Multiple Sclerosis is a neurodegenerative and inflammatory illness diagnosed in young adults. Domiciliary confinement for the Sars-Cov-2 pandemic was a situation that generated isolation, lack of activity and an alteration of sanity and associative services. This diminution of activity could generate an alteration on this health and quality of life.
ObjectivesThe aim of this study is to know changes in physical, cognitive, emotional and social states in patients from the Balearic Association of Multiple Sclerosis during confinement of Sars-Cov-2 pandemic. In addition to describe the adaptations of health and associative resources during this period.
MethodologyCross-sectional descriptive study. All ABDEM patients diagnosed with MS were included. An ad-hoc questionnaire with Likert-type response options was administered.
ResultsA total of 102 surveys were obtained. 69.6% of the participants were women, 49% aged 35−44 years, mean age 41.3 (10.9). 48% were in active employment and 47.1% had been diagnosed with the disease for between 3 and 10 years, mean 11.2 (8.3). 23.3% showed worsening fatigue, 13.4% greater mobility disturbances and 14.8% more pain. 21.1% had increased concentration problems. 11.3% had symptoms of anxiety. Hospital service adaptations were evaluated with 94.9% satisfaction, primary care with 88% and ABDEM with 97.9%.
ConclusionThis study described an alteration in physical, cognitive, emotional and occupational symptoms during the confinement phase of COVID. MS patients require cross-cutting care plans that can meet their needs despite crisis situations such as those experienced during the pandemic.
The different adaptations made by health services and associations working with people with MS were also presented. These services responded satisfactorily to the needs shown by patients in confinement. Nevertheless, it is important to analyse these situations so that health organisations can respond to the needs of patients in times of crisis.
La esclerosis múltiple (EM) es una enfermedad neurodegenerativa y desmielinizante, diagnosticada en adultos jóvenes. La situación de confinamiento por la pandemia de Sars-cov-2 supuso una situación de aislamiento y falta de actividad además de una alteración de los servicios sanitarios y asociativos. La disminución de la actividad tanto física como cognitiva podría derivar en una alteración en su salud y calidad de vida.
ObjetivosConocer las variaciones en el estado físico, cognitivo, emocional y social de los pacientes de la Asociación Balear de Esclerosis Múltiple (ABDEM) durante el confinamiento por la pandemia de Sars-Cov-2. Describir las adaptaciones de los recursos sanitarios y asociativos en este período.
MetodologíaEstudio descriptivo transversal. Se incluyó a todos los pacientes diagnosticados de EM de ABDEM. Se administró un cuestionario ad-hoc con opciones de respuesta tipo Likert.
ResultadosSe obtuvieron 102 encuestas. Un 69,6% de los participantes eran mujeres, un 49% de 35–44 años. La media de edad fue de 41,3 (10.9). Un 48% estaban en situación laboral activa y un 47,1% llevaban entre 3 y 10 años de diagnóstico de la enfermedad, con una media de 11.2 (8.3). Un 23,3% mostraron empeoramiento de fatiga, un 13,4% mayores alteraciones de movilidad y un 14,8% mayor dolor. Un 21,1% incrementaron problemas de concentración. Un 11,3% tuvieron síntomas de ansiedad. Las adaptaciones de servicios hospitalarios fueron evaluadas con un 94,9% de satisfacción, los de atención primaria con un 88% y ABDEM con un 97,9%.
ConclusiónEste estudio describió una alteración en los síntomas físicos, cognitivos, emocionales y laborales durante la fase de confinamiento del COVID. Los pacientes con EM precisan de planes de cuidados transversales que puedan cubrir sus necesidades incluso de las situaciones de crisis como las vividas por la pandemia.
También se conocieron las diferentes adaptaciones que hicieron los servicios sanitarios y asociativos que trabajan con personas con EM. Estos servicios respondieron satisfactoriamente a las necesidades que mostraron los pacientes en el confinamiento. Pese a ello, es importante analizar estas situaciones para que las organizaciones sanitarias puedan responder a las necesidades de los pacientes en tiempos de crisis.
