COVID-19 in children with neuromuscular disorders

Benito, Daniel Natera-de; Aguilera-Albesa, Sergio; Costa-Comellas, Laura; García-Romero, Mar; Miranda-Herrero, María Concepción; Olives, Júlia Rúbies; García-Campos, Óscar; Val, Elena Martínez del; Garcia, Maria Josefa Martinez; Martínez, Inmaculada Medina; Cancho‐Candela, Ramón; Fernández-García, Miguel; Pascual-Pascual, Samuel Ignacio; Gómez‐Andrés, David; Nascimento, A.; Camacho, Ana; Ortez, Carlos; Madruga, Marcos; Munell, Francina; Martí, Itxaso; Pitarch, Inmaculada; Jiménez, Maria Rosario Domingo; Escalera, G Iglesias; Ramos, Joaquin Fernández; Banda, M; Ghandour, Diana; Grimalt, María Antonia; Nogales‐Gadea, Gisela; Molinero, Mireia Alvarez

doi:10.1007/s00415-020-10339-y

Cited by 24 publications

(17 citation statements)

References 13 publications

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“…Similarly, our study showed that the clinical symptoms of COVID-19 infection were not very severe, and all patients recovered without any significant sequelae. It confirms previously reported experience of a mild or asymptomatic course of the disease in the majority of children with DMD [ 8 , 17 ].…”

Section: Discussionsupporting

confidence: 91%

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Morbidity, Clinical Course and Vaccination against SARS-CoV-2 Virus in Patients with Duchenne Muscular Dystrophy: A Patient Reported Survey

Wasilewska

Sobierajska-Rek

Śledzińska

et al. 2021

IJERPH

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Background: Patients with Duchenne muscular dystrophy (DMD) may be at higher risk of a severe course of COVID-19. The aim of the study was to evaluate: (1) the incidence and course of COVID-19 infection in DMD patients; (2) the vaccination status of DMD patients; and (3) COVID-19 related anxiety among DMD families. Materials and Methods: The study was conducted during an online symposium for DMD patients and their families. All participants (DMD families; n = 150) were asked to fill in the online survey with questions about COVID-19 infection history, vaccination against SARS-CoV-2 and anxiety during pandemic. Results: 53 DMD patients filled in the survey. Five (9.43%) were COVID-19 positive with mild symptoms of respiratory infection and anosmia; 23 (42.6%) were vaccinated, but in almost 20% of DMD families, none of the family members was vaccinated. Respondents revealed anxiety related both to the vaccination procedure and to COVID-19 infection (complications after infection 93.6%, death 62.4% respondents). Changes in health care system organization also aroused concern among participants (85.3%). Conclusion: The course of the COVID-19 infection in DMD patients was mild. Not enough patients with DMD and their families are vaccinated. Education about the management of COVID-19 infections and the vaccination procedure for DMD patients is needed and expected.

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Section: Discussionsupporting

confidence: 91%

“…A Spanish center also shared the experience of 29 children with neuromuscular disorders infected by SARS-CoV-2—four boys with DMD and one BMD patient [ 17 ]. The majority of them were described as asymptomatic or mild cases, while only 10% were described as moderate.…”

Section: Discussionmentioning

confidence: 99%

Morbidity, Clinical Course and Vaccination against SARS-CoV-2 Virus in Patients with Duchenne Muscular Dystrophy: A Patient Reported Survey

Wasilewska

Sobierajska-Rek

Śledzińska

et al. 2021

IJERPH

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“…Hence from the beginning of the pandemic, patients with NMD have been defined as vulnerable [ 11 – 13 ], and the biopsychosocial implications of this for patients with NMD are unclear. Even though the disease course of COVID-19 in children and adolescents with neuromuscular diseases (NMD) may not be as severe as expected [ 14 , 15 ], the psychosocial problems related to the pandemic, have been reported to be more extensive among children with disabilities or chronic diseases than other children [ 16 ]. Furthermore, an Italian study showed that physical activity in patients with NMD, was significantly reduced during lockdown [ 17 ] which may have negative health consequences as physical activity and exercises are recommended to reduce progression of muscle weakness [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

Impact of the COVID-19 pandemic on biopsychosocial health and quality of life among Danish children and adults with neuromuscular diseases (NMD)—Patient reported outcomes from a national survey

