Thesis

23 Covid-19 and symptom severity in people with HSP Introduction Hereditary spastic paraplegia (HSP) is a neurodegenerative disorder, characterized by progressive spasticity and muscle weakness of both lower extremities. 1 Spasticity-related symptoms such as muscle stiffness and gait impairments are common and disabling in HSP. 2 Moreover, patients experience a substantial burden from both physical and mental fatigue. 2 Our clinical experience is that physical activity positively impacts on these symptoms, whereas psychological stress may impact negatively. This has, however, not been formally investigated. The (partial) lockdown due to the COVID-19 pandemic has profoundly changed people’s normal routine, assumably reducing levels of physical activity and increasing psychological stress, 3 thereby creating an opportunity to explore the influence of these changes on symptom severity in HSP. Methods We conducted a web-based survey among people with pure HSP2 in the Netherlands. An invitation was sent to participants from our previous survey (n=109), which was approved by our regional medical-ethics committee. Participants were asked to rate possible changes in levels of physical activity, psychological stress, and symptom severity on a 5-point Likert scale. They were invited and completed the questionnaire during the fifth week of the partial lockdown in the Netherlands. Descriptive statistics were used to analyze the primary data. Additionally, chi-square tests (or Fisher-exact-tests if appropriate) were used to test whether changes in physical activity and psychological stress were associated with changes in symptom severity (p<0.05). When both physical activity and psychological stress were associated with a specific change in symptom severity, multivariate logistic forward regression analysis was applied to correct for collinearity of these independent determinants. Results Fifty-eight participants returned a completed survey. Their average age was 57 years (range: 30-77) and 47% was male. A reduction of physical activities was reported by 74% (33% strong decrease, 41% mild decrease), whereas 19% reported no change and 7% mild increase. An increase in psychological stress was reported by 43% (3% strong increase, 40% mild increase), 50% reported no change, and 7% decrease (2% strong, 5% mild). The majority reported a general increase in symptom severity (figure 1). Participants with reduced physical activity more often experienced increased muscle stiffness (p=0.001), pain (p=0.004), physical fatigue (χ2(1)=4.680, p=0.031), and gait impairments (χ2(1)=5.129, p=0.024) compared to those with no change or an increase 2

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