Final edits to GGE and EE forms

[BrigidRegan]

Hi Roland In both GGE and EE forms:

1. Remove 'Local identifier' field
2. Remove 'Referral centre' field
3. Directly below the 'Patient deceased' field, add 'Maternal DNA available' with the options 'Yes, No, Unknown' and then a separate field below that with 'Paternal DNA available' with the options 'Yes, No, Unknown' - These should be required fields.
4. Below the maternal and paternal DNA fields, add 'Existing exome data' with the options 'Yes, No, Unknown'. Please add a field note here 'applies to exome data sequenced after 1st Jan 2013 only'
5. The changes to the EEG section for both forms are attached here. EEG changes.docx

EE form only:

1. Change 'genetic testing' field to 'Individual gene testing'
2. Above 'individual gene testing' add a field 'Gene panel performed' with the options 'Yes, please specify', 'No' and 'Unknown'. If 'Yes, please specify' is selected a free text box called 'Gene panel details' appears with field note 'Please provide the company and/or panel name. In-house panels can be included as 'in-house''. At the same time as the free text box can another field also appear called 'Gene panel results' with the options 'Normal', 'Abnormal, please specify', 'Unknown' and 'Finding of unknown significance, please specify'. If 'Abnormal, please specify' or 'Finding of unknown significance, please specify' are selected, a free text box called 'Gene panel results comments' appears.

Thanks!

[rolandkrause]

Hmm, here's a question of logic. We have not specified not which EEGs should be entered. Kevin already came up with the issue. Only one field is shown for EEGs for entry at a time. However, the case might be that the first EEG is normal but subsequent might be not. Wouldn't it be clearer to show a second input field for EEG finding if the first is anything but "not done" as if there is no first EEG done, there can be no second one.

[rolandkrause]

Needs to be reviewed but basic work done.

[BrigidRegan]

Thanks Roland - it all looks great. Couple of minor changes:

1. In EE form, change 'Previous genetic analysis' heading to 'Previous genetic and metabolic analysis'
2. In answer to your 'not done' and 'normal' question for EEG. Good pick up - these options both need to appear in EEG findings 1 on both forms but can be removed from the drop down list for EEG findings 2 and 3. For example, if a patient had two normal EEGs and then their third EEG had generalised spike wave, they would be entered as having generalised spike wave as their EEG finding 1. The normal EEGs would not be entered. We only want people to enter results that support the diagnosis, not every EEG result. Do you think it would be clear if we changed it to EEG abnormality instead of finding?

[BrigidRegan]

I actually think we do need 'Normal' and 'Not done for all three EEG findings lists. Does this explanation make sense to you? Finding to be selected from list provided. Where ‘Generalized spike and wave, specify frequency’ is selected, ‘GSW frequency’ will need to be completed. Where ‘Photo-paroxysmal response’ is selected, ‘Type of photo-paroxysmal response’ will need to be completed. A ‘normal’ EEG result should only be entered in ‘EEG finding 1’ if the patient has never had any documented EEG abnormalities. If only one EEG abnormality has ever been documented, enter ‘Normal’ for EEG finding 2. If the patient has only ever had one EEG, enter ‘Not done’ for EEG finding 2. The form allows for three EEG findings – please select the abnormalities that best represent and support the final syndrome selected. Where multiple findings exist, please enter in chronological order. Additional information about EEG, including age at EEG if deemed important, can be added through REDCap.

[rolandkrause]

I can follow your logic but I believe that “Normal” and “Not done” only make sense for the first field. The field should remain empty if no other finding is to report. One could specify “only normal” to emphasize that not positive finding has been made. How well can not done” be distinguished from  “unknown” in clinical practice?

I can code the requirements for details as data quality rules only, not as mandatory fields (at least not without hassle). 

On March 29, 2016 at 20:04:16, BrigidRegan (notifications@github.com) wrote:

I actually think we do need 'Normal' and 'Not done for all three EEG findings lists. Does this explanation make sense to you? Finding to be selected from list provided. Where ‘Generalized spike and wave, specify frequency’ is selected, ‘GSW frequency’ will need to be completed. Where ‘Photo-paroxysmal response’ is selected, ‘Type of photo-paroxysmal response’ will need to be completed. A ‘normal’ EEG result should only be entered in ‘EEG finding 1’ if the patient has never had any documented EEG abnormalities. If only one EEG abnormality has ever been documented, enter ‘Normal’ for EEG finding 2. If the patient has only ever had one EEG, enter ‘Not done’ for EEG finding 2. The form allows for three EEG findings – please select the abnormalities that best represent and support the final syndrome selected. Where multiple findings exist, please enter in chronological order. Additional information about EEG, including age at EEG if deemed important, can be added through REDCap.

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[BrigidRegan]

OK how about this (change in red)?

Finding to be selected from list provided. Where ‘Generalized spike and wave, specify frequency’ is selected, ‘GSW frequency’ will need to be completed. Where ‘Photo-paroxysmal response’ is selected, ‘Type of photo-paroxysmal response’ will need to be completed. A ‘normal’ EEG result should only be entered in ‘EEG finding 1’ if the patient has never had any documented EEG abnormalities. If only one EEG abnormality has ever been documented, leave ‘EEG finding 2’ blank. The form allows for three EEG findings – please select the abnormalities that best represent and support the final syndrome selected. Where multiple findings exist, please enter in chronological order. Additional information about EEG, including age at EEG if deemed important, can be added through REDCap.

From: Roland Krause notifications@github.com<mailto:notifications@github.com> Reply-To: rolandkrause/epi25 reply@reply.github.com<mailto:reply@reply.github.com> Date: Tuesday, 29 March 2016 3:13 pm To: rolandkrause/epi25 epi25@noreply.github.com<mailto:epi25@noreply.github.com> Cc: Brigid bregan@unimelb.edu.au<mailto:bregan@unimelb.edu.au> Subject: Re: [rolandkrause/epi25] Final edits to GGE and EE forms (#64)

I can follow your logic but I believe that “Normal” and “Not done” only make sense for the first field. The field should remain empty if no other finding is to report. One could specify “only normal” to emphasize that not positive finding has been made. How well can not done” be distinguished from “unknown” in clinical practice?

I can code the requirements for details as data quality rules only, not as mandatory fields (at least not without hassle).

On March 29, 2016 at 20:04:16, BrigidRegan (notifications@github.commailto:notifications@github.com) wrote:

I actually think we do need 'Normal' and 'Not done for all three EEG findings lists. Does this explanation make sense to you? Finding to be selected from list provided. Where ‘Generalized spike and wave, specify frequency’ is selected, ‘GSW frequency’ will need to be completed. Where ‘Photo-paroxysmal response’ is selected, ‘Type of photo-paroxysmal response’ will need to be completed. A ‘normal’ EEG result should only be entered in ‘EEG finding 1’ if the patient has never had any documented EEG abnormalities. If only one EEG abnormality has ever been documented, enter ‘Normal’ for EEG finding 2. If the patient has only ever had one EEG, enter ‘Not done’ for EEG finding 2. The form allows for three EEG findings – please select the abnormalities that best represent and support the final syndrome selected. Where multiple findings exist, please enter in chronological order. Additional information about EEG, including age at EEG if deemed important, can be added through REDCap.

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— You are receiving this because you authored the thread. Reply to this email directly or view it on GitHubhttps://github.com/rolandkrause/epi25/issues/64#issuecomment-203057785