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.

To 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. A 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. Forty 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. Strict 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. Measures 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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Déclaration de conflit d'intérêts

Competing interests: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; MC reports personal fees from Honorarium paid for lecture at virtual ERS 2020 from ResMed, grants from Support from Breas Medical to attend the ERS 2019, outside the submitted work; and MC also works part-time for Breas Medical. Breas Medical had no part in the development or writing of this manuscript and all time spent on this project was outside of her employment hours for Breas Medical. No other authors have any financial or other relationships or activities that could appear to have influenced the submitted work.