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.

Background

Therapeutic inertia is defined as a failure to initiate or intensify treatments despite clinical and paraclinical evidence of disease activity. Its prevalence and determining factors in Relapsing-Remitting Multiple Sclerosis (RRMS) patients in Portugal are not known.

Objectives

Our primary goal was to determine the frequency of therapeutic inertia in our RRMS patients; our secondary goal was to describe therapeutic inertia predisposing factors.

Methods

A multicentre retrospective observational study was performed. We studied patients with RRMS followed in MS Clinics of six Portuguese hospitals with at least one medical appointment during the study period (January 1^st to December 31^st 2018).

Results

We included 427 patients with RRMS, 69.6% females, with a mean age of 41.66 years-old and a mean age at diagnosis of 33.17 years-old. The average number of years since diagnosis was 8.72. MS relapses were reported on 54 patients. Median EDSS score was 1.5 (IQR=1.5). Among the 365 patients who underwent MRI during the study period, 23.8% had new T2 lesions and 7.4% had lesions with contrast enhancement. Therapeutic inertia was present in 80 patients, representing 18.7% of the total sample and 54.8% of the patients with potential to inertia (indication for treatment escalation). Patients with no more than one new T2 lesion, no gadolinium-enhancing lesions, already on a DMT, without adverse events from their current DMT and who were followed in higher care level centres were more likely to have therapeutic inertia (p<0.05). In a binary logistic regression model, the current treatment with DMT (p=0.050), the absence of adverse events (p<0.001), the higher care level (p=0.015) as defined in the Hospital Referral Network in Neurology, and the absence of relapses (p=0.021) or the presence of mild relapses (p=0.027) had an independent effect in therapeutic inertia.

Conclusions

Therapeutic inertia was present in about 1 in 5 patients, exceeding half of the population when considering all the patients with potential to inertia. The subgroup of patients with indication for therapeutic escalation and which also have less active radiological disease was associated with more therapeutic inertia, although these results were not confirmed in a multivariate analysis. Attending a higher care level center, being under DMT, absence of adverse events, and having none or mild relapses, were determining factors for therapeutic inertia.

We believe this study raises awareness to therapeutic inertia as an important problem, providing further knowledge on predisposing factors that may be adressed in MS care.