Multiple sclerosis (MS) is a chronic, autoimmune, demyelinating, and degenerative disease of the central nervous system. It is estimated that around 55,000 people in Spain have this disease, which is mainly diagnosed in adults between the ages of 20 and 40. This makes MS the disease that causes the most disability in young adults.1
The most common form of MS is relapsing-remitting, in which the activation of the inflammatory process that causes myelin loss is commonly referred to as a 'flare-up'. The initial goal of drug therapy is to control this activity in order to slow down flare-ups and thus prevent cumulative disability.2 This disease presents a variety of symptoms, the most common of which are motor, sensory, or visual disorders. Fatigue, cognitive impairment, balance issues, spasticity, urinary problems, and sexual dysfunction are also very common.3
Therefore, although these patients have different individual characteristics, they share the fact that physical activity and cognitive stimulation can improve their clinical condition, quality of life, and emotional health.4
There are various instruments for measuring the consequences of the disease. One notable example is the Expanded Disability Status Scale, which measures the cumulative disability caused by MS and has been adapted to Spanish.5
Following the identification of the SARS-CoV-2 virus in China6 in January 2020 and its subsequent global spread, Spain declared a state of emergency on 14 March 2020. This required the population to remain in lockdown at home to contain spread of the virus and mitigate its health impact.7 The SARS-CoV-2 pandemic resulted in structural changes in the healthcare system to adapt services and maintain adequate care for chronic patients.
Lockdown resulted in isolation and lack of activity, with physical, cognitive,8 and emotional consequences, as well as consequences for social relationships. There were also concerns about the economic and employment situation resulting from lockdown.9 A similar situation was observed for other neurodegenerative diseases, such as Parkinson's, which were associated with a decline in quality of life and increased levels of anxiety, stress, and depression.10
The situation required the reorganisation of primary care, with the creation of various circuits for face-to-face, telephone, and home care to support chronic patients. Emergency care was maintained, and patients with respiratory disease were monitored at home, among other measures.11 Hospital consultations also closed to face-to-face visits and telephone care was centralised for neurological patients, among others. The hospital pharmacy and day hospital services circuits were changed.
The Balearic Multiple Sclerosis Association (ABDEM) offers services for patients in the early stages of diagnosis when they enter a phase of stability and chronicity, where a multidisciplinary team addresses any personal difficulties in the autonomy care programme. It also has a day centre offering comprehensive support to people with extensive and generalised support, providing respite to their families and direct carers, and other volunteer programmes, accompaniment, and even housing support programmes. This team of professionals also adapted to the new situation and provided telematic care, as well as offering information to members and monitoring their needs virtually.12
A lack of physical and cognitive activity can affect people with this condition, impacting both the disease itself and the social and work situations that the lockdown and vulnerability in the labour system could have triggered.1 This study aims to explore how lockdown and the impact of the pandemic on the healthcare system may have affected people with MS.
ObjectivesThe aim is to assess changes in the physical, cognitive, emotional, social, and employment status of people with MS during the period of lockdown due to the SARS-CoV-2 pandemic.
The study also aimed to determine how patients with MS used health and association services during the lockdown and how satisfied they were with these services' responses.
MethodA descriptive cross-sectional study was conducted. All ABDEM members diagnosed with MS and aged over 18 were invited to participate. A Google Forms® questionnaire was created and sent to the association's 328 patients. Along with the questionnaire link, participants received the study information sheet and informed consent form. Data collection took place in June 2020, when the lockdown restrictions were being eased.
The variables were classified into the following categories:
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Sociodemographic and disease-related factors: sex, age, employment status, household members, need for adapted housing or carer. MS diagnosis: degree according to EDSS scale, disease-modifying drug, years of progression, types of physical or cognitive symptoms that increased during lockdown, onset of flare-ups and therapy adherence.
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Physical, cognitive, and emotional health changes: symptoms of fatigue, mobility problems, sensitivity, pain, urinary and faecal continence problems, sexual problems, concentration and processing speed problems, fear of flare-ups or COVID-19 infection, difficulty maintaining habits. The GAD7 scale was also used to measure anxiety.13
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Socio-occupational situation: sick leave, temporary redundancy plan (ERTE), adaptations, or dismissals.
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Health and association services: type of consultation (telephone or in person), access to medication, access to virtual psychological therapy or physiotherapy. Final degree of satisfaction with health and association services.
In terms of statistical analysis, a descriptive analysis of the variables was performed. Information on qualitative variables is presented using absolute and relative frequencies (percentages), while quantitative variables are presented using means and standard deviations. The analysis was performed using IBM SPSS Statistics v26 statistical softwarev26.
