Medical records for a drug-resistant epilepsy consultation in China: make the history understandable

A large bag of reports does not necessarily make a consultation easier than a carefully organized record. Evaluating drug-resistant epilepsy requires an account of the events, previous treatment, the circumstances in which investigations were performed, and the problems affecting life now. The aim is to let the receiving clinician in China trace the evidence and see what remains uncertain. Drawing on professional sources checked through September 9, 2026, this guide explains how to organize paper and electronic material for that purpose. NICE NG217: Terms used, drug-resistant epilepsy definition, updated January 2025NICE NG217: Diagnosis and assessment of epilepsy

Key takeaways

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The opening page can contain the patient's name and date of birth, main diagnoses, age or date at the first seizure, recent event pattern, current treatment, serious reactions, previous procedures or devices, and the question for this consultation. Patients do not have to reclassify every event themselves. An uncertain diagnostic term can be retained with the date and source of the original opinion.
Localization review usually needs images that can be examined across the full study, not only phone photographs of a few films. Ask the imaging provider for exportable original files, commonly DICOM, and keep the radiology report, examination date, and institution details with them. Confirm the receiving center's preferred transfer method. Bernasconi et al.: ILAE structural MRI recommendations and HARNESS protocol, 2019
Organize folders for the summary, events, medication, EEG, imaging, genetics, procedures, and safety information. Use dates and document types in filenames and provide a brief index identifying missing material and records already requested from the original institution. Open the electronic files before submission and retain convenient copies of essential prescriptions and paper documents.

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Full guide

Put the essential information on the first page

The opening page can contain the patient's name and date of birth, main diagnoses, age or date at the first seizure, recent event pattern, current treatment, serious reactions, previous procedures or devices, and the question for this consultation. Patients do not have to reclassify every event themselves. An uncertain diagnostic term can be retained with the date and source of the original opinion.

Instead of writing that every medicine failed, identify the treatment schedules, what changed while they were used, and why they ended. The first page guides the clinician to the supporting material rather than replacing it. Keep results that differ from the current interpretation; disagreement may be precisely what the new team needs to examine.

A concise summary is particularly helpful when records come from several hospitals or languages. It reduces the risk that a recent brief note obscures an important earlier event or a serious medication reaction.

Build a timeline with honest dates

Include the first event, changes in diagnosis, major investigations, treatment adjustments, and admissions. When a date is uncertain, use an approximate month or age and say that it is approximate. Do not invent precision to make the document appear complete. If family recollection and a hospital record conflict, preserve both sources for review.

Mark important infections, injuries, developmental changes, or other events potentially relevant to the course. The timeline helps establish sequence, but sequence alone does not prove causation. Whenever possible, connect an entry to the original report rather than leaving it as an unsupported summary.

The record can be updated as new information is obtained. A clearly marked gap is more useful than an apparently complete timeline that silently contains assumptions.

Describe different event types separately

For each familiar event, describe any warning, the earliest observable change, ability to understand and respond, where bodily changes begin, duration, and recovery. ILAE updated seizure classification in 2025, but accurate description remains the family's most useful contribution. Clinicians can assess which terminology fits the observed features. ILAE: Updated classification of epileptic seizures, 2025

Do not automatically combine nocturnal events, brief pauses, subjective auras, and major convulsions into one count. Indicate what the patient feels, what another person observes, and what has been captured during monitoring or on video. If functional seizures were diagnosed, include the basis for that diagnosis and examples of the typical events; functional seizures and epilepsy can coexist. AAN: Management of Functional Seizures, clinical guideline summary, December 2025

If the same event has received different names over time, record those names with their sources. A receiving clinician may be able to reconcile them, but the patient should not remove a difference merely to make the history look uniform.

Make the seizure diary comparable across treatment changes

State the period covered, frequency of each event type, rescue medication use, injuries, and emergency visits. Mark months with incomplete observation rather than treating missing information as no seizures. Explain changes in how the family records events, because an apparent increase may reflect improved recognition of brief episodes.

