BORN Ontario: NSO DERF Training Guide FEBRUARY 2012

BORN Ontario: NSO DERF Training Guide FEBRUARY 2012

NSO DERF Encounter NSO sends newborn screening records to the BORN Information System (BIS) regularly throughout each day. When a risk letter is printed, the record that is sent to BORN indicates that the infant is screen positive. This creates a Diagnostic Evaluation Report Form (DERF) encounter in the BIS for each screen positive infant that is referred to a Regional Treatment Centre. The NSO DERF encounter allows for the collection of patient data, including retrieval confirmation and status, investigation and diagnostic information and family history. 2

Training Objectives At the end of this session, you will be able to create and update an NSO DERF and understand the tabs within this encounter: Patient Information Retrieval Confirmation Retrieval & Clinical Status Diagnostic Evaluation Definitive Diagnosis & Family History Retrieval Centre Details Summary BORN URL: https://my.bornontario.ca 3

NSO DERF Encounter Getting Started NSO DERF SEARCH 4

NSO DERF Search Determination ID: The unique number assigned by NSO to each screen positive result. an infant who screens positive for more than one disease will have a determination ID for each disease The 5 digit Determination ID will be found on the risk letter: 5

NSO DERF Search For NSO DERF users, there is an option to search directly for the DERF via the Determination ID, if known To access the NSO DERF Search, click on NSO DERF Search from the top navigation bar 6

NSO DERF Search Enter the Determination ID and click on Search 7

NSO DERF Search If the Determination ID exists in the system, it will be displayed for the user to select. When the user selects the Determination ID, they will be taken directly to being data entry for the NSO DERF 8

Demo NSO DERF Clinical Scenario Baby Girl Smyth was born June 6, 2011 at 26 weeks 3 days gestation weighing 1021 grams. She screened positive for CAH (for example Determination ID 65874). Screening 17OHP was 101. 9

Demo NSO DERF Search Login to BORN UAT, and select your applicable organization Select NSO DERF Search from the top navigation menu Enter a Determination ID and click on Search Select the appropriate search result to begin data entry 10

NSO DERF Encounter Getting Started ENCOUNTER DATA ENTRY 11

NSO DERF Encounter Patient Information Screen This screen is used to document Patient Information. Note: All information on this page is prepopulated with information from the patient s NSO screening. There are no fields that requires data entry. If information on this tab that does not match what was sent in the referral package, please contact NSO at 613 737 7600x1045 for further investigation. However, if the patient identifiers are correct and the section currently entering DERF for contains the correct disease, you can still proceed with DERF entry, even if other information appears to be incorrect. If the Date newborn screening results referred out field does not contain a date, please notify NSO immediately. 12

Demo Review Information on Patient Information Screen Review information on the Patient Information tab and confirm that it is correct Click on Proceed 13

NSO DERF Encounter Retrieval Confirmation Screen This screen is used to enter information confirming the retrieval of an infant screen positive or to provide an explanation as to why an infant has not yet been retrieved. Complete all relevant fields displayed in the screen. Note: If you click on the Update Retrieval Confirmation button, another Retrieval Confirmation box will appear with the same fields, as well as the ability to delete the additional fields. Please note to not overwrite previous retrieval information. Please click the Update Retrieval Confirmation button when adding new retrieval information 14

Demo Enter Data in Retrieval Confirmation Screen Enter information in the Retrieval Confirmation screen Click on Add Retrieval Confirmation Field Name Has the infant's health care provider been informed of the positive newborn screen result? Date the infant's health care provider was informed of the positive newborn screen: Has the infant's parent/guardian been informed of the positive newborn screening result? Date the parent/guardian was informed of the positive newborn screen: Date Retrieval Confirmation Form Saved Notes Select Yes Enter the date a week ago from today Select Yes Enter the date a week ago from today Enter a date Click on Proceed 15

NSO DERF Encounter Retrieval & Clinical Status Screen This screen is used to document the Retrieval and Clinical Status information. Complete all relevant fields displayed in the screen. Note: Some fields are conditional based on the type of disease provided from the screening. 16

