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1 CCO DataBook Symptom Management Published for Cancer Care Ontario s Partner Organizations THIS DOCUMENT CONTAINS PROPRIETARY INFORMATION
2 Table of Contents Symptom Management > Introduction... 1 Patient Registration... 1 Edmonton Symptom Assessment System Data... 1 Palliative Performance Scale Data... 1 Population Data... 2 Symptom Management > ESAS... 3 Symptom Management > Patient... 6 Symptom Management > Population...12 Symptom Management > PPS...14 ii
3 Symptom Management > Introduction The Symptom Management Reporting Database was developed in order to help assess the goals of the Ontario Cancer Symptom Management Collaborative and the Palliative Care Program which are to: promote earlier identification, documentation and communication of patient s symptoms, optimal symptom management and collaborative care planning for patients who require palliative care services. Symptom Management Reporting Database data is comprised of four components: patient registration, symptom screening using the Edmonton Symptom Assessment System (ESAS), functional assessment using the Palliative Performance Scale, and population data. 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. Edmonton Symptom Assessment System Data The Edmonton Symptom Assessment System (ESAS) is a validated symptom screening tool. Patients are asked to rate the severity of nine common symptoms experiences by patients, including pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. These patients include both palliative and curative intent oncology patients. 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 a secure website or it may be recorded on paper and subsequently entered into ISAAC by health care providers. This data may be entered up to one time per day at the hospital or from home. Palliative Performance Scale Data The Palliative Performance Scale (PPS) is a reliable and valid tool developed by the Victoria Hospice Society to assess a patient s functional performance. The PPS provides a means of determining categories for generic care plans: 1
4 ISAAC PPS Score of (Stable); PPS Score of (Transitional); and PPS Score of 0-30 (End-of-Life). This tool is administered by a clinician and may be completed at each contact between the patient and the cancer centre. Population Data Population data provides information on the total number of patients by disease group and treatment intent, seen at the cancer centre. This data allows indicators that measure the percent of patients who have been screened or assessed with ESAS or PPS. 2
5 Symptom Management > ESAS ESAS Patient Chart Patient identifier code CHAR 10 Consistent with CIHI Uniquely identifies a patient within an Number that is unique within Alpha-numeric NACRS and DAD ICP. Necessary to determine a case. the healthcare facility. definition and format. Foundational to most measures and indicators. ESAS CIHI Master MOHLTC Master CHAR 4 Same as CIHI s Uniquely identifies the hospital Number Number identifying Institution Number for reporting this patient. the hospital site NACRS or DAD where this visit submissions, but does not occurred. include CIHI s provincial identifier digit. ESAS Health Card Patient s most recent CHAR 12 The following values are Used to further identify unique patients Number health insurance Alpha-numeric only to be used when and link to existing databases as well number assigned by unable to provide a as determine if same patients are their provincial Health Card Number. being treated across CCACs and cancer government of residence. 0-insured resident of reporting province, but HCN not available. centres. Will facilitate the linkage of the CCAC and hospital results. In addition, CCACs may use this number as their unique patient identifier. 1=not applicable, includes: out of province resident with unavailable HCN, Out of Country, no 3
6 ISAAC health insurance coverage from province of residence. ESAS Assessment Date Date assessment completed YYYYMMDD Valid dates only Necessary to track patient changes over time ESAS Form Completed By The person completing the assessment CHAR 1 C - Clinician P - Patient F - Family/friend ESAS Pain Patient perception of pain 0,1,2,3,4,5,6,7,8,9,10 ESAS Tired Patient perception of tiredness 0,1,2,3,4,5,6,7,8,9,10 ESAS Nausea Patient perception of nausea 0,1,2,3,4,5,6,7,8,9,10 ESAS Depression Patient perception of 0,1,2,3,4,5,6,7,8,9,10 4
