Needs for aids and equipment for the management of epilepsy in an Australian cohort

This paper investigated the bases of needs for a range of epilepsy aids and equipment and expressed concerns about the use of such devices. There was a 29.6% response rate (n = 393 of 1328) to Wave 4 of the Australian Epilepsy Longitudinal Study (AELS). The focus of Wave 4 was on the expressed needs and affordability of aids and equipment for people with epilepsy (PWE) and quality of life (QoL). Quantitative analysis was used to examine the association between self-reported need for aids and equipment, sociodemographic information, and QoL. Open-ended responses were subject to qualitative analysis. Approximately one-fifth of the sample felt that they needed specific aids, including emergency ID bracelets, seizure alarms, and seizure monitors. Those respondents who felt that they needed aids had more frequent seizures, had been recently injured by a seizure, and were less prosperous. The QoL of those in need of equipment was lower than that of those who felt that they did not need it. Qualitative analysis revealed a need for more information about the aids available, issues associated with affordability, and some concern about the utility of these aids for those who lived alone. Much research to date has focussed on the development and validation of devices for PWE and standards for testing. Fewer studies deal with the needs and experiences of PWE with regard to the use of such equipment. The development of these devices needs to ensure patient comfort and acceptability. In addition, there is a need to canvas the views of family, caregivers, and primary care providers on the usability of epilepsy aids and equipment. Further person-centered research is needed in assessing the need for and usability of aids and equipment for the management of epilepsy. •Need for aids included frequent seizures, recently injury, and low prosperity.•Almost half who expressed a need for aids said that they could not afford them.•There was a lack of knowledge and understanding of aids and equipment.