Objectives Multiple sclerosis (MS) is a chronic disease that mainly affects young people. Patients with MS experience several emotional responses to changed perceptions of themselves and manage this situation in ways focused on controlling the overall burden of disease. This present study aimed to evaluate differences between patients with MS and healthy controls (HCs) in coping styles, identifying the MS clinical features that influence adaptive responses.
Methods Patients with MS, according to the McDonald 2010 criteria, and HCs were recruited. Coping strategies were assessed using the Coping Orientation to the Problems Experienced (COPE-NVI; Italian version) questionnaire.
Results A cohort of 135 patients with MS (female: 89/135, 65.9%) and 94 HCs (female: 64/94, 68%) were enrolled. Impaired social support and problem solving was noted for MS group (p=0.005). In the MS group, the social support worsened with increasing disease duration (p=0.002) independently of the level of disability. Associations between a higher Expanded Disability Status Scale score and avoidance strategies (p<0.01), as well between avoidance strategies and a previous depression diagnosis (p<0.001) were reported.
Conclusion Our findings highlight the negative impact of MS on various aspects of patients’ life. Therefore, psychosocial interventions are needed to increase adaptive coping mechanisms aimed to manage the burden of MS.
- multiple sclerosis
- disease burden
- coping strategies
- psychosocial intervention
- supportive care
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Multiple sclerosis (MS) is a chronic, neurological disease that mainly afflicts young people and is detrimental to various aspects of life. Its unpredictable course and variable symptoms, which are both visible and invisible, as well as cognitive impairment, mood disorders, pain and fatigue can impair several spheres of function, which leads to a negative impact on daily activities, work, family interactions and social life.1
Coping strategies refer to the specific efforts, both behavioural and psychological, that individuals employ to control stressful events. Commonly, distinctions are made between active and passive coping strategies. Active coping strategies—aimed to change the nature of the stressor itself—include planned problem solving, creating positive meaning by focusing on personal growth and seeking social support. Passive coping strategies include distancing, self-control, accepting responsibility and escape/avoidance.2 Coping strategies can also be distinguished as problem-focused coping, directed towards reducing stressful circumstances, and emotion-focused coping, which is oriented towards managing emotions.2
Many studies have examined the emotional responses used by patients with MS to cope with their disease. Several studies have also evaluated the predominance of a certain type of coping strategy in association with the level of disability, disease duration, cognitive impairment, concomitant depression and other factors, in both Italian and other MS populations, and showed the impact that a ‘maladaptive’ coping strategy can have on the quality of life of patients with MS.3–5
This present study aimed to evaluate differences between people with MS and healthy controls (HCs) based on their coping styles using the Italian version of the Coping Orientation to the Problems Experienced (COPE-NVI).2 Additionally, we explored the MS clinical features that can influence coping strategies in the MS group.
Patients with MS, diagnosed according to the McDonald 2010 criteria,6 and HCs were recruited from the Multiple Sclerosis Centre of the University of Cagliari.
For each subject, the age, sex and level of education were collected. Clinical data for all patients (disease course, age at onset of MS, disease duration, level of disability expressed by Expanded Disability Status Scale (EDSS) score,7 disease modifying therapy and depression diagnosis) were also collected.
Signed informed consent was obtained from each participant and the local ethics committee approved the study protocol.
Coping strategies were assessed using the COPE-NVI,2 which is a useful and psychometrically validated tool for measuring coping styles in Italian adults.2 COPE-NVI consists of the following five large and mostly independent sections: social support, avoidance strategies, positive attitude, problem solving and turning to religion.
COPE-NVI scores for each of the five dimensions were calculated for the MS and HC groups, and intergroup comparisons were carried out using the Mann-Whitney U test.
A multiple regression analysis was performed to assess potential factors that influenced coping strategies in both the MS and HCs groups. In all assays, a threshold for statistical significance was set at p<0.05.