Demo Enter data in Retrieval & Clinical Status Screen Enter information in the Retrieval & Clinical Status screen Field Name Infant's Primary Healthcare Provider, Date Diagnostic Evaluation Initiated Health status of screen positive infant at the time of retrieval Was the infant diagnosed prior to retrieval? Was the infant symptomatic of CAH at the time of retrieval? Was the infant gaining weight at the time of retrieval? Was the infant hospitalized at the time of retrieval? Did the Mother Receive Steroids at Anytime During Pregnancy? Was the infant virilized? Notes Enter value Enter a date Enter Well Enter No for all Click on Proceed 17

NSO DERF Encounter Diagnostic Evaluation Screen This screen is used to document Diagnostic Evaluation information. Complete all relevant fields displayed in the screen. 18 Note: This is the default screen for the Diagnostic Evaluation tab when entering a DERF for a child that has screened positive for CAH.

NSO DERF Encounter Diagnostic Evaluation Screen The investigations that are displayed in the table on the Diagnostic Evaluation screen are generated based on the disease specific DERF being entered. 1. Additional investigations can be added by clicking the Add Investigation button. 2. The Add Investigation(s) multi selection popup will appear so that one or more investigations can be added to the Diagnostic Evaluation table 3. The investigations shown in the Add Investigations table are grouped first by the disease specific DERF, and then based on their profile names, and each grouping can be expanded or collapsed with the +/ button. 19

NSO DERF Encounter Diagnostic Evaluation Screen Adding Analytes: To add an analyte to the table, click the Add Investigation button. A multi select list will display all analytes listed for your selection. They are sorted as follows: 1. The analytes that are always used for the disease specific DERF you are entering. 2. All remaining analytes are then listed in alphabetical order. Deleting Analytes: Each disease has a set of default or static analytes. These analytes cannot be deleted. Only analytes that are manually added can be deleted. Date Performed: In the Investigation Table you can select a specific date for each analyte or use the same as above or same for all. Prepopulation: For patients that may have 1 or more DERFs that need to be entered, any analytes that have been entered in the initial DERF will prepopulate into the 2 nd DERF upon its creation. Analytes that are common between the 2 DERFs cannot be deleted by the user. Test Not Done In the Investigation Table you can select the Test Not Done checkbox to denote that a test was not performed for that patient. This checkbox also exists on the header level for groups of investigations. Selecting Test not Done at the header level will check all Test not Done values for that grouping of investigations. 20

Demo Enter Data in Diagnostic Evaluation Screen Enter information in the Diagnostic Evaluation screen Field Name 17 OH Progesterone, Na, K, Chloride, DHEAS Notes Enter Value, Lower Range, Upper Rage, and Date Ultrasound, Cortisol, Renin, Glucose, Other ACTH at 0 min, ACTH at 30 min, ACTH at 60 min Enter Ultrasound = Ovaries, and select Test Not Done for the rest of the fields Enter a date and click Same For All. Enter the remaining values Gene Date of Disposition After clinical and/or diagnostic evaluation is completed, decision made to Select Test Not Done Select today s date Initiate Treatment Click on Save 21

Demo Adding and Deleting Data from Diagnostic Evaluation Screen Click on the Add Investigation button Field Name Select 17 OH Progesterone and Na Notes Click OK Select the Delete checkbox for each the analyte Click on Delete Click on Proceed 22

NSO DERF Encounter Definitive Diagnosis & Family History Screen This screen is used to document the specific details of the Definitive Diagnosis & Family History. Complete all relevant fields displayed in the screen. Note: This is the default screen for the Definitive Diagnosis & Family History tab. 23

NSO DERF Encounter Definitive Diagnosis & Family History Screen The Add New Diagnosis button is enabled only after it has been confirmed that the infant was not Deceased prior to definitive diagnosis. To add a new Definitive Diagnosis, click on the Add Diagnosis button 24

NSO DERF Encounter Definitive Diagnosis & Family History Screen When the Add New Diagnosis button is clicked, the Definitive Diagnosis multi selection popup will appear so that one or more diagnoses can be added to the Definitive Diagnosis screen. The diagnoses which are specific to the current screen positive disease will be displayed at the top of the list, followed by those for All DERF s, then the rest of the diagnoses. 25

