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Predicting Caregiver Quality of Life in ALS


Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neuron Disease is a rare neurodegenerative and currently incurable disease. Due to the absence of a definitive test, diagnosis often involves extensive medical exams, lasting up to a year. This process can be exhausting for patients and their families. It is important for patients to have support from informal caregivers, such as family members or close friends. However, these new duties associated with caregiving may have a great impact on the caregivers’ quality of life (QoL).


FI Mooney (University College Dublin), PI Hardiman (Trinity College Dublin) and PhD student Anna Markella Antoniadi (Trinity College Dublin) worked towards the identification of the predictors of a caregiver’s QoL, in addition to the development of a model for clinical use to alert clinicians when a caregiver is at risk of experiencing low QoL. The data were collected through the Irish ALS Registry and via interviews on several topics with 90 patient and caregiver pairs at three time-points.

Potential impact

This study identifies novel factors impacting caregiver QoL in ALS, incorporating both patient and caregiver traits. Furthermore, employing machine learning and explainable AI, the research unveils a proof-of-concept model showcasing AI’s potential to enhance healthcare decision-making processes. Read more about this research, published in Nature Scientific Reports

Read the full publication here