Ontario Health - Cancer Care Ontario's Data Book - 2024-2025

 

Updated December 2023

 

Symptom Management > Introduction

The Symptom Management Reporting Database was developed to support the goals of the Ontario Cancer Symptom Management Collaborative, which are to: promote earlier identification, documentation and communication of patient’s symptoms, optimal symptom management and collaborative care planning for patients with cancer. 

Data in the Symptom Management Reporting Database is comprised of three components: patient registration, symptom screening using patient reported outcome measures (PROMs) (e.g., Edmonton Symptom Assessment System Revised [ESAS-r], the Expanded Prostate Cancer Index Composite [EPIC]), and functional assessment using Patient Reported Functional Status (PRFS). This information is captured by participating sites using the Interactive Symptom Assessment and Collection (ISAAC) system and then submitted to the Symptom Management Reporting Database.

Patient Registration

The patient registration data is related to patient demographics and disease sites.  This information is entered once by each care site but may be updated over time.

Edmonton Symptom Assessment Scale – Revised (ESAS-r)

ESAS-r is a validated symptom screening tool.  Patients are asked to rate the severity of nine common symptoms they may be experiencing at the time of their appointment including pain, tiredness, nausea, depression, anxiety, drowsiness, lack of appetite, well-being and shortness of breath (dyspnea).  The data serves as one standard for the screening and monitoring of patients with cancer across the continuum of care.  This data may be entered directly by the patient into an ISAAC kiosk, through the ISAAC webpage remotely on a patient’s own device, or it may be recorded on paper and subsequently submitted to ISAAC by health care providers. Only one ESAS-r screen is stored in the database by the system for the same patient, site and assessment date.

Edmonton Symptom Assessment Scale- Revised + (ESAS-r+)

ESAS-r+ is a modified version of ESAS-r.  In ESAS-r+, patients with cancer are asked to rate the severity of twelve common symptoms experienced, including pain, tiredness, nausea, depression, anxiety, drowsiness, lack of appetite, well-being, shortness of breath (dyspnea), sleep, diarrhea, and constipation.  The data serves as one standard for the screening and monitoring of patients with cancer across the continuum of care.  This data may be entered directly by the patient into an ISAAC kiosk, through a link to the ISAAC webpage for remote/home channel access on a patient’s personal device ahead of their appointment, or it may be collected on paper and subsequently uploaded to ISAAC. The data can also be submitted via a site’s Electronic Medical Record, and bulk uploaded to ISAAC.  Only one ESAS-r+ screen is stored in the database by the System for the same patient, site, and assessment date. Hospitals will be transitioning from ESAS-r to ESAS-r+ from 2022/2023 to 2023/2024. Once ESAS-r+ is implemented at a site, ESAS-r will automatically be disabled.

Expanded Prostate Cancer Index Composite (EPIC)

The Expanded Prostate Cancer Index Composite (EPIC) is a validated patient-reported screening tool that was designed to measure quality of life domains (e.g., urinary incontinence, urinary irritation/obstruction, and bowel, sexual and vitality/hormonal) for patients with prostate cancer. The EPIC screening tool provides the means to capture and incorporate this patient-reported outcome data as a standard component of routine prostate cancer clinical care.

Eastern Cooperative Oncology Group (ECOG) Performance Status

ECOG Performance Status scale and criteria ECOG scale and criteria are used by healthcare providers and researchers to assess how a patient’s disease is progressing, assess how the disease affects the daily living abilities of the patient, and determine appropriate treatment and prognosis.  The ECOG scale ranges from 0 to 5: 0 - fully active; 5 - dead.

Patient Reported Functional Status (PRFS)

The PRFS is a version of the ECOG Performance Status expressed in lay language and designed to be completed by the patient. The PRFS is a patient- completed measure of performance status.  It is the activities/function domain of the Patient-Generated Subjective Global Assessment (PG-SGA) Scale, which is a widely used, well-validated measure used to screen and monitor overall nutritional status in patients with cancer. The patient's performance status is self-assessed through a single question. The PRFS scale ranges from 0 to 4:

0 - normal with no limitations

1 - not my normal self, but able to be up and about with fairly normal activities

2 - not feeling up to most things, but in bed or chair less than half the day

3 - able to do little activity & spend most of the day in bed or chair

4 - pretty much bedridden, rarely out of bed

Patient Health Questionnaire-9 (PHQ-9)

The PHQ-9 is a screening tool for assessing and monitoring depression criteria and severity.

MD Anderson Symptom Inventory - Head and Neck Cancer (MDASI - H&N)                                                            

MDASI - H&N is a screening tool to assess symptoms associated with head and neck cancers such as swallowing and speaking. It also includes an interference scale, which assesses the interference of cancer to the daily activities of the patient. The tool contains 28 questions. 

Tobacco Use Survey

The Tobacco Use Survey is used to collect information about a patient's tobacco use, including current smoking status, amount smoked and quit methods attempted (if applicable).

Voluntary Self-Identification for Indigenous Patients (VSIP)

This is a voluntary question asking patients if they self-identify as Indigenous (First Nations, Inuit or Métis). Patients may choose not to respond by selecting "I do not want to answer".