Psychosocial Effects of the Pandemic on MS Patients at a University Hospital Following Patients with Telemedicine, Cross-sectional Study

Abstract

Introduction:

The psychosocial effect of the pandemic on people with a disease such as multiple sclerosis (MS) that can cause disability and which medications that affect the immune system are used in treatment should be evaluated by physicians. We aimed to determine the psychosocial effects of the pandemic on MS patients and to evaluate the working and treatment continuation status, compliance with pandemic rules, and their perceptions regarding coronavirus disease 2019 (COVID-19).

Methods:

This study was designed as a cross-sectional and descriptive survey study. A total of 315 MS patients’ demographic data, comorbidities, and degrees of disability, Beck Depression Inventory (BDI), Coronavirus Anxiety Scale (CAS), and compliance scores with pandemic restrictions were evaluated.

Results:

In the first period of the pandemic, approximately one-third of the patients were found to have major depression, and approximately 10% to have COVID anxiety. Both COVID anxiety and BDI scores were significantly higher in patients with symptoms suggestive of an attack during the pandemic process (p:0.0001 and p:0.002). CAS was higher in those who had a COVID-19 contact (p:0.045). BDI scores were significantly higher (respectively p:0.034, p:0.006, p:0.0001) in married/cohabiting patients, in patients who went on unpaid leave or lost their job, and in patients who described worsening of their previous MS-related complaints.

Conclusion:

Although the pandemic negatively affects the psychosocial status of MS patients, this effect can be reduced by identifying the groups that may be affected via telemedicine and taking necessary interventions.

INTRODUCTION

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system and often affects young adults (1). In March 2020, the World Health Organization (WHO) declared coronavirus disease, as 2019 pandemic (COVID-19), changing the functioning of health systems and the way health professionals work. Patient follow-up via telemedicine, which has become widespread with the pandemic, has come to the fore in diseases such as MS, requiring routine evaluation and treatment continuity. However, in this process, the follow-up and treatment of many MS patients were interrupted due to social isolation rules and difficulty reaching health centers, along with patient lifestyle and psychological conditions being affected. It has been revealed that the ongoing COVID-19 pandemic has worrisome effects on both individual and societal mental health and social functioning (2). It is possible to predict that prevalence of anxiety and depression are increased compared to pre-pandemic or healthy populations in people with a disease such as MS that can cause disability and in which medications that affect the immune system are used in the treatment. Many studies with various designs have been carried out on this subject, and different results have been reported, both in line with and opposing each other (3–9).

The primary aim of this study is to determine the frequency of depression and coronavirus anxiety in our MS patients, whom we followed with telemedicine in the initial phase of the pandemic. The secondary purpose is to evaluate our patients’ working status, habits, treatment failures, compliance with pandemic restrictions and attitudes related to the pandemic. Through this study, our ultimate goal is to understand our patients’ psychosocial status better and to make necessary interventions (creating a face-to-face examination appointment) by detecting the vulnerable groups in terms of depression and coronavirus anxiety with telemedicine during the pandemic restriction process.

Highlights

• The psychosocial effects of the pandemic on MS patients are determined.

• A total of 315 MS patients participated in the study.

• Coronavirus anxiety was found to be less than expected in MS patients.

• Provided telemedicine from our MS center has been effective.

METHODS

This study was designed as a cross-sectional and descriptive survey study, and an approval was obtained from Ege University Ethics Committe (Approval number: 99166796-050.06.04/ Date: 21.08.2020). Also The Ministry of Health COVID-19 Scientific Research Oversight Committee approved this study. All patients who were followed up with a diagnosis of MS according to the 2017 McDonald diagnostic criteria and did not have an active psychiatric disease were included in the study. The questionnaire prepared with Google Forms was sent to patients online, and informed consent was obtained beforehand. At least six months were allowed to pass from the beginning of the pandemic in Turkey before initiating the study to have the patients’ most up-to-date neurological examination and EDSS (Expanded Disability Status Scale). Demographic information and MS-related history of the patients were obtained from electronic patient records. The survey had 62 questions in total. Following questions about descriptive and demographic information about MS patients, the survey asks about their grievances, such as difficulty in reaching a health institution during the epidemic, treatment interruptions, changes in working status, and their behaviors and attitudes regarding compliance with pandemic restrictions. Finally, the Beck Depression Inventory (BDI) and the Coronavirus Anxiety Scale (CAS) were administered to the participants.

