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

Giusiano, Silvia; Peotta, Laura; Iazzolino, Barbara; Mastro, Enza; Arcari, Martina; Palumbo, Francesca; Torrieri, Maria Claudia; Bombaci, Alessandro; Grassano, Maurizio; Cabras, Sara; Pede, Francesca Di; DeMattei, Filippo; Matteoni, Enrico; Solero, Luca; Daviddi, Margherita; Salamone, Paolina; Fuda, Giuseppe; Manera, Umberto; Canosa, Antonio; Chiò, Adriano; Calvo, Andrea; Moglia, Cristina; Vasta, Rosario

doi:10.1080/21678421.2021.1912772

Cited by 20 publications

(19 citation statements)

References 11 publications

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“…Regarding the impact on caregivers’ anxiety/depression and burden of the COVID-19 pandemic, our findings did not reveal a significant increase in perceived stress and burden in either monitored groups, despite the imposition of national quarantine and other social restrictions that have induced most caregivers to perceive more loneliness ( 8 ) and a worsening of homecare assistance ( 19 ). Although the 3-month psychological support protocol reserved for TG did not show significant benefits in caregiver burden and distress, the remote bi-monthly phone calls that we targeted to all patients and caregivers (including those from the studied TG and CG) may have reduced perceived loneliness and subsequent distress.…”

Section: Discussioncontrasting

confidence: 65%

“…Therefore, patients with ALS need to have support from informal caregivers ( 10 ). However, these new duties associated with caregiving, as well as the condition of their loved ones, may have a great impact on the caregivers’ quality of life, and it reflects the importance of psychological support in the management of their condition ( 19 ). Understanding the factors associated with the caregivers can lead to more tailored support for them.…”

Section: Introductionmentioning

confidence: 99%

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Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

et al. 2022

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The coronavirus disease 2019 (COVID-19) pandemic confined most of the population to homes worldwide, and then, a lot of amyotrophic lateral sclerosis (ALS) centers moved to telemedicine services to continue to assist both patients with ALS and their caregivers. This pilot, randomized, controlled study aimed to explore the potential role of psychological support interventions for family caregivers of patients with ALS through resilience-oriented sessions of group therapy during the COVID-19 pandemic. In total, 12 caregivers agreed to be remotely monitored by our center since March 2020 and underwent scales for global burden (i.e., Caregiver Burden Inventory, CBI), resilience (i.e., Connor Davidson Resilience Scale, CD-RISC), and perceived stress (i.e., Perceived Stress Scale, PSS) at two-time points (i.e., at pre-treatment assessment and after 9 months or at post-treatment assessment). They were randomized into two groups: the former group underwent resilience-oriented sessions of group therapy two times a month for 3 months, while the latter one was only remotely monitored. No significant differences were found in CBI, CD-RISC, and PSS during the 9-month observation period in the treated group compared with the control group, suggesting a trend toward stability of caregiver burden together with resilience and perceived stress scores in all the subjects monitored. The lack of differences in caregivers’ burden, resilience, and perceived stress scores by comparing the two groups monitored during 9 months could be due to the co-occurrence of the COVID-19 pandemic with the stressful events related to caring for patients with ALS that might have hindered the detection of significant benefits from short-lasting psychological support.

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Section: Discussioncontrasting

confidence: 65%

Section: Introductionmentioning

confidence: 99%

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

et al. 2022

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“…Quite unexpectedly, the HADS and the AL-SAQ40 revealed only mild levels of mood disorders. However, contrast results on this topic were already obtained in two other different groups of ALS Italian patients [16,17]. This phenomenon is clinically confirmed by a similar percentage in the two groups of antidepressant drugs prescribed in the first year of the disease.…”

Section: Discussionmentioning

confidence: 79%

Accelerated Early Progression of Amyotrophic Lateral Sclerosis over the COVID-19 Pandemic

et al. 2021

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During the COVID-19 pandemic and the related lockdowns, outpatient follow-up visits for patients with chronic neurological diseases have been suspended. Managing people affected by amyotrophic lateral sclerosis (ALS) has become highly complicated, leaving patients without the standard multidisciplinary follow-up. This study aimed to analyze the impact of the COVID-19 lockdown on ALS disease progression. We compared the clinical data and progression in the first year following diagnosis for patients who received ALS diagnosis during 2020 (G20, N = 34), comparing it with a group of diagnosed in 2018 (G18, N = 31). Both groups received a comparable multidisciplinary model of care in our Tertiary Expert ALS Centre, Novara, Italy. The monthly rate of ALSFRS-R decline during the lockdown was significantly increased in G20 compared to G18 (1.52 ± 2.69 vs. 0.76 ± 0.56; p-value: 0.005). In G20, 47% required non-invasive ventilation (vs. 32% of G18). Similarly, in G20, 35% of patients died vs. 19% of patients in G18 (p-value: 0.01). All results were corrected for gender, age, site of onset, and diagnostic delay. Several factors can be implicated in making ALS more severe, with a faster progression, such as reduced medical evaluations and the possibility of therapeutic changes, social isolation, and rehabilitation therapy suspension.

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“…Besides limiting the access to healthcare, national quarantines restricted the possibility of meeting friends or family members and of receiving home assistance. Consequently, caregivers perceived lower family help and worsening of homecare assistance [ 60 ]. On the other hand, ALS patients took advantage of the time spent at home to perform new activities with their families [ 60 ].…”

Section: Outbreak Of Covid-19 Pandemic: Telemedicine Services For Als Patients and Caregiversmentioning

confidence: 99%

“…Consequently, caregivers perceived lower family help and worsening of homecare assistance [ 60 ]. On the other hand, ALS patients took advantage of the time spent at home to perform new activities with their families [ 60 ].…”

Section: Outbreak Of Covid-19 Pandemic: Telemedicine Services For Als Patients and Caregiversmentioning

confidence: 99%

Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic

et al. 2021

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Family caregivers of people with amyotrophic lateral sclerosis (ALS), a severely disabling neurodegenerative disease due to the degeneration of both upper and lower motor neurons, have a very demanding role in managing their relatives, thereby often experiencing heavy care burden. Previous literature has widely highlighted that this situation reduces caregivers’ quality of life and increases their psychological distress and risk of health problems, but there are relatively few studies that focus on psychological interventions for these situations. Family support is more—not less—important during crisis. However, during the COVID-19 pandemic, maintaining public safety has required restricting the physical presence of families for hospitalized patients. Caregivers of ALS patients felt increased sense of loneliness and experienced greater difficulties in the access to both hospital and home assistance. In response, health systems rapidly adapted family-centric procedures and tools to circumvent restrictions on physical presence. In this regard, internet-based and telehealth solutions have been adopted to facilitate the routine, predictable, and structured communication, crucial to family-centered care. This narrative review aims at addressing more current matters on support needs and interventions for improving wellbeing of caregivers of ALS patients. In particular, we aimed at highlighting several gaps related to the complex needs of caregivers of ALS patients, to the interventions carried out in order to respond to these needs, and to the changes that COVID-19 pandemic caused from 2020 to nowadays in clinical managing of ALS patients. Finally, we report ongoing experiences of psychological support for family caregivers of ALS patients through telehealth solutions, which have been reinforced in case of needing of physical distancing during the COVID-19 pandemic.

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

Cited by 20 publications

References 11 publications

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

Accelerated Early Progression of Amyotrophic Lateral Sclerosis over the COVID-19 Pandemic

Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic

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