Symptom Assessment Tools: Your Symptoms Matter

There are two tools to measure general symptoms:

1. Your Symptoms Matter – General Symptoms
2. Your Symptoms Matter – General Symptoms+

Your Symptoms Matter – General Symptoms uses the validated Edmonton Symptom Assessment System – revised (ESAS-r) to screen for 9 symptoms commonly experienced by people with cancer. YSM - General Symptoms+ is a modified version that includes all the symptoms in ESAS-r and three additional symptoms (constipation, diarrhea, and sleep).

The assessment tools are slightly modified versions of the original tool developed by the Regional Palliative Care Program, Capital Health in Edmonton, Alberta.

Accessing Your Symptoms Matter – General Symptoms and Symptoms+

These downloadable tools are designed to assist healthcare providers and patients in the assessment and management of a variety of symptoms, including:

The severity of each symptom at the time of assessment is rated from 0 to 10 on a numerical scale – 0 meaning the symptom is absent and 10 that it is the worst possible severity. One blank scale is available for patients to identify and assess an “other problem” as needed.

The tools can be downloaded here:

Purpose of the Your Symptoms Matter Tools- General Symptoms & General Symptoms+

These tools can help patients, family, or their caregivers capture how they are feeling based on commonly experienced cancer symptoms. The intended outcome is to help patients communicate the impact of cancer and treatments on their health status and quality of life.

The assessment tool provides a clinical profile of symptom severity over time and establishes a context for understanding symptoms. For optimal symptom management, the tool should be used as a component of a holistic clinical assessment.

How to Complete the Your Symptoms Matter – General Symptoms & General Symptoms+

Patients can complete Your Symptoms Matter in three ways:

1. In-Person Electronically
2. Using a Personal Device
3. Using Paper

In-Person Electronically

On-site patients enter their symptom score information via a kiosk, tablet, or desktop using an online system, Interactive Symptom Assessment and Collection (ISAAC). The tools are available in French and English on ISAAC.

The symptom scores entered in ISAAC are stored electronically. A histogram (bar graph) outlining the patient’s symptom scores over time can be printed out for review by the clinician at the visit. Some centres include the histogram in the patient’s medical chart. Some sites also store the scores via medical electronic record.

Using a Personal Device

Patients are also able to access the Your Symptoms Matter tools on their personal device such as a mobile phone, tablet, or desktop computer at https://isaac.ontariohealth.ca/

Paper

If using the paper option, the patient circles the most appropriate number to indicate how they are feeling according to each symptom scale (e.g., no pain to worst possible pain).

Clinic staff then transcribe the circled number onto the medical chart (e.g., flow sheet) or graph the ESAS-r form and place it in the medical chart; paper scores can be manually uploaded to the electronic option of the tool.

Words That Help Describe Symptoms

Some symptoms can be difficult to describe or rate. Here are alternative word choices:

• Depression – sad or blue
• Anxiety – nervousness or restlessness
• Tiredness – decreased energy level (but not necessarily sleepy)
• Drowsiness – sleepiness
• Well-being – overall comfort, both physical and otherwise; truthfully answering the question “How are you?”

When to Complete Your Symptoms Matter – General Symptoms

• Patients visiting a cancer centre – Patients are encouraged to complete Your Symptoms Matter – General Symptoms before each of their visits to the cancer centre, or as otherwise suggested by their healthcare team. Ultimately, the tool helps patients express how they are feeling and the symptoms that are most important to them at any given time.
• At home before cancer centre visit – Some centres offer patients the option to complete Your Symptoms Matter – General Symptoms from home. Patients can access their symptom screening tools by visiting the Your Symptoms Matter.

Who Fills Out Your Symptoms Matter – General Symptoms

Ideally, patients fill out their own questionnaire, either using the paper-based or electronic version of the tool. However, if the patient is unable to independently complete Your Symptoms Matter – General Symptoms, then a caregiver (a family member or friend) or health professional closely involved with the patient’s care may assist.

