Amyotrophic lateral sclerosis patients’ and caregivers' distress and loneliness during COVID-19 lockdown

Consonni, Monica; Telesca, Alessandra; Bella, Eleonora Dalla; Bersano, Enrica; Lauria, Giuseppe

doi:10.1007/s00415-020-10080-6

Cited by 39 publications

(52 citation statements)

References 6 publications

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“…The stress-related psychosocial impact of the lockdown is evident and multifaceted. Similarly to our results, several recent studies documented its negative impact on QoL, habits, behaviour and mental health in patients with chronic diseases and in the general population [8,16,25,26]. But we further showed that changes in habits per se did not have any apparent association with psychological well-being, whereas changes showing that patients with chronic pain use passive strategies and catastrophic appraisals [27].…”

Section: Discussionsupporting

confidence: 89%

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Life with chronic pain during COVID-19 lockdown: the case of patients with small fibre neuropathy and chronic migraine

et al. 2020

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Objective We aimed at investigating the impact of COVID-19-related distress on patients with chronic pain, highlighting the effects of changes in individual habits and public health care reconfiguration on physical and psychological health. Methods During the pandemic, 80 participants (25 patients with small fibre neuropathy (SFN), 42 patients with chronic migraine (CM) and 13 patients’ healthy family members (HFM)) were asked to evaluate their COVID-19 complains, changes in habits and clinical management, behaviour, mood, loneliness, quality of life (QoL), physical and mental health and coping strategies. Data were analysed by Spearman rho correlations and Mann-Whitney U tests. Results Patients had lower QoL, lower physical health and higher catastrophizing attitude towards pain than HFM. During the pandemic, SFN patients referred greater decline in clinical symptoms, worries about contagion and discomfort for disease management changes than CM patients. In the SFN group, the higher levels of disability were associated with suffering from changes in neurologist-patient relationship. CM patients complained of agitation/anxiety that was related to feelings of loneliness, depressive mood and catastrophism. Discussion Despite similar complains of change in habits and worries about COVID-19 pandemic, SFN and CM patients had distinct reactions. In SFN patients, pandemic distress impacted on physical health with worsening of clinical conditions, especially suffering from changes in their care. In CM patients, pandemic distress affected behaviour, mainly with psychological frailty. This suggests the need to customize public health care for patients with distinct chronic pain conditions.

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Section: Discussionsupporting

confidence: 89%

“…Participants were asked to complete a newly developed questionnaire assessing psychological distress due to COVID-19 [16]. The COVID-19 distress questionnaire was provided by paper or digital format or administered through a phone call.…”

Section: Methodsmentioning

confidence: 99%

Life with chronic pain during COVID-19 lockdown: the case of patients with small fibre neuropathy and chronic migraine

et al. 2020

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“…Notably, in line with recent reports describing a significant association between healthcare system changes during COVID-19 emergency and anxiety in patients with ALS [ 15 ], we found that clinical care changes imposed by the quarantine exerted a significant impact on self-perceived anxiety in our sample.…”

Section: Discussionsupporting

confidence: 91%

Predictors of self-perceived health worsening over COVID-19 emergency in ALS

et al. 2021

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“…Therefore, telehealth offers a potential solution to alleviate the global burden of the illness and further contributing towards the UN Sustainable Development Goal targets by 2030 (https://www.un.org/sustainabledevelopment/) [89]. Moreover, it is envisaged that telehealth benefits psychological well-being during and beyond the present pandemic in view that the feeling of loneliness, and not illness severity or its phenotypes, was significantly correlated with the fear of getting infected with coronavirus amongst MND patients [90]. Based on the previous qualitative work amongst MND patients [91], the potential benefits of telehealth for QoL may be expected in that it would increase mindfulness through appropriate understandings of symptoms, while giving patients and their carers the peace of mind through timely interventions, allowing them to savour moments.…”

Section: Discussionmentioning

confidence: 99%

Flexibility to manage and enhance quality of life among people with motor neurone disease

Ando

Young

2020

Disability and Rehabilitation

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Objectives: To identify influential factors for quality of life (QoL) among individuals with motor neurone disease (MND) and explore how regulatory flexibility and psychological flexibility may contribute towards maintaining and improving QoL. Methods: Semi-structured interviews were conducted with 26 individuals with MND. Thematic analysis, using both inductive and deductive analyses, was employed to examine subjective QoL in view of previous understanding of QoL. Results: Four factors were important for the QoL of participants: perceived illness prognosis, sense of self, concerns for significant others, and life to enjoy. These factors reflected psychological stress caused by MND, the participant's value system, and their beliefs about life. In optimising QoL, both regulatory flexibility and psychological flexibility were essential to maintain and enhance QoL. Often, regulatory flexibility was perceived among those employing a mindful approach, and psychological flexibility was found to involve savouring positive experiences. Conclusions: People with MND reported that seeking ways to both maintain and enhance their QoL is crucial, and that this may be accomplished by increasing flexibility through mindfulness and savouring. (171/200 words) ä IMPLICATIONS FOR REHABILITATION People with motor neurone disease (MND) seek to maintain quality of life (QoL) following changes caused by the condition, whilst attempting to enhance QoL by maximising their positive experiences. Regulatory flexibility is essential to maintain QoL and it was closely associated with mindful approach so that MND is not perceived as an inevitable threat to QoL. Psychological flexibility was found to enhance QoL and it involves savouring positive experiences, while abandoning fault-finding of the current situation. Positive inter-personal interactions can encourage people with MND to engage with mindfulness and savouring for favourable outcomes in terms of QoL; current support services should orient towards both mindfulness and savouring.

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Amyotrophic lateral sclerosis patients’ and caregivers' distress and loneliness during COVID-19 lockdown

Cited by 39 publications

References 6 publications

Life with chronic pain during COVID-19 lockdown: the case of patients with small fibre neuropathy and chronic migraine

Life with chronic pain during COVID-19 lockdown: the case of patients with small fibre neuropathy and chronic migraine

Predictors of self-perceived health worsening over COVID-19 emergency in ALS

Flexibility to manage and enhance quality of life among people with motor neurone disease

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