Include practical consequences: slower recovery overnight, inability to attend school afterward, or fewer falls. If an earlier report gives a percentage improvement without a clear baseline or observation window, preserve the original statement and identify the limitation. Do not calculate a new seizure-freedom rate from incomplete information. Wieser et al.: ILAE classification of outcome following epilepsy surgery, 2001

The diary does not need to be elaborate. Consistent categories and clear dates are more useful than decorative charts whose underlying counts cannot be recovered. Keep the original entries if a summary table is prepared later.

Preserve useful videos without compromising safety

For existing event videos, keep the original file and recording date, and note whether recording began before the event and whether it was interrupted. A short clip shows only part of an episode and may not represent every event type. Ask the hospital about accepted formats and the submission method so that the clinician receives a file that can actually be opened.

Protection and timing take priority during a seizure. Do not delay emergency care, restrain the person, or place objects in the mouth to obtain a recording. Another person may record when it is safe, but medication omission, sleep deprivation, or other attempts to provoke an event at home are inappropriate ways to produce evidence. CDC: First Aid for Seizures NICE NG217: Treating status epilepticus, repeated or cluster seizures, and prolonged seizures

Avoid editing away the beginning or recovery because it seems less dramatic. Those periods may provide information relevant to the diagnosis. If a shortened copy is provided for convenience, retain the complete version and make clear that an edit has been made.

Show how each medication trial was actually carried out

For past and present drugs, include the generic name, formulation, start and stop dates, actual schedule, treatment intensity reached, response, and reason for discontinuation. Distinguish monotherapy from combinations and identify trials limited by important adverse effects. Drug resistance depends on appropriate, adequate, tolerated, and actually used schedules rather than the number of drug names in the record. ILAE: Drug-Resistant Epilepsy, definition and clinical resources

Packaging or prescription photographs can help identify a product but do not establish how it was taken. Report missed doses, supply interruptions, swallowing difficulties, or financial barriers honestly. These details help the new team design a workable plan. Rescue medicines, contraception, other prescriptions, herbal products, and supplements belong on the list because interactions may matter. NICE NG217: Principles of treatment, safety, monitoring and withdrawal

Separate the current schedule from previous ones so that an outdated prescription is not mistaken for active treatment. A date beside the current list makes this distinction easier during a transfer between clinicians.

Retain the context of EEG recordings

Bring the complete report rather than a screenshot of the word abnormal. Identify whether it was routine, sleep, ambulatory, or inpatient video-EEG, whether medication was being taken or adjusted, and whether typical events occurred. If original data can be obtained, first ask the receiving center about file and software requirements. Reports and raw recordings serve different purposes. Tatum et al.: ILAE/IFCN minimum standards for inpatient long-term video-EEG, Epilepsia 2022 Kane et al.: IFCN revised EEG glossary and report format, 2017

A printed waveform cannot reproduce an entire monitoring session. Interictal discharges in a report are not equivalent to the number of clinical seizures each day. Where several events were recorded, provide event identifiers and the family's account of which resemble the usual episodes.

If the original hospital cannot export the full recording immediately, tell the receiving team what is available. A request for specific missing material is often more efficient than attempting to transfer every technical file without knowing whether it can be used.

Supply original MRI images and the written interpretation

Localization review usually needs images that can be examined across the full study, not only phone photographs of a few films. Ask the imaging provider for exportable original files, commonly DICOM, and keep the radiology report, examination date, and institution details with them. Confirm the receiving center's preferred transfer method. Bernasconi et al.: ILAE structural MRI recommendations and HARNESS protocol, 2019

If several MRIs exist, retain important earlier and recent studies for comparison. Images previously called normal may still be useful for expert review, so do not bring only the examination showing a lesion. Whether new epilepsy-specific imaging is needed depends on quality and the clinical question; patients need not independently book every possible scan before consultation.

Test the storage medium before travel. A disc that cannot be read or a link that expires before the appointment can prevent the intended review even when the report itself has been translated well.

Keep functional imaging with its acquisition details

PET, SPECT, and related studies require interpretation in context, including timing relative to seizures, technique, and limitations in the report. Metabolic or perfusion findings contribute to localization but do not alone define the final area that can be treated safely. Traub-Weidinger et al.: EANM PET and SPECT practice guideline for epilepsy, 2024

If the study was fused with MRI, ask whether the original and fused images can be provided. Existing magnetoencephalography or other specialized data may also be useful, without implying that every patient must undergo those tests.

