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.

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

Giusiano S.
Co-first
;
Peotta L.
Co-first
;
Iazzolino B.;Mastro E.;Arcari M.;Palumbo F.;Torrieri M. C.;Bombaci A.;Grassano M.;Cabras S.;Di Pede F.;De Mattei F.;Matteoni E.;Solero L.;Daviddi M.;Salamone P.;Fuda G.;Manera U.;Canosa A.;Chio A.;Calvo A.;Moglia C.
Co-last
;
Vasta R.
Co-last
2021

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.
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ALS; caregiver burden; COVID-19 pandemic; QOL
Giusiano S.; Peotta L.; Iazzolino B.; Mastro E.; Arcari M.; Palumbo F.; Torrieri M.C.; Bombaci A.; Grassano M.; Cabras S.; Di Pede F.; De Mattei F.; Matteoni E.; Solero L.; Daviddi M.; Salamone P.; Fuda G.; Manera U.; Canosa A.; Chio A.; Calvo A.; Moglia C.; Vasta R.
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/2318/1788566
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