Overall, the patient cohort included 135 patients with MS (female: 89/135; 65.9%) and 94 HCs (female: 64/94; 68%). The mean patient age (in years±SD) was 37.9±8.2 and 41±10.5 in the MS and HCs groups, respectively. Demographic features of all subjects, clinical data of MS patients and the COPE-NVI scores for each of the five dimensions for both groups are presented in table 1. Impaired social support and problem solving was noted for the MS group (p=0.005). In the MS group, women were found to be more socially oriented than men (p=0.02) and the social support worsened with increasing disease duration (p=0.002) independently of the level of disability. Associations between a higher EDSS score and avoidance strategies (p<0.01), as well between avoidance strategies and a previous depression diagnosis (p<0.001) were reported. Turn to religion scores were more positively associated with the female sex (p<0.01), an older age at MS onset (p<0.001) and a longer duration of disease (p=0.02) (see online supplementary table).
An intergroup comparison of COPE-NVI scores was carried out using the Mann-Whitney U test for (i) patients treated with disease modifying drugs versus untreated patients and (ii) patients treated with first-line versus second-line therapy. Associations between avoidance strategies and no treatment (p=0.03) and between avoidance strategies and a second-line therapy (p<0.001) were reported.
Our present study demonstrates that patients with MS are less inclined to use coping strategies that involve seeking social support and problem solving compared with HCs. Our findings are consistent with those of previous studies that demonstrated more emotion-focused coping strategies among individuals with MS.8 The unpredictable nature of MS can lead to various hardships for patients, including the possibility of increasing disabilities over time, a changed perception of self, a social role that may worsen along with the overall burden of MS and the development of a feeling of social isolation and disorientation along with problem-focused coping impairment. In our patient cohort, a greater impairment of social support was reported in patients with a long duration of disease, highlighting that MS can worsen the social life of an affected individual. Previously, we documented a negative effect of MS on the relationships of patients, notably of relationships with work colleagues.9
Additionally, high rates of depression have been documented in patients with MS,10 which could enhance maladaptive coping. In our present study, 29/135 (21.4%) patients with MS had experienced a major depression episode in their lifetime that was diagnosed by a neurologist or psychiatrist. In the MS group, associations between depression and disability with avoidance strategies were reported (p<0.01), highlighting that mental as well as physical impairment can negatively influence the acceptance of individuals with MS. In addiction, an association between avoidance strategies and no treatment (p=0.04) was reported, indicating a lack of acceptance of the disease in a group of patients. Avoidance strategies were also reported in patients treated with second-line therapy (p<0.001), suggesting a lack of acceptance of the severity of MS as well as a discomfort derived from a previous ineffective treatment.
MS is a complex neurological disease that may include several symptoms, visible and invisible. In particular, invisible symptoms such as fatigue, dysphagia, pain, sphincteric dysfunction, cognitive impairment and mood disorders are difficult to recognise and quantify,10 11 but can crush the patient under the important burden of the disease as much as visible symptoms. It is certainly of crucial importance for patients with MS to choose an early treatment that can act on the long-term risk of disability,12 but equally important it is to support psychologically the patient since the early stages of the disease. Therefore, the need for a multidisciplinary approach to the treatment of MS is evident,9 and it should incorporate an extensive array of services for individuals living with and affected by MS, including family members, caregivers and other members of patient support systems. These programs should be designed to facilitate the acceptance of the disease and maximise the ability of patients with MS to maintain their independence and social roles. Therefore, society plays a central role in the acceptance of patients with MS and focused psychosocial interventions should be mandatory to provide patients with the best care and quality of life.
Contributors LL, GF, MGM and EC drafted/revised the manuscript, participated in study concept or design, analysis or interpretation of data and carried out study supervision. JF and GC participated in design and acquisition of data.
Competing interests None declared.
Patient consent Obtained.
Ethics approval Informed consent was obtained from all participants included in the study and the local ethics committee approved the study (University of Cagliari).
Provenance and peer review Not commissioned; internally peer reviewed.
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