Where to Document Your Symptoms Matter – General Symptoms

If the questionnaire is filled out using the electronic version of the tool, the information is automatically stored in the Your Symptoms Matter system (formerly Interactive Symptom Assessment and Collection, or ISAAC). From there, a histogram can be printed out for the medical chart.

If the questionnaire is completed on paper, clinic staff can manually enter scores into the system or transcribe them into the medical chart.

Your Symptoms Matter – Daily Activities uses the Patient Reported Functional Status (PRFS) assessment tool. The PRFS asks patients to rate their functional status over a month through a single question on a 5-point scale. It is a version of the ECOG (Eastern Cooperative Oncology Group) Performance Status scoring system, but is presented in simple language and designed to be completed by the patient. The PRFS is unique among functional status tools in that it is patient-reported, leading to higher understanding of a patient’s condition.

Accessing Your Symptoms Matter – Daily Activities

A patient’s functional status helps assess the disease progression and how it may be affecting the patient’s daily living. The scale ranges from “normal with no limitations” to “bedridden (rarely out of bed).” The assessment is available in 2 formats: paper or electronic.

Paper Option

The paper option is available to healthcare providers and patients in many languages. Please select the language you would like to use.

Electronic Option

Patients can complete the assessment electronically using the Your Symptoms Matter system. Your Symptoms Matter is available at kiosks, tablets or desktops in 14 regional cancer centres and 62 partner hospitals across Ontario. Patients simply select the options on the display to enter their responses.

Purpose of Your Symptoms Matter – Daily Activities

The assessment tool allows patients to communicate their functional status to their healthcare team. Patients are asked to rate their general activity level over the past month by choosing from 5 different response options.

Functional status is an indicator of a patient’s health. Changes over time can help predict survival. PRFS scores also help clinicians:

• formulate care plans for patients
• determine appropriate treatment
• facilitate appropriate referrals to allied health professionals, such as palliative care or Community Care Access Centres

How to Complete Your Symptoms Matter – Daily Activities

If using the paper option, the patient places an “X” or checkmark beside the most appropriate response. Clinic staff then transcribe the score onto the medical chart, or places the PRFS form in the medical chart. Paper scores can be manually uploaded to the electronic version of Your Symptoms Matter.

The electronic option uses the Your Symptoms Matter platform, formerly known as ISAAC (Interactive Symptom Assessment and Collection). Patients enter their functional status on the Your Symptoms Matter system via a kiosk, tablet or desktop. Your Symptoms Matter – Daily Activities is available on the system in French and English.

The self-assessments entered in Your Symptoms Matter are stored electronically. They can be printed out to review and to include in the patient’s medical chart.

When to Complete Your Symptoms Matter – Daily Activities

• Patients are prompted to complete the Your Symptoms Matter – Daily Activities after they complete Your Symptoms Matter – General Symptoms.
• Patients are encouraged to complete Your Symptoms Matter – General Symptoms and Your Symptoms Matter – Daily Activities before every visit, or as instructed by clinic staff.

Your Symptoms Matter – Prostate Cancer is the revised version of the Expanded Prostate Cancer Index Composite (EPIC). The questionnaire is a valid assessment tool designed to assess health-related quality of life in early-stage prostate cancer patients. It screens for 5 major domains, including bowel, sexual function, urinary irritation, urinary obstruction and hormonal/vitality symptoms.

Patients can report their questionnaire scores electronically at many regional cancer centres using the Your Symptoms Matter platform.

Paper Option

The paper option is available to healthcare providers and patients in many languages. Please select the language you would like to use.

Electronic Option

Patients can complete the assessment electronically using the Your Symptoms Matter system. Your Symptoms Matter is available at kiosks, tablets or desktops in 14 regional cancer centres and 62 partner hospitals across Ontario. Patients simply select the options on the display to enter their responses.

