Background

Multiple Sclerosis (MS) is a chronic disease that requires frequent medical follow-up. COVID-19 pandemic may have changed the way patients accessed Health Care facilities including laboratory and imaging exams as well as urgent or routine medical appointments.

Objectives

To assess differences in health care accessibility from a patient perspective since the announcement of the state of emergency, due to COVID-19 pandemic, by the Portuguese government.

Methods

We performed an online questionnaire-based study; 485 adult patients followed in our tertiary centre with the diagnosis of MS were invited to answer the survey that was accessible from April to June 2020.

Results

We included 195 valid questionnaires from 195 patients. Fifty-four percent had a university degree (53.8%) and approximately half of the patients were professionally active. Most of the patients (69.7%) did not experience any symptom related to MS. Fifty-nine patients (30.3%) had new possible MS- related symptoms of whom 37 (62%) sought health care services: 47% had an appointment with their neurologist through a phone call, 22% contacted the MS nurse, 17% contacted the general practitioner, 8% were seen at the MS clinic (by other neurologist) and 6% at the emergency department. About a third of patients (30.6%) who did not seek a health care appointment admitted that would do it otherwise in a non-pandemic context. Regarding scheduled exams, 37 patients (19%) did not perform a scheduled blood collection and 23 (11.8%) did not perform scheduled imaging, mostly due to medical advice (46% and 44% respectively) or due to patient fear (31% and 19%). Eighteen patients (9.2%) stopped their prescribed medication of which 14 did so on their own volition. Thirteen patients were tested for COVID-19, two were positive. More than half the patients (55.9%) considered that teleconsultation was adequate and were satisfied with the information and recommendations provided (59.5%).

Conclusions

We conclude that COVID-19 pandemic markedly impacted Health Care access to MS patients and may change the way MS clinics evaluate and follow their patients as telemedicine emerges as a valuable tool.

Background

Multiple Sclerosis (MS) is a chronic disease that encompasses lifelong symptoms and both physical and psychological disability. The COVID-19 pandemic may have changed the way patients accessed Health Care facilities, with an impact on their perceived health status and psychological well-being.

Objectives

To evaluate physical disability and psychosocial well-being since the announcement of the state of emergency, due to COVID-19 pandemic, by the Portuguese government.

Methods

We performed an online questionnaire-based study; 485 adult patients followed in our tertiary centre with the diagnosis of MS were invited to answer the survey that was accessible from April to June 2020. We analysed data regarding disability (self-reported EDSS), mental status, fatigue and sleep through scales validated for the Portuguese population: suffering thermometer, Depression Anxiety Stress Scales-21 (DASS-21) (answered when suffering thermometer scored more than 5), Modified Fatigue Impact Scale (MFIS-21) and Satisfaction Alerteness Timing Efficiency Duration (SATED) sleep scale.

Results

We included 195 valid questionnaires from 195 patients. Fifty-four percent had a university degree (53.8%) and approximately half of the patients were professionally active. Self-reported EDSS presented a positive correlation with last EDSS measured by the neurologist (p<0.01, R²=0.68). Median (IQR) DASS-21 was 18 (12-25), MFIS-21 was 31 (17-49) and SATED 20 (16-24). Emotional suffering was equal or greater than 5/10 in 31% during the state of emergency and in 53% at the time of survey response. A third of patients reported lower quality of sleep due to COVID-19 and higher fatigue. A quarter of patients reported more pain and 30% reported more spasticity.

Patients who had a self-reported EDSS worse than the last EDSS measured by the neurologist had significantly worse performance in MFIS (p<.001) and SATED (p=.007), while no differences were observed for DASS-21 (p=.36). Patients who said that were feeling worse since COVID-19 pandemics also had worse performance in MFIS-21 (p<.001) and SATED (p=.028), while this was not observed for DASS-21 (p=0.26).

Conclusions

We conclude that the COVID-19 pandemic impacted the physical and psychological well-being of MS patients. Patients who felt more disabled scored significantly higher in fatigue and sleep quality measures. In-person follow-up is needed to confirm the patient-reported disability worsening.