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Objectives: Transitioning to secondary progressive multiple sclerosis (SPMS) is demanding for both patients and healthcare professionals. The particular challenges and the ways patients cope are poorly understood. The present study examines what challenges people face when diagnosed with SPMS by exploring experiences of people who have transitioned recently (up to 5 years)., Design: Semistructured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis., Setting: UK., Participants: We interviewed 21 people at baseline and 17 participated in the follow-up interviews., Results: The majority of participants reported expecting to transition to SPMS, and the diagnosis did not make much difference to them. Participants described increasing emotional and physical challenges after transitioning to SPMS and between the first and second interviews. Planning, using distractions and maintaining social roles helped participants cope with the increased challenges. The same coping strategies were used between the two interviews. Participants felt there was not much left to do regarding the management of their symptoms. A key theme was the sense of abandonment from healthcare services after transitioning to SPMS., Conclusions: After transitioning to SPMS, people are faced with multiple challenges. Participants described a lack of directions for symptoms management and lack of support from the healthcare system. An integrated multidisciplinary healthcare approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Coping positively and negatively influences psychosocial and other outcomes in multiple sclerosis (MS), but there is conflicting evidence about the use of different coping strategies and their associations with demographic and disease characteristics. Our aims were to examine which coping strategies are used by a large sample of people with MS, then to identify any associations between demographic and disease related factors with use of individual coping strategies., Methods: Participants in the Trajectories of Outcomes in Neurological Conditions (TONiC) study completed the Coping Orientations to Problems Experienced (COPE60) questionnaire. Relationships between demographic and clinical characteristics and coping strategies were examined by multiple ordinal logistic regression to assess the effect of each potential predictor after adjustment for other possible covariates., Results: From 722 patients, the most commonly used strategy was Acceptance, followed by Active Coping, Planning and Positive Reinterpretation and Growth. All but two strategies showed significant associations with demographic and clinical characteristics. The most marked effects were found for Restraint, with people in employment 2.1 times as likely to utilise this strategy compared to those unemployed, and Seeking of Emotional Social Support and Focus on and Venting of Emotions, which were utilised twice as much by women compared to men. Behavioural and Mental Disengagement were highly associated with greater disability and not being in employment., Conclusion: Clinicians should be aware of several disease and demographic characteristics that are associated with use of potentially maladaptive coping strategies., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Introduction: Executive function deficits are prevalent in people with multiple sclerosis (PwMS), and PwMS use less adaptive coping than healthy controls. This cross-sectional study assessed whether there is a relationship between executive function and coping in PwMS., Method: One hundred and seven participants with relapsing remitting or secondary progressive MS (n = 83 and 24, respectively; age M = 48.8 ± 11.1 years) completed measures of coping and executive function., Results: A positive relationship was found between verbal fluency and use of active, emotional, and instrumental social support coping, and total executive function and substance abuse coping. There was a negative relationship between coping strategies and core (social support, acceptance, religion, restraint, and total coping), higher order (denial and humor), and total executive function indices (acceptance, religion, behavioral disengagement, denial, and total coping)., Conclusion: These directional differences provide support for the importance of specific executive functions in coping strategy utilization. Understanding these relationships will assist psychologists and neuropsychologists with patient psychoeducation, adaptive coping strategy intervention and management for PwMS with reduced executive function ability.

Purpose: The majority of people with multiple sclerosis (pwMS) initially present with discreet periods of relapses followed by partial remission of symptoms (RRMS). Over time, most pwMS transition to secondary progressive MS (SPMS), characterized by a gradual accumulation of disability. This study aimed to explore the experiences, coping and needs associated with transitioning from RRMS to SPMS., Method: Data were collected via semi-structured interviews with nine pwMS and seven specialist MS health professionals (HPs). Thematic analysis was used to analyze the data., Results: Four major themes were identified: "Is this really happening?"; "Becoming a reality"; "A life of struggle"; and "Brushing oneself off and moving on." Findings suggested a process of moving from uncertainty towards confirmation of one's diagnostic label. Being reclassified with SPMS served as a turning point for many, and was accompanied by a range of cognitive, emotional and behavioral responses. The value of adequate information and support surrounding the transition, and the potential benefit of education and support for health professionals in relation to the transition were indicated., Conclusions: Understanding pwMS' experiences of the transition is essential if clinicians are to provide pwMS with appropriate support during the transition. Implications for Rehabilitation The timing and delivery of preparatory education for patients about the transition to SPMS should be carefully considered. Sufficient information and follow-up support following the reclassification of SPMS is crucial but sometimes lacking. The importance of sensitive communication of the reclassification of SPMS was highlighted. MS Specialist health professionals may potentially benefit from training and support around communication of the reclassification of SPMS. Given the potential negative psychological impact of the transition, the psychological wellbeing of the patients during the transition to SPMS should be monitored and responded to appropriately.

