Symptom Assessment and Management

Measure	Desired Direction	As of this Report
Percentage of cancer patients screened at least once per month for symptoms
Percentage of patients who report that their health care team talked to them about symptoms of concern
See Methodology and Approach to find out how the ratings are calculated.

Key findings

Cancer Care Ontario collects data on patient symptom screening using Your Symptoms Matter – General Symptoms (formerly known as the Edmonton Symptom Assessment System, or ESAS).

The percentage of patients who are screened for symptoms using Your Symptoms Matter – General Symptoms (YSM-General) has increased from 50% in 2011 to 61% in 2016. Three of 14 regional cancer centres are exceeding Cancer Care Ontario’s target YSM-General screening rate of 70%. In total, 383,023 unique patients were screened using YSM-General in 2016.

Fifty-three percent (53%) of patients surveyed in 2016 said that their health care team always discussed their YSM-General scores with them, which is similar to the rate in 2015 (55%).

What is symptom screening?

In my words 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

• Symptom screening is the identification and triage of patient symptoms. Your Symptoms Matter – General Symptoms (YSM-General, which is formerly known as the Edmonton Symptom Assessment System, or ESAS) is a tool designed to help patients identify and report their symptoms to their health care team. 
• YSM-General asks patients to rate the severity of 9 symptoms commonly experienced by cancer patients, and includes physical symptoms (such as pain, shortness of breath, appetite and fatigue), as well as emotional symptoms (such as depression and anxiety). It also assesses the overall well-being of patients. 

How is 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. 
• December 2016 to January 2017, 3,653 patients from the 14 regional cancer centres were surveyed.

What do the results show?

Regional variation in YSM-General uptake continues across Ontario, with several regions screening a lower percentage of patients than in previous years (Figure 1).

• The YSM-General screening rate is an indicator that measures the uptake of the YSM-General amongst cancer patients. 
• The proportion of Ontario cancer patients using YSM-General has increased from about 50% in fiscal year (FY) 2014/15 to 61% in FY 2015/16.
• In total, 632,200 screenings occurred using YSM-General with 383,023 unique patients screened in 2016.
• In 2016, the screening rate of cancer patients completing YSM-General ranged from approximately 40% in the Juravinski regional cancer centre to 82% in the North East regional cancer centre. 
• From 2011 to 2016, YSM-General use increased substantially at Princess Margaret Cancer Centre from 15% to 55%. 
• From 2011, the screening rates of patients completing YSM-General at Odette, Lakeridge and North West Cancer Centres all increased.
• Additional analyses showed there are no large differences in screening rates between the genders (data not shown). The screening rates amongst different age groups appears similar, with patients over 80 years old screening slightly less often.

Patients reported that they experienced higher symptom severity for tiredness, well-being and anxiety (Figure 2).

• Patients reported moderate severity scores (4–6) and high severity scores (7–10) for tiredness (moderate: 23%; severe: 12%), well-being (moderate: 22%; severe: 8%) and anxiety (moderate: 14%; severe: 7%) in FY 2015/16. These results are consistent with symptom profiles reported in previous years. 
• The Psychosocial Oncology program at CCO released the “Exercise for People with Cancer” guideline in June 2015. The guideline recommends moderate amounts of exercise to improve quality of life, and cautions against exercise for individuals experiencing extreme fatigue⁷. 

The majority of patients surveyed said their health care 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 3-10).

• Figures 3, 5, 7, 9 display the 2014 to 2016 provincial breakdowns by response to the question asking patients whether their health care team:
  • talked to them about symptoms reported on their YSM-General;
  • treats and manages their physical symptoms;
  • responds to their worries, concerns or feelings of sadness; and 
  • includes them in decisions about how to treat and manage their symptoms.
•  In 2016, 17% of all participants indicated they had never filled in an YSM-General or they had no symptoms to report (compared to 16% in 2015) (Figure 3). Of those participants who did have symptoms to report, 64% indicated that their health care team always talked to them about concerning symptoms reported on their YSM-General. Regional variation exists regarding patients responding that their health care team always talks to them about their symptoms from their YSM-General scores, ranging from 52% (Toronto Central North and South) to 83% (Erie St. Clair) (Figure 4). 
• In 2016, 20% of all participants indicated that they usually do not have concerning physical symptoms to report, which was the same as 2015 (Figure 5). Of those participants who did have symptoms to report in 2016 (Figure 6), 81% indicated that their health care team always managed their physical symptoms (compared to 83% in 2015).
• In 2016, 27% of all participants indicated that they usually do not have worries, concerns or feelings of sadness (Figure 7), which is similar to 2015. Of those participants who did have worries, concerns or feelings of sadness, 77% indicated that their health care team always responds (Figure 8).
• In 2016, 5% of participants who indicated that they do experience symptoms reported that they prefer their health care 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 2016 (Figure 10), 85% reported that their health care team always includes them, with regional responses ranging from 79% (Mississauga/Halton/North West) to 94% (Erie St. Clair) (Figure 10).

Why is symptom screening important to patients?

• Patients have multiple symptoms throughout their cancer journey, and it is important for the cancer system to consider these symptoms when identifying gaps in care and opportunities for improvement. 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 depression1. 
• 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 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 visit2. 
• 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 YSM-General compared to those not screened3.

Increasing autonomy and responsiveness to care is important to patients’ symptom assessment and management.

• 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 it valuable/somewhat valuable for their care.
• Tracking symptoms over time increases the clinician’s ability to identify changes with their patients and enter into a conversation about symptom management, while still responding directly to what patients have identified as their needs.

Improving communication and collaboration are important to patients.

• Multidisciplinary cancer care means patients often are asked the same questions about their symptoms by different health care providers, which can be a source of frustration for some patients.
• Electronic symptom screening can 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^4,5,8. 
• The use of standardized patient-reported assessments may increase discussion between patients and providers^4,9. 
• A 2011 study investigating perceptions of health care professionals about the use of a symptom assessment system suggested that ESAS (YSM-General) screening may improve interdisciplinary communication and patient care⁶.
• Clinical decision support tools (such as the Symptom Management Guides) can help health care teams manage the patient’s cancer-related symptoms at the point-of-care.

Next steps for symptom assessment and management in Ontario

• New work in symptom management has begun that includes testing and implementing additional PRO tools beyond the current YSM-General. These tools would allow patients the opportunity to provide information about symptoms they are experiencing specific to their disease, treatments or phases of the cancer journey.
• In 2013, the Symptom Management Program added a new PRO to the Your Symptoms Matter (YSM) platform  This tool is called the YSM-daily activities (formerly Patient Reported Functional Status), and 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. 
• In 2016, the Symptom Management Program began implementing the first disease-specific and symptom-specific PROs, called Your Symptoms Matter – Prostate Cancer, which assists patients who have a unique symptom profile that includes sexual dysfunction and incontinence.

Find out more

• For more information about symptom assessment, visit the OCSMC page on Cancer Care Ontario’s website. 
• For more information on Oncology Patient Experience Surveys, please view information regarding the Ambulatory Oncology Patient Satisfaction Survey.

View 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 [Epub ahead of print].
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. 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.
7. Segal R, Zwaal C, Green E, Tomasone J, Loblaw A, Petrella T. Exercise for People with Cancer. Cancer Care Ontario Guideline 19-5. 2015.
8. 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.
9. 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.