Handberg

Werlauff²,

Højberg³

et al. 2021

PLoS ONE

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The purpose was to investigate the impact of the COVID-19 pandemic on biopsychosocial health, daily activities, and quality of life among children and adults with neuromuscular diseases, and to assess the prevalence of COVID-19 infection and the impact of this in patients with neuromuscular diseases. The study was a national questionnaire survey. Responses were obtained from 811 adults (29%) and 67 parents of children (27%) with neuromuscular diseases. Many patients reported decreased health or physical functioning, and changes in access to physiotherapy or healthcare due to the pandemic. Participants generally perceived themselves or their child to be at high risk of severe illness from COVID-19, but only 15 patients had suffered from COVID-19 and experienced mild flu-like symptoms. 25.3% of adults and 46.6% of parents experienced anxiety. 20.4% of adults and 27.6% of parents experienced symptoms of depression. In general, the pandemic contributed to anxiety, a depressed mood as well as to fewer leisure activities, less social contact, isolation from work/school and a reduced quality of life, in particular for patients who perceived themselves to be at high risk of severe illness. The results demonstrate that the pandemic has had a negative impact on biopsychosocial health and quality of life of patients with neuromuscular diseases.

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“…However, negative emotions including fear and anxiety fluctuated throughout the pandemic, and overall decreased over time: many respondents were reassured by emerging evidence suggesting COVID-19 in NMDs and children may be less severe than predicted. 13 17 In addition, there was hope that successful vaccine development would support them to increase social contact and activities.…”

Section: Discussionmentioning

confidence: 99%

Psychosocial impact of the COVID-19 pandemic and shielding in adults and children with early-onset neuromuscular and neurological disorders and their families: a mixed-methods study

et al. 2022

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AimTo describe and evaluate the psychosocial impact of the COVID-19 pandemic and measures to reduce the risk of transmission on patients with early-onset neuromuscular and neurological disorders (NMDs) and their families.DesignA mixed-methods study in which data were collected between 17 September 2020 and 31 December 2020 using a semi-structured telephone questionnaire developed specifically to meet research aims, and were analysed using quantitative methods and qualitative inductive thematic analysis.ParticipantsForty questionnaires were completed by patients with NMDs (eg, muscular dystrophies, spinal muscular atrophy) or their parent. 70% (n=28) of patients were male, aged 2–48 years. 90% (n=36) were wheelchair users; 72.5% (n=29) required long-term non-invasive or tracheostomy ventilation.ResultsStrict adherence to risk mitigation strategies, for example, shielding, were reported at the start of the pandemic. Over half continued some or all measures after official limitations were relaxed. 67.5% (n=27) reported changes to personal care assistance arrangements including temporary cessation of outside carers. Three themes were identified: (1) Concern regarding the health impact of COVID-19; (2) Perceptions of strategies to prevent SARS-CoV-2 transmission; (3) Psychological impact of the COVID-19 pandemic. The level and pervasiveness of frequently reported negative psychological effects, for example, anxiety and fear fluctuated, and were related to the perceived risk of COVID-19, concern about attending hospital, and perceived lack of access to intensive care management if severe COVID-19 infection occurred. Support, particularly from family and healthcare services, were considered to have positive psychosocial effects.ConclusionsMeasures to reduce transmission of COVID-19 have greatly affected patients with NMDs and their families. For most, negative psychosocial impacts have and will continue to improve, but this may depend on the incidence of further pandemic waves. Consistent, up-to-date and accessible information on clinical outcomes and risk mitigation must be provided to support patients’ physical and mental well-being.

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COVID-19 in children with neuromuscular disorders

Cited by 24 publications

References 13 publications

Morbidity, Clinical Course and Vaccination against SARS-CoV-2 Virus in Patients with Duchenne Muscular Dystrophy: A Patient Reported Survey

Morbidity, Clinical Course and Vaccination against SARS-CoV-2 Virus in Patients with Duchenne Muscular Dystrophy: A Patient Reported Survey

Impact of the COVID-19 pandemic on biopsychosocial health and quality of life among Danish children and adults with neuromuscular diseases (NMD)—Patient reported outcomes from a national survey

Psychosocial impact of the COVID-19 pandemic and shielding in adults and children with early-onset neuromuscular and neurological disorders and their families: a mixed-methods study

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