Neuropathies Amidst the Pandemic: Remote Phenotype Validation and Assessment of Patient Needs

ABSTRACT

The past two years have been significantly overshadowed by the respiratory virus Covid-19. This has shown a relevant impact on health care systems, so that at a specialized neuromuscular center, we experienced a shortness of personnel and time, and in parallel, we were facing many unanswered questions addressed to us by patients with rare diseases. In this study, we developed a new questionnaire to assess patient needs, concerns, and symptoms confronting the global pandemic. We included individuals with hereditary neuropathies (n=15), autoimmune-inflammatory neuropathies (n=26), or idiopathic small fiber neuropathies (n=45). For validation, we used previous clinical examination reports. Forty-six percent of the included patients were female, 52% male, and one patient diverse. The mean age at examination was 52.67±13.37 years (range 19-79 years). Most of the patients (59%) reported mild to moderate limitations in their daily life activities due to Covid-19. Severe impairment was reported in 28%. Due to the pandemic, 54% of the patients reported to be concerned about their own and 76% about their relatives' health. Patients with a positive family history were 2.4x more likely to be seriously worried about other family members. We observed that patients with more wide-spread sensory loss reported higher impairment levels than those with distal sensory loss only. Overall, 37% of the patients said that contracting Covid-19 was their main concern, including the presumed risk of a severe course. Further 34% were worried that their neuropathy might worsen if they ever contracted Covid-19. Thirtythree percent of the patients experienced limitations in their treatment options, e.g. by not being able to continue their physical therapy. Seven percent were concerned about social distancing, as daily care required direct interactions with others. Whereas 65% of the included individuals confirmed that they felt appropriately informed by their treating physicians, 21% wished to receive more information. Sixteen percent, however, said that they did not dare to ask their questions in order to not disturb the health care personnel amidst the crisis. Patients with hereditary, autoimmune, or small fiber neuropathies did not show any differences in their Covid-related dailylife impairment. Previous clinical results correlated with patient-reported sensory levels;and gait unsteadiness was reported significantly more often in patients with afferent ataxia. We conclude that Covid-19 imposes a relevant daily-life burden on neuropathy patients. Patient-reported outcome measures are a valid remote strategy if in-person visits are not possible.