Evidence map›Paper›PMID 39668625›Full record

ArticleBJPsych open2024

Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops.

Edward Meinert, Madison Milne-Ives, Jennifer Sawyer, Liz Boardman, Sarah Mitchell, Brendan Mclean, Mark Richardson, Rohit Shankar

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BJPsych open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

  1. Holistic management of epilepsy in adults with intellectual development disorders.Epileptic disorders : international epilepsy journal with videotape · 2026
    Article
  2. Article
  3. Article
  4. Review
  5. Seizure Detection Devices.Journal of clinical medicine · 2025
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Edward MeinertTranslational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK; and Department of Primary Care and Public Health, School of Public Health, Imperial College London, London, UK.
Madison Milne-IvesTranslational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK; and Centre for Health Technology, School of Nursing and Midwifery, University of Plymouth, Plymouth, UK.ORCID https://orcid.org/0000-0001-7628-882X
Jennifer SawyerPlymouth Dental School, Faculty of Health, University of Plymouth, Plymouth, UK.
Liz BoardmanCornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Bodmin, UK.
Sarah MitchellCornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Bodmin, UK; and Peninsula Medical School, Faculty of Health, University of Plymouth, Plymouth, UK.
Brendan McleanPeninsula Medical School, Faculty of Health, University of Plymouth, Plymouth, UK; and Department of Neurology, Royal Cornwall Hospitals NHS Trust, Treliske, UK.
Mark RichardsonDepartment of Basic and Clinical Neuroscience, Institute of Psychiatry Psychology and Neuroscience, King's College London, London, UK.
Rohit ShankarCornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Bodmin, UK; and Peninsula Medical School, Faculty of Health, University of Plymouth, Plymouth, UK.ORCID https://orcid.org/0000-0002-1183-6933

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundNearly 25% of people with intellectual disability (PwID) have epilepsy compared to 1% of the UK general population. PwID are commonly excluded from research, eventually affecting their care. Understanding seizures in PwID is particularly challenging because of reliance on subjective external observation and poor objective validation. Remote electroencephalography (EEG) monitoring could capture objective data, but particular challenges and implementation strategies for this population need to be understood.

aimThis co-production aimed to explore the accessibility and potential impact of a remote, long-term EEG tool (UnEEG 24/7 SubQ) for PwID and epilepsy.

methodWe conducted six, 2-hour long workshops; three with people with mild intellectual disability and three with families/carers of people with moderate-profound intellectual disability. Brief presentations, easy read information and model demonstrations were used to explain the problem and device. A semi-structured guide developed by a communication specialist and art-based techniques facilitated discussion with PwID. For family/carers, active listening was employed. All conversations were recorded and transcribed. Artificial intelligence-based coding and thematic analysis (ATLAS.ti and ChatGPT) were synthesised with manual theming to generate insights.

resultsCo-production included four PwID, five family members and seven care professionals. Three main themes were identified: (1) perceived benefits for improving seizure understanding, informing care and reducing family and carer responsibility to accurately identify seizures; (2) the device was feasible for some PwID but not all; and (3) appropriate person-centred communication is essential for all stakeholders to reduce concerns.

conclusionsThe workshops identified key benefits and implementing barriers to SubQ in PwID.

Indexed as

co-productionelectroencephalographyepilepsyIntellectual disabilitypatient and public involvement

Identifiers

PMID39668625
PMCPMC11733491

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.