Clinical telemonitoring and telerehabilitation of cognition in rare neurological diseases: a scoping review

Rare neurological diseases often present with severe cognitive impairment but face significant challenges in access to specialized care. Telemonitoring and telerehabilitation are promising approaches to improve the standard of care in common neurological diseases and could prove even more beneficial to patients with rare neurological diseases.

To review the available evidence on the usability and validity of cognitive telemonitoring or telerehabilitation in rare neurological diseases.

We performed a scoping review, examining all studies published in the last 25 years on both synchronous and asynchronous cognitive telemonitoring or telerehabilitation approaches in rare neurological diseases of adulthood.

Active digital cognitive tests show promising feasibility and validity, especially for people with Frontotemporal Dementia and Huntington’s Disease. However, methodological limitations remain, notably the high rate of dropouts for active telemonitoring and limited evidence of cognitive domain-specific sensitivity for passive telemonitoring. Cognitive telerehabilitation is emerging as a feasible and potentially effective approach for primary progressive aphasia. However, other rare neurological diseases still require proper investigation, and the available evidence is still largely preliminary, and is plagued by small sample sizes and heterogeneous methodology, which limits generalizability.

Our review recognizes the promise of remote approaches in expanding access to both cognitive monitoring and rehabilitation for rare neurological diseases but emphasizes the need for rigorously designed trials to establish clinical utility and best practices. Key unmet needs include improvement of adherence to active telemonitoring, evaluation of clinical validity in reference to gold-standard clinical outcome measures for passive telemonitoring, evaluation of clinical utility via longitudinal studies, evaluation of feasibility across a wider range of disease severity, and technological literacy.