least 1 symptom screening survey within 2018. The possible symptom screening surveys included ESAS for Breast, Colorectal, and Lung or EPIC for Prostate. A unique patient may have 1 or more than 1 response to symptom screening surveys contributing to the indicator, depending on how many times they completed the screening within 2018.

    * Indicates a wildcard number, meaning all codes starting with 2104 are categorized as colorectal

The following exclusions were made to the patient cohort prior to selecting symptom screening surveys:

  • Patients with missing or invalid Health Card Numbers
  • Patients with multiple primaries are excluded by examining all possible diagnoses within 5 years before to 1 year after the diagnosis date of the disease site in question
  • Age must be over 18 at the time of survey

The following exclusions were applied to the symptom screening surveys:

  • Survey date must be within January 1, 2018 to December 31, 2018

Survey date must be within 365 days after the diagnosis date or within 180 days before the diagnosis date