ArticleJournal of intellectual disabilities : JOID2022
Rare, epilepsy-related disorder including intellectual disability - A scoping review of caregivers' identified information needs.
Article in Journal of intellectual disabilities : JOID, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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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.
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.
Who cites it
5 citing papers in PubMed.
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- 'We are the engine': a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability.Orphanet journal of rare diseases · 2025Article
- 'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.Journal of intellectual disability research : JIDR · 2025Article
- Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives.Journal of multidisciplinary healthcare · 2022Review
- Monogenic developmental and epileptic encephalopathies of infancy and childhood, a population cohort from Norway.Frontiers in pediatrics · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimsThe aims of this review were: (1) to obtain an overview of caregiver-reported information needs; and (2) to investigate if there are information needs that are unique for caregivers of persons with rare epilepsies.
methodWe followed the scoping review framework outlined by Arksey and O'Malley and the preferred reporting items outlined by PRISMA.
resultsAmong the 17 articles that met the inclusion criteria, 5 included caregivers of persons with rare epilepsies. Categories of information needs: (1) Medical information; (2) Information on how to cope with emotional distress; (3) Experiential information from peers; and (4) Interdisciplinary information exchange. The need for disorder-specific information seemed particularly important for caregivers of persons with rare epilepsies.
conclusionThere is a need for further studies, particularly on formal caregivers' information needs.
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Registered trials
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.