| Ontario Health - Cancer Care Ontario's Data Book - 2021-2022 |
|
Updated October 2020
The Symptom Management Reporting Database was developed to help assess 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 cancer patients. The Symptom Management Reporting Database data is comprised of three components: patient registration, symptom screening using patient reported outcomes (PROMs) such as Edmonton Symptom Assessment System Revised (ESAS-r) or the Expanded Prostate Cancer Index Composite (EPIC), and functional assessment using the Eastern Cooperative Oncology Group Performance Status and/or Patient Reported Functional Status. This information is captured by participating sites using the Interactive Symptom Assessment and Collection (ISAAC) system and then submitted on a monthly basis to the Symptom Management Reporting Database.
Patient Registration
The patient registration data provides data related to patient demographics and disease site. This information is entered once by each care site, but may be updated over time.
ESAS-r
ESAS-r is a validated symptom screening tool. Patients are asked to rate the severity of nine common symptoms experienced by patients, including pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. The data serves as one standard for the screening and monitoring of cancer patients across the continuum of care. This data may be entered directly by the patient into an ISAAC kiosk, through the ISAAC webpage, or it may be recorded on paper and subsequently submitted to ISAAC by health care providers. The System will store in the database only one ESAS-r screen for the same patient, site and assessment date.
EPIC
EPIC is a validated patient-reported instrument that was designed to measure urinary incontinence, urinary irritation, and the bowel, sexual and hormonal health related quality of life domains for patients with prostate cancer. The EPIC 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 doctors, and researchers and clinicians 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 is 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 patient's performance status is self-assessed through a single question. The PRFS scale is 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
Additional PROMs and Surveys
Data associated with the following patient reported outcome measures and surveys are planned for collection in the 2020/21 fiscal year in a pilot setting at a few centres.
Patient Health Questionnaire-9 (PHQ-9)
The PHQ-9 is an instrument for assessing and monitoring depression criteria and severity. It has gained increased use in both research and clinical practice, with confirmed sensitivity to change.
MD Anderson Symptom Iventory - Head and Neck Cancer (MDASI - H&N)
MDASI - H&N is a measure to assess symptoms specifically associated with head and neck cancers such as swallowing, speaking etc. It also includes an interference scale. The measure is 28 questions long.
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".