Beck Depression Inventory (BDI)

This is a self-report questionnaire with 21 items that assesses the presence and severity of depressive symptoms (10). Major depression is defined as a score equal to or higher than 17 points. Hisli translated the BDI into Turkish in 1988, based on its reliability and validity findings (11).

Coronavirus Anxiety Scale (CAS)

This is a highly reliable 5-item scale (Cronbach’s alpha=0.93). It has been validated with 775 adults by Lee et al. and confirmed in another study that it is an effective and valid tool in clinical studies. The optimized cut-off score is five with 71% sensitivity and 74% specificity (12). In 2020, Turkish validation was performed by Evren et al. (13).

Pandemic Restrictions Compliance Score

Compliance with the rules of isolation outside the home was evaluated with nine questions, and compliance with the rules of isolation inside the home (related to non-core family guests) was evaluated with eight questions by scoring with: “1, Always complied; 2, Mostly complied; 3, Sometimes complied; 4, Almost never complied.” The minimum score calculated out of a total score of 51 was determined as 0.

Statistical Analysis

The data were analyzed with the IBM Statistical Package for Social Sciences (SPSS) version 25 program. A P value of <0.05 is considered statistically significant. Normal distribution was tested by the Shapiro Wilk test. In the statistical analysis, normally distributed data were compared with the t-test, and the groups that did not show normal distribution were compared with the Mann–Whitney U test. Multiple group analysis was performed with ANOVA for normally distributed groups and the Kruskal-Wallis analysis of variance for non-normally distributed groups. Dunn’s test with Bonferroni correction was used for posthoc analysis. Multiple regression analysis models were created with R ANOVA.

RESULTS

Demographic Data

The questionnaire was answered by 327 out of 600 patients who were followed online in the MS and demyelinating diseases outpatient clinic. Twelve patients were excluded from the study due to a lack of data. Of the 315 patients who participated in the study, 229 (72.7%) were female, and 86 (27.3%) were male, with a mean age of 39.0±11.2 years. The mean EDSS was 2.04±1.88 (minimum: 0 – maximum: 7.5). The mean disease duration was 9.7±7 years. It was determined that 24.4% of the patients had at least one comorbid disease. Considering marital status, 58.7% of the patients were married/living together, 33.7% were single, and 7.6% were divorced/living separately. Among the patients, 59.4% of the them had children (Table 1).

Table 1.

Socio-demographic and clinical characteristics of multiple sclerosis sample

Variables	Statistics (n=315)
Mean age, years (SD)	39.0 (11.2)
Sex (F/M)	229/86
Mean disease duration, years (SD)	9.7 (7.0)
Mean EDSS (SD)	2.04 (1.88)
Marital status, n (%)
Married/living together	185 (58.7)
Single	106 (33.7)
Divorced/living separately	24 (7.6)
Smoking, n (%)
Never smoked/quit smoking before pandemic	191 (60.6)
Still active smoker	94 (29.8)
Quit smoking after pandemic	27 (88.6)
Start smoking after pandemic	3 (1.0)
MS Treatment, n (%)
Subcutaneous or per-oral (apply at home)	218 (69.2)
Intravenous (apply in hospital)	78 (24.8)
Depression, n (%)	97 (30.8)
COVID anxiety, n (%)	31 (9.8)
Pandemic restriction compliance score (SD)	37.6 (8.36)

%: percentage of patients; EDSS: expanded disability status scale; F/M: Female/Male; MS: Multiple Sclerosis; n: Number of patients; SD: Standard deviation.