The electronic option of Your Symptoms Matter is commonly referred to as ISAAC. This Interactive Symptom Assessment & Collection tool allows patients to report and monitor their symptoms online.

Your Symptoms Matters is available at kiosks in all 14 regional cancer centres and 62 partner hospitals across Ontario. More than 30,000 patients are screened at regional cancer centres every month through the system.

If you are a patient and are not sure whether your centre or hospital provides patient access to Your Symptoms Matter, please ask your doctor.

Your Symptoms Matter Overview

Your Symptoms Matter is a web-based symptom screening platform from Cancer Care Ontario. It facilitates the administration of patient-reported symptom screening, and gives healthcare providers the ability to monitor patients’ symptoms. Using Your Symptoms Matter, patients can log in and report on their symptoms (for example, anxiety level is “3” on a scale of 0 to 10). Healthcare teams can view this information and use it to adjust a patient’s care plan.

If the patient’s symptom scores were recorded on paper, sometimes the healthcare team will manually upload them to the online system.

Key Features and Functions of Your Symptoms Matter

• An accessible, electronic platform allows for the completion of patient-reported symptom measurement tools
• A reporting tool for both patients and healthcare professionals to facilitate improved communication by enabling patients to track and report commonly experienced cancer symptoms
• A customizable alert system that notifies appropriate healthcare professionals when symptom scores exceed certain thresholds, indicating a need for clinical intervention
• The capability to expand functionality by including additional patient-reported outcome measures, which will allow for more personalized symptom assessments

How Your Symptoms Matter Works

Patients rate the severity of their symptoms by entering their individual scores electronically via kiosks, tablets or desktops at their cancer centres, or from home on their internet-accessible computers.

The symptom scores entered in Your Symptoms Matter are reviewed by each patient’s care team, who can use the information to manage the patient's symptoms more effectively and efficiently.

Three symptom questionnaires are available through Your Symptoms Matter:

• Your Symptoms Matter – General Symptoms uses the Edmonton Symptom Assessment System (ESAS-r) to address 9 common symptoms including pain, nausea and anxiety. ESAS-r scores are reported over time, and include scores entered both at the cancer clinic and at home. That means the patient's symptom severity scores are tracked over time and across healthcare settings.
• Your Symptoms Matter – Daily Activities uses the Patient-Reported Functional Status (PRFS) tool, and asks patients to use a 5-point scale to indicate how well they are functioning and their current activity levels.
• Your Symptoms Matter – Prostate Cancer uses the Expanded Prostate Cancer Index Composite (EPIC). It screens early-stage prostate patients for 5 major domains, including bowel, sexual function, urinary irritation, urinary obstruction and hormonal/vitality symptoms.

Your Symptoms Matter can notify the patient’s care team by email when a patient’s score exceeds a specified threshold (e.g., severe score). This means clinicians can take appropriate steps to help patients manage their symptoms efficiently, including referrals to specialized services (such as dietitians, psychologists, social workers, etc.) when needed:

Symptom management tools (including guides-to-practice, algorithms) help clinicians assess and appropriately manage a patient’s symptoms.

Cancer Care Ontario provides Your Symptoms Matter to participating hospitals and Community Care Access Centres in its role as a “health information network provider” under the Ontario Personal Health Information Protection Act, 2004.

For information about privacy and using Your Symptoms Matter, see the Your Symptoms Matter Privacy Frequently Asked Questions.

If a patient wishes to withdraw their personal information and historical responses from ISAAC:

1. The patient can contact the hospital registration desk to withdraw from ISAAC.
2. The registration desk staff will notify the hospital’s ISAAC administrator(s).
3. The hospital’s ISAAC administrator(s) can then notify the ISAAC product team by sending email to the ISAAC mailbox.
4. The ISAAC product team will remove all requested data and records in the ISAAC production database.
5. The hospital or clinic will retain the data in accordance with its records retention policy.

Patients should talk to a member of their healthcare team if they would like to see or change their past symptom scores.