It was September 1, 2022 when we introduced Dr. Matteo Gastaldi. Click here for his introductory post where we learned about him, his study plans and how his project would help patients and families affected by AE.
In the 2022 AEA Community Seed Grant Final Report, Dr. Gastaldi explains the outcomes of his project, the Cognitive teleRehabilitation in patients with Encephalitis of AutoIMmune etiology: CoRE-AIM study.
1. List the specific aims of your project and explain how they were met.
In this study we aimed to demonstrate the feasibility of a remote cognitive rehabilitation (CoRe) program in patients with autoimmune encephalitis, by using a novel system developed by our centre (HomeCoRE). This system entails the use of a laptop with a rehabilitation program with specific exercises designed to enhance cognitive problems such as memory and attention deficits. Notably, the set of exercises is specifically designed to fit the patient cognitive profile (that is assessed prior to the CoRe initiation) and address the most relevant deficits. The CoRe consists of a 12 week program with 3 sessions/week of 20 minutes each, which are performed remotely from home. Even though this is a pilot study on feasibility, we also aimed to collect preliminary results on the beneficial effects of the CoRe on cognitive performance, as well as data on user experience (especially how patients felt when performing CoRe).
So far in our study we screened 11 patients, but only 5 were enrolled and performed the CoRe. The remaining 6 patients were not eligible for CoRe because their cognitive profile was normal at neuropsychological testing (despite a subjective perception of cognitive impairment), and one because was affected by an additional neurological disease (dementia). Patients included had a median age of 60 years at the time of enrollment (range: 54-74), and the median time between the autoimmune encephalitis onset and CoRe administration was 34 months (range 12-69).
The advantage of using HomeCore is that the program automatically collects information regarding usability and user experience, that can provide us a measure of how likely patients are to successfully undergo cognitive telerehabilitation. For each patient a weighted score (WS) was calculated by the software taking into account correctness of the answers, the execution time, and the difficulty of the exercises, providing a unique value that can be used as an indicator of the overall patient performance (0-100).
This indicator improved over time, with a median WS at the beginning of the intervention of 43.4 (range 41.3-52.3) and a median WS at the end of the intervention of 52.3 (range 43.6-59.4, p=0.06). User experience was measured through a standardized questionnaire (User experience questionnaire, UEQ) validated in Italian. In the UEQ users are required to rate in a 7-point Likert scale the following items (with respective benchmark levels): attractiveness, perspicuity, efficiency, dependability, stimulation, novelty. Mean scores were above the benchmark levels for all the items listed.
The System Usability Scale (SUS), a tool used to assess the satisfaction of a digital user experience (scale 0-100, cut off for good satisfaction=>68) showed a median score of 85 (range 77.5-95.0).
Subjective improvement was evaluated through the Patient Global Impression of Change (PGIC) scale, a tool which requires patients to express the perception regarding their disability status in comparison to 3 months before (scale 1-7). Two patients indicated “5” (=minimally improved), one patient indicated “6” (=much improved) while two patients were not able to reply since they had no recall of their status three months before.
Regarding cognitive performance, that was measured with a common test (Montreal Cognitive Assessment, MoCA), three patients maintained substantially stable scores, one patient showed improvement and one patient showed worsening.
2. Describe the proposed impact/relevance of the project and the outcome.
Taken together, these data suggest that the patients had a good experience while using the CoRe and were able in all cases to efficiently complete their tasks, even improving while doing so. Notably, most patients had a subjective perception of improvement after using the CoRe, but unfortunately this improvement could not be detected by the neuropsychological test performed (which are likely not to be sensitive enough). Importantly, the project recruitment is still active, and we are enrolling new patients every month. We hope to reach the expected number of 15 patients before the end of the year.
3. Explain how the results of your project have direct implications for patients with AE.
We believe that our data show, even though in a limited number of patients, that remote cognitive rehabilitation is a feasible option that could facilitate the access to this treatment to patients with autoimmune encephalitis by reducing the need to access the hospital. Hopefully, this study will pave the road for a wider use of cognitive rehabilitation in this field. Unfortunately, we were not able so far to demonstrate a proper efficacy of the treatment on cognitive performances, but this is likely due to the limited number of patients and short duration of the treatment.
4. How did the AEA Community Seed Grant contribute to your ability to complete this project?
The funding of the AEA community Seed Grant was essential for our project, as it covered the costs for the laptops needed for the cognitive rehabilitation, the IT costs of installation of the program and supported the neuropsychologist (Sara Bernini) that trained and followed-up patients enrolled in the study.
Thank you, Dr. Matteo Gastaldi for your research and your commitment to improving the lives of patients and families impacted by AE.
Thank you to the entire AE Alliance Community for contributing during the 2021 Research Network Month which assisted in funding this seed grant project.
Thank you for your contributions this year to fund future research!
Together, we are changing the course of AE.