Background: The aim was to investigate predictive values of coping styles, clinical and demographic factors on time to unemployment in patients diagnosed with multiple sclerosis (MS) during 1998-2002 in Norway., Method: All patients ( N = 108) diagnosed with MS 1998-2002 in Hordaland and Rogaland counties, Western Norway, were invited to participate in the long-term follow-up study in 2002. Baseline recordings included disability scoring (Expanded Disability Status Scale (EDSS)), fatigue (Fatigue Severity Scale (FSS)), depression (Beck Depression Inventory (BDI)), and questionnaire assessing coping (the Dispositional Coping Styles Scale (COPE)). Logistic regression analysis was used to identify factors associated with unemployed at baseline, and Cox regression analysis to identify factors at baseline associated with time to unemployment during follow-up., Results: In all, 41 (44%) were employed at baseline. After 13 years follow-up in 2015, mean disease duration of 22 years, 16 (17%) were still employed. Median time from baseline to unemployment was 6 years (±5). Older age at diagnosis, female gender, and depression were associated with patients being unemployed at baseline. Female gender, long disease duration, and denial as avoidant coping strategy at baseline predicted shorter time to unemployment., Conclusion: Avoidant coping style, female gender, and longer disease duration were associated with shorter time to unemployment. These factors should be considered when advising patients on MS and future employment.

This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified gender differences in diagnosis-seeking which impacted subsequent sense-making. Male respondents found a diagnosis of multiple sclerosis difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of multiple sclerosis was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of multiple sclerosis require that self-management strategies are both contextual and timely, although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with multiple sclerosis are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of 'normality' and existent social roles for as long as possible, but this ethos can negate both one's ability to self-manage and the management of self.

Objective: We examined cognitive and behavioural challenges and adaptations for people with progressive multiple sclerosis (MS) and developed a preliminary conceptual model of changes in adjustment over time., Design: Using theoretical sampling, 34 semi-structured interviews were conducted with people with MS. Participants were between 41 and 77 years of age. Thirteen were diagnosed with primary progressive MS and 21 with secondary progressive MS. Data were analysed using a grounded theory approach., Results: Participants described initially bracketing the illness off and carrying on their usual activities but this became problematic as the condition progressed and they employed different adjustment modes to cope with increased disabilities. Some scaled back their activities to live a more comfortable life, others identified new activities or adapted old ones, whereas at times, people disengaged from the adjustment process altogether and resigned to their condition. Relationships with partners, emotional reactions, environment and perception of the environment influenced adjustment, while people were often flexible and shifted among modes., Conclusions: Adjusting to a progressive condition is a fluid process. Future interventions can be tailored to address modifiable factors at different stages of the condition and may involve addressing emotional reactions concealing/revealing the condition and perceptions of the environment.

Fatigue, as one of the most frequent symptoms in patients with multiple sclerosis (MS), has various adverse effects on the physical and mental health-related quality of life (PCS, MCS) of patients. The aim of this study was to explore whether coping mediates the relationship between fatigue and PCS and MCS. We collected data from 154 consecutive MS patients (76.0% women; mean age 40.0 ± 9.9). Patients completed the Short-Form Health Survey (SF-36), the multidimensional fatigue inventory (MFI-20) and the coping self-efficacy scale. The mediating effect of coping was analysed using linear regressions and the Sobel z-test. In PCS significant mediation was found in some of the fatigue dimensions (general, physical and reduced Motivation), while in MCS, it was significant in all dimensions. These results can be implemented into educational programmes for patients, their caregivers or physicians, and can also be helpful in the treatment process.