7 Symptom Management > Population depression ESAS Anxious Patient perception of anxiety 0,1,2,3,4,5,6,7,8,9,10 ESAS Drowsy Patient perception of drowsiness 0,1,2,3,4,5,6,7,8,9,10 ESAS Appetite Patient perception of appetite 0,1,2,3,4,5,6,7,8,9,10 ESAS Well Being Patient perception of well being 0,1,2,3,4,5,6,7,8,9,10 ESAS Dyspnea Patient perception of shortness of breath 0,1,2,3,4,5,6,7,8,9,10 ESAS Assessment Location where ESAS 0 HP - Home - Paper Required to measure where Location assessment took place Alpha-numeric CP - Clinic - Paper assessments are occurring for planning for electronic tool HE - Home - Electronic 5
8 ISAAC CE - Clinic - Electronic CT - Clinic - Telephone Symptom Management > Patient Patient Patient Chart Number Patient identifier code that is unique within the healthcare facility. CHAR 10 Alpha-numeric Consistent with CIHI NACRS and DAD definition and format. Uniquely identifies a patient within an ICP. Necessary to determine a case. Foundational to most measures and indicators. Patient Submitting Facility Number MOHLTC facility number of the healthcare facility where this patient is registered. CHAR 4 Valid MOHLTC facility numbers only. Same 3-digit number that is used for MIS submissions. An additional Used to track results by facility. leading zero is acceptable. For current valid MOHLTC facility numbers, See Appendix A 6
9 Symptom Management > Population Patient CIHI Master Number MOHLTC Master Number identifying the hospital site where this visit occurred. CHAR 4 Same as CIHI s Institution Number for NACRS or DAD submissions, but does not include CIHI s provincial Uniquely identifies the hospital reporting this patient. identifier digit. Patient CCAC Nursing Agency Name of the agency CHAR 40 Truncate if name longer than Used to identify nursing agency providing homecare 40 characters. (text field) so that CCACs who are staging services to patient implementation by nursing agency can calculate agency specific rates Patient Patient Surname Patient surname. CHAR 50 Truncate if name longer than 50 characters. Used to further identify unique patients and link to existing databases as well as determine if same patients are being treated across CCACs and cancer centres. Will facilitate the linkage of the CCAC and hospital results. 7
10 ISAAC Patient Patient First Name Patient first given name. CHAR 40 Truncate if name longer than 40 characters. Used to further identify unique patients and link to existing databases as well as determine if same patients are being treated across CCACs and cancer centres. Will facilitate the linkage of the CCAC and hospital results. Patient Patient Gender Patient gender. CHAR 1 M = Male, F = Female, O = Other (transsexual, hermaphrodite). As per CIHI NACRS definition. Used to further identify unique patients and link to existing databases as well as determine if same patients are being treated across CCACs and cancer centres. Will facilitate the linkage of the CCAC and hospital results. Patient Patient Birth Date Patient birth date. YYYYMMDD Valid dates only. For analyses involving patient age and linking to other CCO databases. 8
11 Symptom Management > Population Patient Health Card Number Patient s most recent CHAR 12 Submit a zero for patients who Used to further identify unique health insurance number Alpha-numeric are covered by OHIP but whose patients and link to existing assigned by their health number is not available databases as well as determine provincial government of at time of registration. Leave if same patients are being residence. blank if not covered by a treated across CCACs and Canadian provincial health cancer centres. Will facilitate plan. the linkage of the CCAC and The following values are only to be used when unable to provide a Health Card Number. hospital results. In addition, CCACs may use this number as their unique patient identifier. 0-insured resident of reporting province, but HCN not available. 1=not applicable, includes: out of province resident with unavailable HCN, Out of Country, no health insurance coverage from province of residence. 9
12 ISAAC Patient Health Card Version Version number of the As per MOHLTC OHIP rules. Used to further identify unique patient s most recent Leave blank for non-ohip patients and link to existing provincial health card. patients. databases as well as determine if same patients are being treated across CCACs and cancer centres. Will facilitate the linkage of the CCAC and hospital results. In addition, CCACs may use this number as their unique patient identifier. Patient Patient Postal Code Patient s postal code of CHAR 10 Can be left blank if residence Used to further identify unique their home address on outside of Canada or US. patients and link to existing the date of this visit. Canadian postal codes must be in the format ANANAN (no space), where A is a letter and N is a number. For US zip codes, either NNNNN or NNNNN-NNNN. CIHI s twoletter province/ state codes are also acceptable if full code not databases as well as determine if same patients are being treated across CCACs and cancer centres. Will facilitate the linkage of the CCAC and hospital results. In addition, CCACs may use this number as their unique patient identifier. known. Patient Disease Groups Clinical Practice Group CHAR 3 For valid Disease Groups See Appendix 11, Section 1 Lu-Lung is a mandatory value for lung patients only. Used to differentiate the various targeted patient populations by disease group. 10
