Amyotrophic lateral sclerosis caregiver burden and patients’ quality of life during COVID-19 pandemic

Abstract

Objective: To assess patients Quality of life (QoL) and the burden of their caregivers during Covid-19 pandemic and specifically the impact of two-month lockdown period. Methods: In April 2020, a total of 60 patients and 59 caregivers were administered by phone scales assessing patients’ QoL (McGill QoL Questionnaire), general health status (EQ-5D-5L), and caregiver burden (Zarit Burden Interview). The administration was repeated one month after the end of lockdown measures, with the addition of a qualitative questionnaire (COVID-QoL Questionnaire) exploring family reorganization and personal perception of lock down. Results: QoL and perceived health status did not worsen during lockdown, while caregiver burden increased (p = 0.01). Patient’s QoL and caregiver burden were inversely correlated at T1 (ZBI total score mildly correlated with Mc Gill existential subscore, p = 0.02, rho = 0.30 and with Mc Gill total score, p = 0.05, rho = 0.265). No significant correlations were found at T2. According to the COVID-QoL questionnaire, caregivers perceived lower family help compared to patients (p < 0.001). Conclusions: Restricted measures of lockdown period during COVID-19 pandemic did not result in a significant reduction of QoL in our cohort of ALS patients, while caregiver burden significantly increased. ALS motor impairment may have played a role in the unchanged life conditions of patients. Instead, the restriction of family help for primary caregivers could be responsible of their increased burden, reflecting the importance of a wide social support in the management of this clinical condition.

Keywords:

• ALS
• COVID-19 pandemic
• QOL
• caregiver burden

Acknowledgments

This study was performed under the Department of Excellence grant of the Italian Ministry of Education, University and Research to the ‘Rita Levi Montalcini’ Department of Neuroscience, University of Torino, Italy.

Declaration of interest

Silvia Giusiano, Laura Peotta, Barbara Iazzolino, Enza Mastro, Martina Arcari, Francesca Palumbo, Maria Claudia Torrieri, Alessandro Bombaci, Maurizio Grassano, Sara Cabras, Francesca Di Pede, Filippo De Mattei, Enrico Matteoni, Luca Solero, Margherita Daviddi, Paolina Salamone, Giuseppe Fuda, Umberto Manera, Antonio Canosa, Cristina Moglia, Rosario Vasta report no conflicts of interest. Andrea Calvo has received research grant from Cytokinetics. Adriano Chiò serves on scientific advisory boards for Mitsubishi Tanabe, Roche, Biogen, and Cytokinetics. The sponsor organizations had no role in data collections and analysis and did not participate in writing and approving the manuscript. The information reported in the manuscript has never been reported elsewhere.

Additional information

Funding

This work was in part supported by the Italian Ministry of Health [Ministero della Salute, Ricerca Sanitaria Finalizzata, grant RF-2016-02362405], the European Commission’s Health Seventh Framework Programme [FP7/2007-2013 under grant agreement 259867], and the Joint Programme – Neurodegenerative Disease Research [Strength, ALS-Care and Brain-Mend projects], granted by Error! Hyperlink reference not valid., University and Research.