The study was conducted in accordance with the principles of the Declaration of Helsinki and the ICH guidelines for good clinical practice, and in full compliance with the relevant legal authorities. Processing, communicating, and transferring the personal data of all participating subjects complied with the provisions of Organic Law 3/2018 of 5 December on the protection of personal data and the guarantee of digital rights. Approval was obtained from both the Primary Care Research Commission of Mallorca and the Research Ethics Committee of the Balearic Islands (approval number IB 4260/20).
ResultsA total of 102 people responded to the questionnaire (31% of those invited to participate). The majority of participants were women (69.6%) and the mean age was 41.3 (10.9). The most prevalent age group was 35−44 (49%). Many of these people were in active employment at the time of the study (48%) and lived with several people (71.6%). Only 18.6% needed a carer or home adaptations (4.9%), as shown in Table 1.
Sociodemographic and household data.
| Sociodemographic data | N (%) |
|---|---|
| Sex | |
| Female | 71 (69.6) |
| Male | 31 (30.4) |
| Age | |
| Under 35 | 21 (20.6) |
| 35−44 | 50 (49.0) |
| 45−54 | 19 (18.6) |
| 55 or over | 12 (11.8) |
| Employment status | |
| Active | 49 (48.0) |
| Unemployed/temporary redundancy plan/on sick leave | 23 (22.5) |
| Disability/other | 30 (29.4) |
| People in the household | |
| Alone | 8 (7.8) |
| <3 people | 73 (71.6) |
| ≥3 people | 21 (20.6) |
| Housing adaptation | |
| Fully adapted | 5 (4.9) |
| Minor adaptation | 17 (16.7) |
| No adaptation | 80 (78.4) |
| Assistance with activities of daily living | |
| Considerable assistance | 19 (18.6) |
| Minimal assistance | 10 (9.8) |
| No assistance | 73 (71.6) |
In terms of therapy, almost half of the patients were taking a second-line drug (49%), which is administered in hospital, and a quarter of them were not taking a disease-modifying therapy (24.5%). Of the participants, 47.1% had been diagnosed between 3 and 10 years ago, 40.2% more than 10 years ago, and 12.7% less than 3 years ago. The mean number of years since diagnosis was 11.2 (8.3). One-third (34.7%) of the sample had a disability with and EDSS score greater than 4. Eight-point eight percent required medication for motor symptoms and 4% for spasticity (Table 2).
Clinical characteristics of the disease.
| Data on multiple sclerosis | N (%) |
|---|---|
| Disease-modifying therapy for MS | |
| 1st line | 27 (26.5) |
| 2nd line | 50 (49.0) |
| No disease-modifying medication | 25 (24.5) |
| Duration of MS | |
| <3 years | 13 (12.7) |
| 3−10 years | 48 (47.1) |
| >10 years | 41 (40.2) |
| EDSS score | |
| ≤4 | 32 (65.3) |
| >4 | 17 (34.7) |
| Disease situations | N (%) |
|---|---|
| Requirement for isolation | |
| Yes | 35 (34.7) |
| No | 66 (65.3) |
| Medication for motor symptoms | |
| Yes | 9 (8.8) |
| No | 93 (91.2) |
| Medication for spasticity | |
| Yes | 4 (4.0) |
| No | 97 (96.0) |
The physical symptoms that increased the most during lockdown were fatigue (23.3%), strength problems (15.5%), pain (14.8%), and mobility problems (13.4%). The most notable cognitive symptoms were concentration (21.1%) and processing speed problems (19.1%). The most relevant emotional disturbances were uncertainty about their employment situation (37.1%), concern for the health of a family member (35.4%), being unable to leave the house (31.3%), and not having loved ones nearby (30.9%). Fear of being unable to access healthcare services in the event of a flare-up was reported by 14.7% of respondents. The GAD-7 anxiety scale revealed that 11.3% of participants experienced severe anxiety, while 55.7% reported anxiety at some point during the lockdown (Figs. 1 and 2).
Table 3 shows the different work situations resulting from lockdown. Twenty-four point three per cent needed work adjustments, although only 50.7% of them were provided these adjustments by their company. Forty-two per cent worked from home, and of these, 16% obtained the necessary tools from their company. As for temporary redundancy (ERTE), 20.8% found themselves in this situation, and 2.8% faced dismissal.
