Quality of life in family caregivers of patients with amyotrophic lateral sclerosis in China

Abstract

<p><strong>Background: </strong>In previous research, improving family caregivers' quality of life (QoL) positively impacts overall home care and thus improves ALS patients' QoL [1]. Therefore, identifying the modifiable factors related to caregivers' QoL from aspects such as family environment and clinical characteristics can guide interventions to improve overall home care in ALS.</p><p><strong>Objectives: </strong>To examine the quality of life in family caregivers of ALS patients in China (n=101) and to analyse correlations with demographic, clinical and family environmental factors related to caregivers and patients.</p><p><strong>Methods:</strong> Quality of life was measured with care-related quality of life (CarerQoL) [2]. In addition to obtaining basic demographic data, the survey also obtained caring data such as time from receiving care of patients and frequency of nighttime caring time. Sleep quality of both caregivers and patients was assessed using the Pittsburgh Sleep Quality Index (PSQI) [3]. Patient's clinical characteristics were obtained with the MITOS staging system [4], ALS Functional Rating Scale-Revised-self-explanatory (ALSFRS-R-SE) [5], disease duration and time from onset. Family environmental characteristics were investigated by questions related to home alteration, whether other family members live together and their living status.</p><p><strong>Results: </strong>Results will be presented at the International Symposium on ALS.</p><p><strong>Discussions: </strong>We expect the findings to contribute to a better understanding of which modifiable factors can improve family caregivers' QoL and how we may provide interventions based on these factors to support them and then improve overall home care in ALS.</p>