Record the question each investigation was intended to answer. This helps a new team avoid overinterpreting an isolated colored image or assuming that several tests necessarily point to the same conclusion merely because they were performed during one assessment.

Bring the full genetic report

Include the testing method, sample information, precise variant description, laboratory classification, date, and any family testing. A variant of uncertain significance is different from an established pathogenic finding. Even within one gene, different mechanisms may affect interpretation. Genetic results need clinical and specialist interpretation together. Krey et al.: Current practice in diagnostic genetic testing of the epilepsies, ILAE Genetics Commission, 2022

If reanalysis or a revised classification has been issued, provide it with the earlier report and identify the newer version. Record relevant family observations without trying to determine inheritance independently. A translation must not turn an uncertain variant into a confirmed cause in order to fit a treatment or trial requirement.

The receiving team may ask for additional genetic information, but patients should not assume that repeating a large panel is necessary before existing results have been reviewed. The clinical question should guide what is requested next.

Previous surgery requires more than the operation's name

Prepare the operative report, pathology, presurgical localization conclusions, postoperative imaging, admission course, and subsequent seizure history. After SEEG, electrode-location and recording conclusions and relevant functional mapping may help reassessment. Recurrence cannot be understood from an operation name alone; the actual intervention and later events matter. Petrik et al.: Late seizure recurrence after initial complete seizure freedom following surgery, 2021

People with stimulation devices should include the model, implantation date, device card, recent checks and programming records, and previous symptoms or equipment problems. Do not change settings by copying another patient's parameters. The transfer of technical information allows the professional team to understand the current state and continue care safely. NINDS: Deep Brain Stimulation

If a prior intervention was performed abroad, retain the original terminology and supporting records. A short translation such as epilepsy surgery may hide distinctions that are central to deciding what further evaluation is reasonable.

Include function, development, and safety information

Neuropsychological reports, school observations, rehabilitation records, and descriptions of independence can help assess change over time. State the testing language, educational background, and medication or seizure circumstances at the assessment. Scores obtained under different conditions should not be compared mechanically. Put the patient's most important life goals on the consultation-question page. Baxendale et al.: ILAE neuropsychological assessment in epilepsy surgery, 2019

Keep serious allergy or adverse-reaction records and relevant laboratory results, including recent abnormalities. Laboratory values need dates, units, and reference ranges. Safety monitoring can directly affect whether a treatment should continue; a summary that blood tests were normal gives the new clinician little to verify. DailyMed: XCOPRI U.S. prescribing information, revised August 2025, current retrieval September 2026

If a reaction was only suspected to be medication-related, say so. If it was confirmed and resulted in specific avoidance advice, retain that advice. Precision helps protect the patient without unnecessarily excluding every medicine used at the time.

Translate meaning without removing uncertainty

Prioritize the clinical summary, active prescriptions, major investigation conclusions, and operative records. Keep the original documents so that technical language can be checked. Laterality, age, dates, dose units, and terms such as suspected or cannot exclude deserve particular attention because an error can change the clinical interpretation.

Patients and relatives may add observations, but label them as such rather than presenting them as a physician's conclusion. When reports use different seizure terms, retain the dates and original terms instead of silently harmonizing them. Seek medically appropriate language support when needed.

A short explanation of an unfamiliar local brand or document type can be helpful. The aim is not to make every page read as if it came from the same hospital, but to preserve what each source actually says.

Check that the package is accessible and traceable

Organize folders for the summary, events, medication, EEG, imaging, genetics, procedures, and safety information. Use dates and document types in filenames and provide a brief index identifying missing material and records already requested from the original institution. Open the electronic files before submission and retain convenient copies of essential prescriptions and paper documents.

Confirm the Chinese hospital's formal submission channel, intended recipient, and receipt of the important files before the consultation. Avoid placing complete personal records on public pages or sending them to contacts whose identity cannot be verified. Center information from the China Association Against Epilepsy can help locate an official service, with submission details confirmed by the hospital itself. 中国抗癫痫协会官方网站及CAAE癫痫地图入口

After the first review, respond to specific requests rather than repeatedly sending an expanding unsorted collection. A well-prepared record is valuable because it improves the next clinical judgment, not because it contains the greatest number of files.