Demo Enter Data in Definitive Diagnosis & Family History Screen Enter information in Definitive Diagnosis & Family History screen Field Name Deceased prior to definitive diagnosis being established Definitive Diagnosis Was the diagnosis made in the infant or the mother? Date of Definitive Diagnosis Total # of full siblings, Total # of deceased full siblings, Total # of affected full siblings Notes No Select 21 Hydroxylas Deficiency: Salt Wasting Infant Enter a Date Enter 0 Click on Proceed 26

NSO DERF Encounter Retrieval Centre Details Screen This screen is used to Retrieval Centre Details, such as who is completing and responsible for the DERF. Complete all relevant fields displayed in the screen. Note: Specify additional DERF completed by and Reviewed with Regional Treatment Centre Responsible Physician fields by clicking on the respective Add buttons If Appended results is checked, select which results will be faxed to NSO from the list. 27

Demo Enter Data in Retrieval Centre Details Screen Enter information in Retrieval Centre Details screen Field Name DERF completed by Reviewed with Regional Treatment Centre Responsible Physician Appended Results Please Specify Notes Select a name from dropdown Select a name from dropdown If checked then Please Specify molecular results displayed Check molecular results Click on Proceed 28

NSO DERF Encounter Summary Screen The Summary screen appears when the proceed button is clicked from the Retrieval Centre Details tab or the Submit button is clicked from any of the other tabs, and all data validation rules have been passed. This screen summarizes the data from all the tabs in a read only format on one page. Within the Diagnostic Evaluation table, only fields where you entered a value is displayed. From this screen, you must click on Confirm Submission to submit and finalize the encounter. 29

Demo Review Information on Summary Screen Review the information on the Summary screen The Summary screen will display all values that you have entered for the DERF You can only submit the DERF encounter from this screen, once you have passed all data validation rules Click on Confirm Submission to complete the entry/submission of the DERF All validation rules must be passed before the encounter can be successfully Submitted. Encounters that are not Submitted will stay in a saved Draft mode 30

Success You have now successfully created and submitted an NSO DERF encounter Please ensure that the DERF is complete prior to submission. Changes to a DERF after submission will result in a warning prompt. 31

NSO DERF Encounter Encounter Data Entry IMPORTING DATA 32

NSO DERF Encounter Import from Existing DERF Within the Diagnostic Evaluation Screen, if the patient you are entering a DERF for has more than one DERF Encounter in the system created, you can import information entered from the other DERF encounter(s) using the Import Investigation from Existing DERF button. 33

NSO DERF Encounter Import from Existing DERF Clicking on the Import button will bring up a prompt window containing all available DERFs for the patient that you can import from When importing data into the DERF you are currently entering for the patient, if the DERF you are importing from already contains results for the same investigation(s) with the same Date(s) Performed, those investigations will be overwritten with the imported data. Please confirm and review the patient s information when using the Import functionality. 34

NSO DERF Encounter Appendix 1 DATA ENTRY RULES 35

NSO DERF Encounter Patient Information Screen As a reference, the following slides contain all the data elements in the DERF Encounter and any validation rules related to that field. Birth Weight Pre populated from NSO screening Read only Gestational Age at Birth Pre populated from NSO screening Read only Date newborn screening results referred out Pre populated from NSO screening Read only NSO Referring Physician Pre populated from NSO screening Read only Disease Pre populated from NSO screening Read only Analyte Name/ Ratio Pre populated from NSO screening Read only Unit of Measure Pre populated from NSO screening Read only Rounded concentration value Pre populated from NSO screening Read only 36

NSO DERF Encounter Retrieval Confirmation Screen Infant s Primary Healthcare Provider If entered on Retrieval Confirmation tab, entry will prepopulate into the field on the Retrieval and Clinical Status field. Has the infant's health care provider been informed of the positive newborn screen result? Date the infant's health care provider was informed of the positive newborn screen: Visible and Mandatory only if Has the infant's health care provider been informed of the positive newborn screen result? = Yes If this field has been enabled and the user does not enter a value, upon Save, the system will flag this field as mandatory, and the encounter will not be saved into a draft status until they enter a value for this field. If this field has been enabled and the user does not enter a value, upon Proceed, the system will flag this field as mandatory, and the user cannot proceed to the next tab until they enter a value for this field Health care provider has not been informed because: Visible and mandatory if Has the infant s health care provider been informed of the positive newborn screen result? = No 37