Work-related changed during lockdown.
| Work situations | Yes | No |
|---|---|---|
| N (%) | N (%) | |
| Need for work adaptation | 17 (24.3) | 53 (75.7) |
| Adaptation by the company | 34 (50.7) | 33 (49.3) |
| Telework | 29 (42.0) | 40 (58.0) |
| Tools for telework | 8 (16.0) | 42 (84.0) |
| Temporary redundancy situation | 15 (20.8) | 57 (79.2) |
| Dismissal situation | 2 (2.8) | 70 (97.2) |
Table 4 shows the use of health and association services by participants during the study period, as well as their satisfaction with the response of these services. In terms of hospital setting, 88% of the participants were able to contact the neurology nurse without any problems, and 81.3% the neurologist. Eighty-four point four per cent contacted the pharmacy service and 86.8% continued to take their medication as prescribed. Seven percent suffered a flare-up during lockdown, and of these, 66.7% were able to be treated quickly by the neurology service. Five point nine per cent required rehabilitation/physiotherapy. Twelve point nine per cent thought that the problems that arose were related to the recommendation not to go to hospital during the pandemic. Ninety-four point nine per cent were satisfied with the care they received from hospital professionals. With regard to primary care, care was preferably provided by telephone. Sixty per cent needed to contact their doctor or nurse, and of these, 76.7% had no problem doing so. The consultations were to resolve issues related to both electronic prescription renewals (54.9%) and medication for MS symptoms (39.4%), to request sick leave (25.8%), and to collect medication from the health centre (25.5%). Only 6.3% required a home consultation. Satisfaction with the care received in primary care was positive in 88% of cases. As for the services provided by ABDEM, a quarter of the patients required psychological therapy (24.7%), which was mainly provided by telephone (72.1%) or videoconference (46.9%). Those who needed physiotherapy (35.8%) received it via videoconference (48.9%), with 10.6% of video calls reporting difficulties in carrying it out, or needing help from a carer (34.9%). To keep the population informed, an information campaign (92.2%) was carried out via email (30%) and social media (88.5%). There was a high level of satisfaction with the services provided by ABDEM (97.9%).
Use of and satisfaction with hospital services, PC, and ABDEM.
| Hospital services | Yes | No |
|---|---|---|
| N (%) | N (%) | |
| Need to go to day hospital | 25 (24.8) | 76 (75.2) |
| Need for a family member to go to the hospital pharmacy | 37 (37.8) | 61 (62.2) |
| Contacting the pharmacy with questions about treatment | 65 (84.4) | 12 (15.6) |
| Correct therapeutic adherence | 79 (86.8) | 12 (13.2) |
| Request for home delivery of medication | 17 (26.6) | 47 (73.4) |
| Use of neurology consultation | 65 (81.3) | 15 (18.8) |
| Use of neurology nurse consultation | 73 (88.0) | 10 (12) |
| Satisfaction with hospital services | 75 (94.9) | 4 (5.1) |
| Primary care services | Yes | No |
|---|---|---|
| N (%) | N (%) | |
| Use of primary care team consultation | 60 (60.0) | 40 (40.0) |
| Telephone consultation | 56 (76.7) | 17 (23.3) |
| Collection of MS medication at the health centre | 13 (25.5) | 38 (74.5) |
| Renewal of medication via electronic prescription | 37 (39.4) | 57 (60.6) |
| Need for sick leave | 23 (25.8) | 66 (74.2) |
| Home visit | 6 (6.3) | 89 (93.7) |
| Telephone consultation with nurse | 8 (10.8) | 66 (89.2) |
| Satisfaction with primary care services | 74 (88.0) | 10 (12.0) |
| ABDEM resources | Yes | No |
|---|---|---|
| N (%) | N (%) | |
| Use of psychological therapy | 24 (24.7) | 73 (75.3) |
| Therapy via videoconference | 23 (46.9) | 26 (53.1) |
| Therapy via telephone | 31 (72.1) | 12 (27.9) |
| Physiotherapy | 34 (35.8) | 61 (64.2) |
| Physiotherapy via videoconferencing | 23 (48.9) | 24 (51.1) |
| Received information about COVID and resources | 91 (92.9) | 7 (7.1) |
| Information received by email | 27 (30.0) | 63 (70.0) |
| Information received via social media | 85 (88.5) | 11 (11.5) |
| Satisfaction with ABDEM services | 95 (97.9) | 2 (2.1) |
This study evaluated changes in the physical, cognitive, emotional, and social status of people with MS belonging to the ABDEM association, as well as their opinions on the response of health services to the lockdown situation caused by the SARS-CoV-2 pandemic. The data reveal changes in the perception of fatigue, mobility problems, and some cognitive problems. In the social sphere, there were moments of anxiety or changes in adapting to the workplace. Satisfaction with health services and the association was high, indicating a high level of resilience within our setting.