Depression and Coronavirus Anxiety

The mean BDI score was 12.3±8.84, and 30.8% of the patients were diagnosed with major depressive disorder (≥17 points). There were 31 patients (9.8%) who scored equal to or higher than five on the CAS. According to BDI, the rate of being diagnosed with depression was higher in married/cohabiting individuals (p:0.034). It was observed that having a comorbid disease did not significantly affect BDI and CAS scores. During the first six months of the pandemic, 12 (3.8%) of our MS patients applied to the hospital with the suspicion of COVID-19, and four patients were diagnosed with COVID-19. Coronavirus Anxiety Score scores were higher in patients (n=10) who had contact with people diagnosed with COVID-19 (p:0.045). Depression scores were positively correlated with coronavirus anxiety (r:0.218, p:0.0001) and EDSS (r:0.116, p:0.04) scores, while it was negatively correlated with the education length of the patients (r:0.150, p:0.008). Beck Depression Inventory and CAS scores were not correlated with age and duration of illness. Depression and other factors affecting coronavirus anxiety are explained below under separate headings.

Pandemic Restriction Compliance Score

The mean score of compliance with the restrictions of the patients was calculated as 37.6±8.36 (minimum: 4- maximum: 51). When examined in terms of gender, marital status, having a child, employment status, and comorbid diseases, no differences were found in terms of compliance with restrictions score. Also compliance with restrictions was not correlated with age, EDSS, disease duration, and education period. Furthermore, no significant difference was found in the compliance scores of the patients who applied to the hospital with the suspicion of COVID-19 and those who had contact with people diagnosed with COVID-19 compared to the others (p:0.45, p:0.31, respectively).

Smoking

Considering the smoking habits of the patients during the pandemic process, 60.6% of them had never smoked before or quit before the pandemic, while 29.8% of the patients were pre-pandemic and still active smokers, 8.6% quit after the pandemic started, and 1% of the patients started smoking during the pandemic. Depression scores were significantly higher in the group that continued to smoke than in the group that did not smoke and quit after the pandemic began (p=0.005 and p=0.0001). The CAS scores of those who started smoking after the pandemic were significantly higher than those who continued to smoke and quit after the pandemic (p:0.04 and p:0.03).

Working Status

While 73% of the patients stated that they did not work or received paid leave or had a health report and worked full-time (work status-1) in the first six months of the pandemic, 19.7% stated that they continued working part-time or full-time (work status-2). 7.3% of the patients had to leave their jobs or go on unpaid leave (work status-3). The BDI scores of the patients who quit their jobs or were put on unpaid leave during the pandemic were higher than the others (p:0.006).

MS Treatment Continuity

When the immunomodulatory medications used by our patients due to MS were inquired about, 218 (69.2%) patients were using subcutaneous (SC) or per-oral (PO) treatments that could be applied at home, while 78 (24.8%) patients were using intravenous (iv) treatments administered at the hospitals. Nineteen (6%) patients were not receiving treatment for various reasons (pregnancy, advanced age, treatment change phase). Treatment continuity and regimen changes in the first six months of the pandemic were also evaluated. 89.4% of patients with home-use SC/PO treatments used their medication on a regular basis, 5.1% changed or stopped their frequency of use at the doctor’s recommendation, and 5.5% quit or used their medication irregularly. Among the patients who received treatment in a hospital, 62.8% of them used their medication on a regular basis. In comparison, 35.9% of patients had their medication dose delayed on the doctor’s advice, and 1.3% chose not to take the medication without consulting their doctor.

COVID-19 Perception of MS Patients

When the impact of COVID-19 on our patients’ perspectives of their diseases and treatments was observed, 63.5% of patients perceived MS as a risk factor for COVID-19 infection, while only 27.9% thought that the medication they used for MS posed a risk. There were no significant differences between patients who thought that MS or medication was a risk factor and those who did not, regarding adherence to restrictions, BDI and CAS scores.

