Rare, epilepsy-related disorder including intellectual disability - A scoping review of caregivers' identified information needs.

Aims: The 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.

Method: We followed the scoping review framework outlined by Arksey and O'Malley and the preferred reporting items outlined by PRISMA.

Results: Among 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.

Conclusion: There is a need for further studies, particularly on formal caregivers' information needs.