NSO DERF Encounter Retrieval Confirmation Screen Has the infant's parent/guardian been informed of the positive newborn screening result? Date the parent/guardian was informed of the positive newborn screen: Visible and Mandatory only if Has the infant's parent/guardian been informed of the positive newborn screen result? = Yes If this field has been enabled and the user does not enter a value, upon Save, the system will flag this field as mandatory, and the encounter will not be saved into a draft status until they enter a value for this field. If this field has been enabled and the user does not enter a value, upon Proceed, the system will flag this field as mandatory, and the user cannot proceed to the next tab until they enter a value for this field Parent/guardian has not been informed because: Visible and mandatory if Has the infant s parent/guardian been informed of the positive newborn screen result? = No or Unknown Comments Date Retrieval Confirmation Form Saved 38

NSO DERF Encounter Retrieval & Clinical Status Screen Infant s Primary Healthcare Provider Prepopulated from the Retrieval Confirmation tab, if entered Date Diagnostic Evaluation Initiated Mandatory unless No follow up diagnostic testing initiated is entered Or if Health status of screen positive infant at the time of retrieval = Deceased Health status of screen positive infant at the time of retrieval Date of death Visible and Mandatory if Health of infant = Deceased Cause of death Visible and Mandatory if Health of infant = Deceased None Comments Comments regarding the clinical status of the screen positive patient Was the infant diagnosed prior to retrieval? None Comments Comments regarding whether the infant was diagnosed prior to retrieval Was the infant symptomatic of <screen positive disease name> at the time of retrieval? None Specify Symptoms Comments regarding whether the infant was symptomatic of the disease prior to retrieval Mandatory if Was the infant symptomatic of <screen positive disease name> at the time of retrieval?= Yes Was the infant gaining weight at the time of retrieval? None Comments None 39

NSO DERF Encounter Retrieval & Clinical Status Screen Was the infant hospitalized at the time of retrieval? None Specify Reason(s) for hospitalization Comments regarding whether the infant was hospitalized due to the screen positive disease at the time of retrieval Mandatory if Was the infant hospitalized at the time of retrieval = Yes Did the mother receive steroids at any time Disease specific field during pregnancy Displayed only when the screen positive disease name = CAH Mandatory when the screen positive disease name = CAH Specify reason Comments regarding maternal steroids Was the infant virilized? Disease specific field Displayed only when the screen positive disease name = CAH Mandatory when the screen positive disease name = CAH Comments Comments regarding whether the infant was virilized Did the infant present with meconium ileus? Disease specific field Displayed only when the screen positive disease name = CF Mandatory when the screen positive disease name = CF Did the infant have a cough or wheeze at the Disease specific field time of retrieval? Displayed only when the screen positive disease name = CF Mandatory when the screen positive disease name = CF No follow up diagnostic testing initiated Comments 40

NSO DERF Encounter Diagnostic Evaluation Screen Investigation Read only Disease specific list with default rows and additional rows that can be added by the user Test Not Done Mandatory if the user has not entered a value in the Value field for the following profiles if they belong to the disease specific DERF by default Disease Specific Investigations/Additional Diagnostic Investigations Hemoglobin percentages Urinary pterin analysis Adrenocorticotropic hormone stimulation test CFTR molecular results Molecular Results (in standard nomenclature) Value Free Text Numeric values can only contain up to 2 decimal points The following profiles are mandatory if they belong to the disease specific DERF by default Disease Specific Investigations Hemoglobin percentages Urinary pterin analysis Adrenocorticotropic hormone stimulation test CFTR molecular results Molecular Results (in standard nomenclature) Unit of Measure Mandatory if the field is visible and user has entered Value Some will be prepopulated based on predefined rules in BORN Values that are pre populated can be overwritten by the user as required 41

NSO DERF Encounter Diagnostic Evaluation Screen Lower Range Mandatory if the user has entered Value Numeric values can only contain up to 2 decimal points If Value is numeric, Lower Range will be validated to be less than Upper Range Upper Range Mandatory if the user has entered Value Numeric values can only contain up to 2 decimal points If Value is numeric, Upper Range will be validated to be greater than Lower Range Date Performed Mandatory for each Analyte instance where a value is entered Using Same for All will populate all Date performed fields for that group of Investigation with the same date that is entered in the first box for that analyte profile grouping Using Same as Above button will copy the Date Performed from the entry directly above it If the Date Performed field previous to the field being entered is blank (one or more than one), the system will copy the next available date that was entered that is available Comment None Date of Disposition None Disposition Comments None After clinical and/or diagnostic evaluation is completed, decision made to None 42