Attaining Health Services

In this evaluation made at the beginning of the pandemic, most of our patients (90.8%) stated that they had no difficulty attaining healthcare services. The group stating that they could not reach healthcare personnel, had a lower compliance score (p:0.028), and there was no significant difference in terms of depression (p:0.42) and coronavirus anxiety (p:1.00).

Exacerbation and Worsening of MS-related Symptoms

During the pandemic, 68 (21.6%) patients reported worsening of their MS-related symptoms, and 83 (26.3%) patients reported having symptoms suggestive of an attack. Among those 83 patients, 92.8% (n=77) of them stated that they could talk to their physician if they said their situation was urgent during the pandemic, but 56.6% contacted their physicians for these complaints. Among the patients (n=47) who reported new symptoms suggestive of an attack to their doctors, 46.2% (n=22) of them were diagnosed with an attack, and 14 patients received iv methylprednisolone treatment. CAS and BDI scores were significantly higher in patients with symptoms suggestive of an attack during the pandemic period (p:0.0001 and p:0.002, respectively). Depression scores were significantly higher in patients who described worsening in their previous MS-related complaints (p:0.0001).

Regression Analysis

Linear regression analysis was performed to gauge the combined impact of variables which were found to be correlated with the scores of BDI and CAS. Results of the regression analysis denoting association are presented in Table 2 and 3.

Table 2.

Regression analyses of variables that have significant association with Beck depression inventory scores (R²=0.176)

Independent variables	P	Odds ratio	95% CI
Education duration (years)	0.012	-0.293	-0.520 – -0.066
Work status -1*	0.002	-5.607	-9.164 – -2.050
Work status -2*	0.009	-5.286	-9.261 – -1.310
Having symptoms suggestive of an attack	0.004	3.817	1.193 – 6.440
Worsening of MS related symptoms	0.026	3.218	0.390 – 6.046

^*Work status -1: not need to work, work at home or allowed to not work with full/half payment during the pandemic; Work status -2: continue to work full or part time. CI: confidence interval; MS: Multiple Sclerosis.

Table 3.

Regression analyses of variables that have significant association with Coronavirus anxiety scores (R²=0.116)

Independent variables	P	Odds ratio	95% CI
Contact with COVID-19 diagnosed person	0.033	1.656	0.137–3.175
Having symptoms suggestive of an attack*	<0.001	1.392	0.639–2.145

^*Patients who reported to their physicians that they had new symptoms suggestive of an attack. CI: Confidence interval; COVID-19: Coronavirus-19 Disease.

DISCUSSION

Through this cross-sectional study, the mood and reactions of MS patients were evaluated in the initial period of the pandemic when uncertainties prevailed. Major depression (BDI≥17 points) was detected approximately one-third of our patients, and approximately 10% had coronavirus anxiety in this study. Many studies have been conducted investigating the psychosocial status of MS patients during the pandemic. It has been shown that they are a more sensitive group and have higher levels of depression and anxiety compared to the healthy population (6–9). Contrary to these, in a study from Italy in which the anxiety, depression, and quality of life of 67 MS patients were assessed before and after the pandemic, there was no worsening in anxiety and depression but rather an improvement in sexual activity and social functioning (4). In a study evaluating the fear of attacks, social support, and psychological well-being of 165 MS patients during the pandemic, the fear of attack scores were significantly higher in those with low social support, and the fear of attacks increased significantly as the depression anxiety stress score increased (7). In another study investigating depression, anxiety, and fear of COVID-19 in MS patients, depressive symptoms were more common in people who were separated from their spouses, had more hospital admissions due to MS attacks, had a low education level, and had a high fear of COVID-19 (3). In a study conducted in the United Kingdom (UK), where the mental health of over 2000 MS patients during the pandemic was evaluated, the Hospital Anxiety and Depression Scale (HADS) scores during the quarantine period did not differ significantly compared to one year prior, but MS patients were more prone to depression and anxiety than the healthy population. The importance of multidisciplinary approaches was emphasized to increase the well-being and social support of patients (5). In this study, conducted at the start of the pandemic, roughly one-third of our patients had major depression and 10% had coronavirus anxiety. Unsurprisingly, CAS scores were found to be significantly higher in our patients who had contact with someone with COVID-19 infection. Depression scores had a positive correlation with CAS and EDDS and a negative correlation with education. Age, gender, disease duration, and co-morbidity were not correlated with depression and coronavirus anxiety scores. With reference to many studies mentioned above, it is taken that patients with MS may be more sensitive to anxiety and depression during the pandemic process, while it is known through the increase in experience from our country (14). Although immunomodulatory/immunosuppressive medications used in the treatment of MS do not pose a risk in terms of COVID-19 infection, the lack of information and data at the beginning of the pandemic may be said to have contributed greatly to this sensitivity. The relatively low level of coronavirus anxiety (9.8%) in our patients could be attributed to the telemedicine method used in our center since the beginning of the pandemic, as well as information transfer from social media to our MS group.

