ABSTRACT
Introduction: Narcolepsy is a rare chronic central disorder of hypersomnolence often associated with complex comorbidities. The need of a multidisciplinary management, the scarcity of reference centers, the long diagnostic delay increase disease burden. We applied a multidisciplinary telemedicine approach during COVID-19 epidemic to allow patient access to the multidisciplinary consultations. Method(s): During the first COVID-19 epidemic peak and the related lockdown we applied a multidisciplinary care protocol through televisit to consecutive narcolepsy patients planned to attend routine follow-up visit. We conducted a baseline clinical sleep and endocrinological assessment, the former repeated at month 2, 4, 6 and 12 from study inclusion. Result(s): Thirty-nine out of 44 (88.6%) eligible patients (30 adults, 9 children/adolescents), from 12 different Italian regions (Figure), were included (Table 1);36 were residents outside the city of Bologna (median distance from the patients' city of residence: 234 Km, range 48-1221) (Figure). At baseline (Table 2), median Epworth sleepiness scale score (ESS) = 10 (range 8-13);median BMI = 25.6 (range 22.1- 30.9). At 1-year follow up, the ESS score improved reaching statistical significance (median 8, range 6-13, p = 0.013), and the proportion of patients with overweight and obesity significantly decreased (p = 0.008). Conclusion(s): Telemedicine was well received by narcolepsy patients during lockdown and allowed to improve sleep and endocrinological aspects at 1-year follow up. Future randomized studies will test the non inferiority of telemedicine, possibly paving the way to innovative care of rare diseases.
ABSTRACT
Background and aims: The COVID-19 pandemic may have hampered the management of patients with Parkinson's disease (PD) and Parkinsonian syndromes (PS). Since during the 1st epidemic bout (March-May 2020) the Local Healthcare Trust of Bologna (population=800,000) reduced scheduled healthcare activities, we designed a cohort study to assess the potential worsening of health status in PD/PS. Methods: Design/population: clinically confirmed PD/PS recruited through a record linkage system (ParkLink cohort);matched population control cohort (ratio=1:10). Outcomes: healthcare supply measures (outpatient visits, medical tests, pre-scheduled hospital admissions);clinical outcomes (urgent hospital admissions, disease-specific hospital admissions), March-August time frames in 2019/2020. Statistical analysis: ratios of monthly rates (RR). Results: Compared to 2019, in the ParkLink cohort (n=880, PD=696/PS=184) the overall 2020 scheduled healthcare provision was reduced (p<0.01), namely: any outpatient visit RR 0.67, neurologic visits 0.72, physical therapy 0.47, any medical test 0.69, pre-scheduled hospital admission 0.80. The control cohort (n=8,817) showed a similar reduction. Undesirable clinical outcomes (Figure) increased in the ParkLink cohort (p<0.05): urgent hospital admissions RR 1.35, major injuries 1.83, infections 3.5, acute vascular events 2.2. Conversely, the control cohort did not show any increase. Conclusion: During the first six months of the COVID-19 epidemic healthcare provision was substantially reduced. PD/PS patients showed a significantly higher risk of major clinical events, that was not observed in a control population. The abrupt rearrangement of healthcare supplies, as well as the general reduction of physical activity during the lockdown period, may have favoured complications in PD/ PS patients.