Symptom Assessment and Management
Measure: Percentage of cancer patients screened at least once per month for symptoms
As of this Report:
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
As of this Report:
- 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
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 .
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 .
- 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 .
- 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 .
- 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. 
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 .
- 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.
- 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
- For more information about symptom assessment, visit the Ontario Cancer Symptom Management Collaborative (OCSMC) page on Cancer Care Ontario’s website.