When the smoking habits of the patients are evaluated, it is seen that approximately one-third of those who were smokers before the pandemic quit smoking during this period. Similarly, in the UK MS Register study, it was seen that approximately half of the smokers reduced the number of cigarettes in this period (5). This result was associated with reviving the negative effects of smoking on both MS and COVID-19 infection, especially on social media. The fact that coronavirus anxiety is significantly higher in those who did not smoke before and started after the pandemic, while seeming paradoxical, can be interpreted as a negative result of anxiety. In a study evaluating depression, anxiety, and fear of COVID-19 in MS patients during the pandemic in Iran, no significant difference was found between smokers and non-smokers. In the same study, it was determined that the fear of COVID was significantly higher in married patients compared to single patients. In our research, there was no difference in terms of coronavirus anxiety, but the rates of depression were found to be significantly higher in those married/living with a partner (14). Although not specifically addressed in our study, it has been reported that domestic violence increased globally during the pandemic (15). It was thought that this result might be related to increased depression in those married/living with a partner, as in our study.

Considering the working status of the participants, it was found that 80% of the patients took a break from their work with or without pay, and those who took unpaid leave or lost their job had significantly higher depression scores. In a study conducted in Italy, where the effects of the pandemic on working status were also evaluated, the working style of 39.1% of MS patients changed, and 64.7% of them had a negative effect as a result of reducing their working hours. Also, in this study, BDI scores were significantly higher in the unemployed group (6).

When the persistence of MS-specific treatment is evaluated, although nearly 90% of those who use SC/PO medications at home continue their treatment regularly, only 62.8% of the patients using medications in the hospital could continue their treatment regularly due to difficulties in reaching the hospital during the pandemic and the risk of infection. Considering the treatment regimen change, it was seen that 5.1% of the SC/PO medication users changed the frequency of use with the recommendation of a doctor, and 35.9% of the patients receiving infusion treatments had their treatment postponed by the doctor’s recommendation. In a survey of specialist physicians conducted at the start of the pandemic, 98% stated that the pandemic had disrupted their clinical practice, and 88% stated that there had been a change in the health care of MS patients due to the pandemic’s urgency (16). In this period, when outpatients were restricted worldwide, telemedicine methods came to the fore (17). In our center, where telemedicine has been actively used as of April 2020, 90.8% of our patients stated that they had no difficulty in reaching healthcare personnel. In addition, it was observed that a small percentage of our patients, such as 5.5% using SC/PO medication and 1.3% receiving hospital treatment, discontinued their medication without consulting their doctor. In the survey conducted with the participation of neurologists from the United States of America and Canada at the same time as our study, 23% of MS specialists stated that they noticed that their patients had discontinued their disease-modifying treatments on their own accord (18). Another study showed that 15.9% of the patients discontinued their medication, and 35.2% did not receive their infusion dose (19).

