P102 Psychosocial themes of the impact of the COVID-19 pandemic and shielding in adults and children with early-onset neuromuscular disorders and their families

Abstract

Introduction Most patients with early-onset neuromuscular disorders (NMDs) were advised to shield during the pandemic due to assumptions that treatments e.g. corticosteroids, or complications e.g. pre-existing respiratory failure would increase COVID-19 risk. It remains poorly understood how those with NMDs and their families approached and responded to risk mitigating strategies e.g. shielding. We aimed to determine themes describing the psychosocial impact of the COVID-19 pandemic and measures taken to reduce risk in this population. Methods In-depth questionnaires specifically designed to meet research aims were completed by telephone between September 17th and December 31st 2020 by patients with NMDs or their parent. Inductive thematic analysis was performed to first code transcriptions of audio recordings of questionnaires then develop candidate themes by exploring coded data. Candidate themes were evaluated against the original data set before defining final themes: participant validation was sought to provide additional confirmation of accuracy. Results 40 questionnaires were completed: patients were 70% male, aged 2 to 48 years with NMDs e.g. muscular dystrophies, spinal muscular atrophy. 80% required long-term non-invasive or tracheostomy ventilation. 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. Anxiety, fear and worry were the most frequently reported emotions, particularly in relation to health risk of COVID-19, but level and pervasiveness fluctuated during the pandemic. Strict adherence to shielding was reported at the start of the pandemic but was often relaxed due to 1) official guidance, 2) emerging evidence of less severe outcomes in children and NMD cohorts, and 3) unsustainability of limited social contact including cessation or reduction in personal care. Concern about hospital attendance during the pandemic, and anxiety regarding perceived lack of access to Intensive Care were common. Conclusions Measures to reduce transmission of COVID-19 have disproportionally affected patients with NMDs and their families. For most, negative psychosocial impacts have and will continue to improve, particularly due to the success of the vaccination programme. These aspects should be considered when advising patients and families on risk and risk-mitigating strategies during the current and future pandemics.