Patient perceptions of telemedicine for first seizures and epilepsy
Research type
Research Study
Full title
Assessing the patient experience of remote clinical consultations for patients with first seizures and epilepsy during and following the COVID-19 pandemic.
IRAS ID
289251
Contact name
Tony Marson
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Summary of Research
To respond to the COVID19 pandemic, changes to services have been made at unprecedented speed, including the implementation remote clinical consultations. Research is required to evaluate the impact on remote clinical consultations, adopted by many in the COVID-19 pandemic, on the delivery of epilepsy care, particularly from a patient perspective, as there is a paucity of prior research investigating this. This study will use a mixed-methods approach to evaluate the impact of such changes to help better inform the delivery of routine epilepsy care in the future.
The primary aim is to ascertain patient perspectives about the experience of remote clinical consultations during and following the COVID-19 era for patients with a first seizure and patients with a formal epilepsy diagnosis. We will also explore whether demographic, social or clinical factors impact on patients experience of and perspectives about remote clinical consultations.
Eligible participants (patients undergoing either face-to-face, telephone or video consultations in the First Seizure or Epilepsy clinics) will be identified across multiple neuroscience centres across the UK as part of routine clinical care. They will be provided with a URL address to complete an anonymous survey online at a time of their convenience. This will capture demographic details, clinical details and views about the experience of remote clinical consultations using both quantitative and qualitative (free-text) data. No personally identifiable data will be collected. Data collection will run for a maximum of 6 months.
A mixed-methods approach should enable a rich overview of the patient experience regarding the telephone epilepsy clinic consultation and identify potential factors that may facilitate or act as barriers to future implementation as part of routine care.
Summary of Results
To respond to the COVID-19 pandemic, changes to services were been made at unprecedented speed, including the implementation of remote clinical consultations. Research was required to evaluate the impact of remote clinical consultations which were increasingly adopted through the pandemic on the delivery of routine epilepsy care. It was particularly important to understand the perspective of people living with epilepsy. This study used a mix-methods approach to evaluate the impact of this change to healthcare delivery to help better inform the delivery of routine epilepsy care in the future.
The primary aim was to ascertain patient perspectives about the experience of remote clinical consultations (by telephone or video) during the pandemic for people with a first seizure and those with an established diagnosis of epilepsy. We also explored whether demographic, social or clinical factors impacted on the experience of people with epilepsy using health services, with a particular focus on remote clinical consultations.
Eligible participants were people undergoing either face-to-face, telephone or video consultations for first seizures or established epilepsy. They were identified across multiple neuroscience centres across the UK as part of their routine clinical care, and provided with a URL address to complete an online anonymous survey after their consultation.
In total, 337 people with epilepsy from 5 neuroscience centres across England registered for the online survey. The majority of participants were treated by one neuroscience centre in the North West of England. Of the 303 surveys available to analyse after duplicates and incomplete surveys were removed, just over 80% of respondents reported experience of telephone or video consultations for epilepsy between February 2021 and October 2021.
When participants with experience of remote consultations were asked their views about how a first consultation following a first seizure should be performed, 88% indicated a preference for face-to-face consultations. This was a practice not being routinely performed in many NHS centres in England at the time, representing a discrepancy with patient preference.
When participants with experience of remote consultations were asked their views about how follow-up consultations should be performed 31% stated a preference for telephone consultations, 48% stated a preference for face-to-face consultations with the remainder expressing no preference.
When all participants were asked about models of care in the future, 39% were in agreement to NOT have routinely scheduled appointments for epilepsy, but instead have patient initiated follow-up (calling up to arrange a remote consultation in case of any issues with epilepsy or its treatment). 30% disagreed with this model of care, whilst the remained of participants expressed a neutral opinion. This finding suggests that many people would be willing to change the current model of care found in many NHS hospitals in the UK which currently operate a routine appointment system.
These results suggest that a significant proportion of people with epilepsy favour remote consultations for follow-up care, with a cohort preferring a patient-initiated follow-up model. Whilst there are limitations to this work, with more digital literate individuals being likely to complete the survey, these findings should help inform current healthcare providers to plan their outpatient care in line with patient preferences.
REC name
South Central - Hampshire B Research Ethics Committee
REC reference
20/SC/0435
Date of REC Opinion
2 Dec 2020
REC opinion
Favourable Opinion