In the above-mentioned study (19), it was determined that 46% of the patients were anxious about taking their medications. In a recently published multicentric study evaluating the socioeconomic and psychological effects of the COVID-19 pandemic in over 3000 MS patients from our country, it was shown that 61.5% of the patients had their routine follow-ups disrupted and 14% discontinued their MS-specific treatments. It has been reported that approximately one-third of those who discontinued their MS treatment were on the decision of a physician, and approximately one-fifth of them discontinued their medication on their own decision (20). In our study, only 27.9% of our patients considered the medication they were using as a risk for COVID-19 infection; therefore, compared to other studies, the high treatment continuity in our patients was thought to be associated with this outcome. There was no significant difference in terms of depression and coronavirus anxiety scores between those who thought that MS or their medications posed a risk and those who did not.

In our study, an increase in MS-related symptoms during the pandemic period or a complaint suggesting a new attack were also inquired about. Nearly one-fifth of our patients stated that their current symptoms worsened, while one-fourth of the patients stated that they had a new complaint suggestive of an attack. Although 92.8% of patients with complaints suggestive of an attack stated that they could reach their physician, while only 56.6% of them contacted their physician for these complaints. It was postulated that this result might be related to the significantly higher coronavirus anxiety and depression scores in patients with symptoms suggestive of an attack. A study comparing the stress level, depression, and social support of more than 600 individuals with MS during the pandemic with healthy controls showed that the stress level and depression were higher in MS patients, which worsened their neurological complaints (21). In our study, depression scores were significantly higher in patients who described worsening of their previous MS-related complaints. Similarly, according to a multicenter study in which centers from six countries participated, depression and anxiety were significantly higher in patients who thought they had disease progression and had difficulty in reaching the center where they were treated (22).

Regression analysis revealed that higher education duration and stability in the working status led to lower depression scores. Consistently, a study regarding women suffering from breast cancer found that the threat to job security during the pandemic was predictive of depression (23). In parallel to our results, a study conducted in Iran demonstrated that depressive symptoms were more common in MS patients with lower education level during the COVID-19 pandemic (3). On the other hand, we found that having symptoms suggestive of an MS attack or worsening of the MS symptoms were predictors of higher depression scores. Besides, having symptoms suggestive of an MS attack was predictive of higher coronavirus anxiety. Consistent with our results, a multicenter study from the Ibero-American region found higher levels of anxiety and depression among patients with the subjective experience of MS disease progression (22). Another predictor for coronavirus anxiety was having contact with a COVID-19-diagnosed person. Similarly, a study from Turkey showed that medical students who were exposed to a COVID-19 patient were more anxious than their counterparts (24). However, these regression analysis results should be interpreted with caution because our models had explained a variation of 17.6% for BDI and 11.6% for CAS.

Several limitations were present throughout this study, during which we evaluated the initial reactions of the first six months of the pandemic. It was possible to only reach half of the targeted MS population within the scope of this study. Only event-related anxiety was evaluated in the study, while general anxiety was not evaluated. The online application of the questionnaires and the fact that they were self-report questionnaires reduce their reliability, but the study was planned to minimize the frequent visits and hospital stays for the patients at the beginning of the pandemic period. Besides, having no control group is another limitation.

Through this study we have a better understanding of the psychosocial status of our patients under pandemic conditions and had the opportunity to improve the health service we provide according to their needs. The results also showed that telemedicine service is a support service for patients when it is difficult to reach a physician. In conclusion, despitethe uncertainties in the first period of the pandemic, coronavirus anxiety was detected at a lower rate than expected in MS patients. It is thought that the follow-up and informing patients with telemedicine applied in our center from the first days of the pandemic provided this result. Additional recommendations should be developed in order for patients who think they have had an attack during the pandemic to reach the doctor faster, and a treatment approach should be provided for individuals who are sensitive to anxiety and depression.