NSO DERF Encounter Definitive Diagnosis & Family History Screen Deceased prior to definitive diagnosis being established Please specify Visible and mandatory if Deceased prior to definitive diagnosis being established = Yes Was the result a true positive? If the DERF being entered has been Submitted (not in save or draft mode), this field is only editable by NSO RRTC users Add Diagnosis (button) Enabled if Deceased prior to definitive diagnosis being established and Known explanation for screen positive are entered Definitive Diagnosis Definitive Diagnosis added by the user are populated from the selection(s) made in the popup and are read only once the selection is made in the popup There can only be one instance of each Definitive Diagnosis Please Specify Visible and Mandatory only if Definitive Diagnosis = Other, specify: or Was the diagnosis made in the infant or the mother? Mandatory for each Definitive Diagnosis instance Date of Definitive Diagnosis Mandatory for each Definitive Diagnosis instance Comments none Is there a family history of Visible and mandatory if the user is creating the disease specific DERF for CH, and dyshormonogenesis Definitive Diagnosis = CH Fixed: Dyshormonogenesis If no family history, how was the diagnosis made? Visible and mandatory if the user is creating the disease specific DERF for CH, and Is there a family history of dyshormonogenesis = No or Unknown 43

NSO DERF Encounter Definitive Diagnosis & Family History Screen Total #of full siblings Only needs to be entered for the first Definitive Diagnosis group. Subsequent total # of full siblings for a new Definitive Diagnoses will be prepopulated based on the first entry value will prepopulate between multiple DERFs for the same accession number Mandatory if Definitive Diagnosis does not = Not Affected (Note: This applies to the Not Affected value only, not the additional values that contain Not Affected in the label) Total #of deceased full siblings Only needs to be entered for the first Definitive Diagnosis group. Subsequent total # of deceased siblings for a new Definitive Diagnoses will be prepopulated based on the first entry value will prepopulate between multiple DERFs for the same accession number Mandatory if Definitive Diagnosis does not = Not Affected (Note: This applies to the Not Affected value only, not the additional values that contain Not Affected in the label) Total #of affected full siblings Mandatory if Definitive Diagnosis does not = Not Affected (Note: This applies to the Not Affected value only, not the additional values that contain Not Affected in the label) Other affected family members Specify other affected family member Visible and Mandatory only if Other affected family members of affected newborn screen positive relationship child = Other, specify Is the DERF & review complete? (to be completed by NSO only) This field always appears as the last field in the Definitive Diagnosis group, regardless of how many Definitive Diagnosis have been added Mandatory only if being entered by a NSO user and visible only for NSORRTC users Once a DERF review process and complete is checked off and the DERF is Submitted, if an RRTC user makes any changes/edits to the submitted DERF, the system will display a prompt alerting the user that: "The review process for this DERF/SDRF is completed. Please contact NSO to notify them of the changes you are making." Once the changes by the RRTC user are saved/submitted, the system will send an email notification to NSO alerting them that a change has been made to a DERF and ask the user to run a report to view the details of the change 44

NSO DERF Encounter Retrieval Centre Details Screen DERF completed by Add button can generate additional pick list(s) for user entry Reviewed with Regional Treatment Centre Add button can generate additional pick list(s) for user entry Responsible Physician Appended results? Based on user selection, a message will be dynamically generated below this field o If user selects Yes, display: Please print DERF and fax DERF and results to NSO at 613 523 8199 Parents/guardians have requested that the diagnostic evaluation information not be shared with NSO Date DERF completed Field is not displayed in the UI but is derived from the date the form is successfully submitted The Date DERF Completed field will show Date will populate when DERF is submitted in the Summary tab until the DERF is submitted (not in Draft mode) The date of submission will be displayed in that field once the DERF has been submitted If an already submitted DERF is edited and re submitted, the date will update with the new submission date Age at Diagnosis Calculated field: Date of Definitive Diagnosis Patient DOB If there is more than one Definitive Diagnosis, the system will take the earliest date of diagnosis This field only appears in the Summary screen 45

Questions? www.bornontario.ca info@bornontario.ca 46