13 Symptom Management > Population Patient Intent of Treatment Intent of Treatment is CHAR 1 C=Curative Used to determine the stage of curative, palliative or undefined P=Palliative U=Undefined the patient. See Appendix 11, Section 2 for definitions of each term Patient Patient Type Type of patient used for CHAR 6 Home Used to differentiate the CCAC sites only Alpha numeric = CCAC code 94 or 95 cancer patient various targeted patient populations. HomeOC = CCAC Other cancer patient Patient Site Specific Free text field for site CHAR 40 specific information 11
14 ISAAC Symptom Management > Population Population ** CIHI Master MOHLTC Master CHAR 4 Same as CIHI s Institution Used to identify specific site Number Number identifying the hospital site where this Number for NACRS or DAD submissions, but does not for multi-site facilities visit occurred. include CIHI s provincial identifier digit. Population ** Disease Groups Clinical Practice Group CHAR 3 For valid Disease Groups See Appendix 11, Section 1 Used to differentiate the various targeted patient populations by disease group Population ** Intent of Treatment Intent of Treatment is CHAR 1 C=Curative Used to determine the stage curative, palliative or undefined P=Palliative of the patient. U=Undefined See Appendix 11, Section 2 for definitions of each term Population ** Site Specific Free text field for site CHAR 40 specific information 12
15 Symptom Management > Population Population ** Month The month related to CHAR3 For valid values and Allows monthly indicators to the total number of descriptions See Appendix 11, be calculated patients seen in patient Section 3 population. Population ** Year The year related to the CHAR 4 Year must be greater than or Allows monthly indicators to total number of patients seen in patient equal to 2006 be calculated population. Population ** Total Number of Total number of CHAR 7 Used for calculating monthly Patients patients that are indicators currently being seen in patient population (see disease group) 13
16 Symptom Management > PPS PPS Patient Chart Patient identifier code CHAR 10 Consistent with CIHI NACRS and Uniquely identifies a patient Number that is unique within Alpha- DAD definition and format. within an ICP. Necessary to the healthcare facility. numeric determine a case. Foundational to most measures and indicators. PPS CIHI Master MOHLTC Master CHAR 4 Same as CIHI s Institution Number Uniquely identifies the hospital Number Number identifying the for NACRS or DAD submissions, reporting this patient. hospital site where this but does not include CIHI s visit occurred. provincial identifier digit. PPS Health Card Patient s most recent CHAR 12 The following values are only to be Used to further identify unique Number health insurance Alpha- used when unable to provide a patients and link to existing number assigned by numeric Health Card Number. databases as well as their provincial government of residence. 0-insured resident of reporting province, but HCN not available. determine if same patients are being treated across CCACs and cancer centres. Will 1=not applicable, includes: out of province resident with unavailable HCN, Out of Country, no health insurance coverage from province of residence. facilitate the linkage of the CCAC and hospital results. In addition, CCACs may use this number as their unique patient identifier. 14
17 Symptom Management > PPS PPS Assessment Date Date assessment completed YYYYMMDD Valid dates only Necessary to track patient changes over time PPS PPS Score Standard score on PPS scale CHAR 3 0,10,20,30,40,50,60,70,80,90,100 Use to identify which patients will be required to be referred to a palliative care team (score less than 40) PPS Assessment Location where PPS 0 HP - Home - Paper Required to measure where Location assessment took place Alphanumeric CP - Clinic - Paper HE - Home - Electronic assessments are occurring for planning for electronic tool CE - Clinic - Electronic CT - Clinic - Telephone 15
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