As in the study by Zabay-Neiro et al.,14 which covers a similar population at the Multiple Sclerosis Foundation in Lleida, the vast majority of the study population is young, with little disability, and an active employment status.
Of all the physical alterations reported, the increase in fatigue (23.3%) and mobility problems (13.4%) are particularly notable. When compared with the sample in the study by Zabay-Neiro et al., we see that this manifestation is relevant, as they report fatigue in 50%–70% of cases and relate it to physical activity. Cardiovascular and resistance exercise is very useful for alleviating fatigue if performed in combination, as can be seen in this meta-analysis published in the journal Archives of Physical Medicine and Rehabilitation.15 Despite the lockdown, ABDEM continued to offer online exercise programmes tailored to different groups of patients according to their functionality. The perception of chronic pain also increased, by up to 14.8%. Other studies relating to lockdown and pain, such as that by Luque-Pérez et al.,16 link decreased physical activity with increased pain and low perception of quality of life one year after lockdown. This phenomenon is also described in meta-analyses such as that by Thibaut Demaneuf et al.,17 which emphasise exercise as a way of improving chronic pain. In our study, we measured the increase in pain during a period of low physical activity, so the increase in pain could be related to the low level of physical activity undertaken during lockdown.
Concentration and processing speed problems increased in around 20% of the sample. Comparing these results with other studies of the Spanish population during lockdown, such as that by Giménez -Llort et al.,18 which found 15.1% of patients with cognitive fatigue, we conclude that in these circumstances, cognitive problems in MS may be exacerbated by increased fatigue.
Lockdown also caused mental health problems. Anxiety (11.3%), fear of infection (29.9%), and lack of desired healthcare (26.8%) affected the patients in the study. This phenomenon was observed in the two aforementioned Spanish studies, and as well as in cross-sectional primary care19 and public health20 studies.
The potential consequences of the pandemic could have on the workplace were also a major concern for the patients surveyed. Studies such as that by Zhang et al.21 measured workplace changes at a general level, recording 15% in the Spanish population compared to 19.2% in the Chinese population. In our study, we examined the work-related changes found, observing that 50.7% of these people required work adaptations and 42% required teleworking. Only 2.8% were dismissed, and 20% reported a temporary redundancy plan. Supporting the workplace integration of people with MS is part of modern care strategies, as demonstrated by the MS International Federation.22
Overall satisfaction with hospital services was observed (94.9%). Many patients needed to attend the hospital on a daily basis (24.8%), where most MS drugs with immunosuppressive effects are administered. We consider this an important factor, as other studies, such as that by Lleixa Sarda et al.23 reported that 35% of the cases surveyed had missed their intravenous medication appointments, and 15% had discontinued their immunomodulatory therapy. In our study, we found similar data on therapy adherence, with only 13.2% of cases reporting that it was not followed correctly. The use of neurological nursing consultations was high (88%), also shared with neurology consultations in 81.3% of cases. Seven per cent of respondents reported having had an MS flare-up during lockdown. These phenomena are consistent with the aforementioned study, in which telephone service hours were extended and hospital visits were reorganised so that all consultations could be carried out on the same day. Regarding other situations within hospitals, 37.8% of respondents needed a family member to go to the hospital for them to collect medication, and 84.4% needed concerns addressed. In other autonomous communities, pharmacy services developed a home delivery service for medication, as detailed in the study by Peláez Bejarano et al.24 so that chronic patients could have access to hospital-dispensed drugs during lockdown.
Satisfaction with primary care was high, with 88% of respondents expressing satisfaction. The tools that stood out were mainly telephone consultations (76.7%) and automatic renewal of electronic prescriptions (39.4%). These tools were adopted by primary care centres during the pandemic, as reported in the study by Coll Benejam et al.25 This study highlights the structural changes that had to be made in health centres.
Patient associations played a significant role in providing support and advice, a role that was amplified during the COVID-19 pandemic. In fact, other associations, such as that in Granada (AGDEM), also assessed the impact of lockdown, as seen in the study by Ruiz-Maresca et al.,26 which evaluated the changes that occurred in the association's patients during the first 30 days of lockdown. At ABDEM, as in all institutions and entities, telematic work was prevalent, both for psychological interventions, in 24.7% of cases, and for rehabilitation therapies, in 35.8% of cases. Studies such as that by Zabay-Neiro et al., mentioned above, also used these services. At ABDEM, they also received information on COVID-19-related situations specific to MS, as there was a great deal of fear of contagion at the beginning of the pandemic. The association responded and adapted to the pandemic swiftly and decisively, achieving the highest user satisfaction of the three services evaluated, at 97.9%.
Several international studies have been conducted to assess the impact of the lockdown on the quality of life of MS patients. One example is the study carried out by Henson et al.27 with the Australian MS longitudinal study cohort, which measured COVID-19-related adversity in relation to their health status and the Assessment of Quality of Life--Eight Dimensions (AQoL-8D). A total of 1666 participants responded. It was observed that the severity of disability was strongly associated with higher adversity ratings (P < .01).
A notable strength of our study is that it was carried out by the primary care management of the Balearic Islands Health Service in collaboration with ABDEM, a patient association with experience and commitment. Over the years, synergies have been created between the two institutions, such as collaboration on the Pacient Actiu programme28 and various jointly held awareness-raising conferences on the disease. This has meant that when requesting support for the study, the relationship between both institutions has been strengthened and an alliance created for future projects. We believe it is important to highlight this, as the plans to humanise the healthcare system propose putting the patient at the centre of the system,29 and having a patient association contributes to this. Another strength worth highlighting is the role of nurses in neurology services, as there was a great deal of uncertainty about how COVID-19 infection could affect patients with MS, and the management of the disease and support provided them by these professionals during those stressful times was remarkable.23
The limitations of this study include the information biases inherent in survey methodologies, such as inaccurate recall or misleading responses. As this is a descriptive cross-sectional study, it is not possible to explore the relationship between variables in depth or to measure the real impact of change as would be possible a longitudinal study. As this study describes a specific sample, the conclusions drawn are limited to that sample and cannot be extrapolated to other populations in different contexts.
ConclusionThis study has shown how MS patients from the ABDEM association experienced different situations during the lockdown period in terms of their health status and use of health and association services.
The symptoms that increased most during lockdown were fatigue, pain, mobility problems, and cognitive fatigue. Anxiety caused by being isolated at home was the main trigger for emotional problems, with fear of infection or lack of healthcare being the most prominent factors. In the workplace, adjustments such as teleworking were implemented, and there were few cases of temporary redundancy plans or dismissals.
Healthcare services adapted consultations and day hospital services, as well as other related hospital services, to the great satisfaction of patients. Primary care also changed, with telephone consultations being introduced, and situations such as sick leave and the dispensing of medication to health centres being handled. These services were well received by patients. ABDEM provided psychological and rehabilitation consultations by telephone and telematically, as well as disseminating information about the virus, which patients appreciated.
The collaboration between ABDEM and various departments of the Balearic Islands Health Service was key to carrying out this work, and it is also one of the pillars of continuity of care for these patients within the healthcare system. The scenario presented by the COVID-19 pandemic should prompt healthcare and social care professionals to reflect on how to improve in the areas identified, with health policies that protect the cogs in the wheel of public health, and from which we must learn for future situations.
FundingNo funding was received for this study.
The authors have no conflict of interests to declare.
We would like to thank the Balearic Multiple Sclerosis Association (ABDEM) for their involvement, and for encouraging their service users and professionals to participate in the study. We would also like to thank the Primary Care Management of Mallorca for the technical and human support provided for this study, and for all the projects carried out with this team over the years. Finally, we would like to thank our advanced practice nursing colleagues in neurology at Hospital Clínic for their vision in developing this essential nursing role for neurological patients.