High levels of depressive and anxiety symptoms have been reported by individuals with multiple sclerosis (MS). This study examined the associations between resilience, self-efficacy and coping and depressive and anxiety symptoms and whether resilience, self-efficacy and coping were predictors of depressive and anxiety symptoms in patients newly diagnosed with MS. A sample of 129 individuals newly diagnosed with MS participated in this cross-sectional study and completed an online questionnaire assessing resilience, self-efficacy, coping and depressive and anxiety symptoms. Results revealed that depressive and anxiety symptoms were significantly associated with problem-focused, emotion-focused and avoidance coping strategies, resilience and self-efficacy. Anxiety symptoms were also significantly associated with employment status and level of disability. Results from hierarchical multiple regression revealed that the resilience subscale of personal competence, the avoidance coping style of substance use and emotion-focused coping styles of venting predicted depressive symptoms and uniquely accounted for 63.8% of the variance in the depression score, F (18, 124) = 10.36, p = .000. Level of disability and employment status accounted for 13.2% of the anxiety score and avoidance coping style of denial and emotion-focused coping style of humour accounted for 36.4% of the variance in the anxiety symptom score, F (15, 112) = 6.37, p = .000. Our findings suggest that resilience and avoidance and emotion-focused coping strategies are predictive of depressive symptoms and anxiety symptoms in those newly diagnosed with MS. Resilience and coping styles may be another target for interventions aimed at managing depressive and anxiety symptoms in those newly diagnosed with MS.

The aim of this study was to replicate, in patients with multiple sclerosis (MS), the three-cluster cognitive-behavioral classification proposed by Turk and Rudy. Sixty-two patients attending a tertiary MS rehabilitation center completed the Pain Impact Rating questionnaire measuring activity interference, pain intensity, social support, and emotional distress. The General Health Questionnaire-28 and the Multiple Sclerosis Impact Scale-29 assessed disability and restriction in participation. Cluster analysis classified patients into three cognitive-behavioral groups (40.4%, 'adaptive copers'; 36.5%, 'dysfunctional'; and 23.1%, 'interpersonally distressed'). Patients in groups with higher levels of activity interference, emotional distress due to pain, and lower perceived levels of social support had significantly higher levels of depression on the General Health Questionnaire-28 (P<0.003), and reported a greater impact on their physical and psychological functioning (P<0.001) on Multiple Sclerosis Impact Scale-29 subscales. Possible cut-points were identified to aid clinicians in classifying patients into clusters for individualized treatment. More research is needed to improve the understanding of pain and the potential use of cognitive-behavioral clusters in patients with MS. These may be useful in the development of tailored early intervention, which may reduce pain-related disability and contribute to patient's overall well being.

In this qualitative study, we explored the question of why some women with progressive forms of multiple sclerosis (MS) cope successfully in spite of disease progression. Ten women with progressive courses of MS, the more physically challenging forms of the disease, who self-reported as coping successfully with the disease, participated in the study. The study features an interview protocol using a psychotherapeutic model of change, precursors of change model, and incorporates a then-post design. The women's rich descriptions and explanations of precursors indicate the differences between the precursors used most frequently at time of diagnosis with MS and at the time of interview. The article provides a glimpse into the experiences these women have had with the continued change and unpredictability that the disease often engenders.

Introduction: and objective The aim of this study was to compare coping strategies and quality of life (QoL) in multiple sclerosis (MS), as they relate to the course of the disease (relapsing-remitting (RR), secondary progressive (SP), primary progressive (PP)), while taking depression and anxiety into account., Methods: A total of 135 MS subjects were seen for a semi-structured interview in order to collect socio-demographic and clinical information, after which there was an assessment of their mental and cognitive states (Mini International Neuropsychiatric Interview (MINI), Montgomery and Asberg Depression Rating Scale (MADRS), Depressive Mood Scale (EHD), Hamilton Anxiety (HAMA), Frontal Assessment Battery (FAB)). All subjects then completed three self-report questionnaires; two about coping strategies (Ways of Coping Checklist (WCC), Coping with Health, Injuries and Problems Scale (CHIP)) and one about QoL (SEP59)., Results: The mental health (depression and anxiety) and the psychological and social dimensions of QoL were relatively unaffected. However, after controlling for age and disability, the disease course had a strong effect on both mental health and QoL, with the poorest condition for SPMS and the best condition for PPMS. The SPMS patients tend to use emotional coping strategies extensively, while the PPMS patients use more instrumental strategies., Discussion: Our study clearly demonstrated that psychological and social well-being were substantially affected by the disease course. These results encourage us to develop interventions focused on coping strategies and which are better adapted to individual patients.

Within the multiple sclerosis (MS) population, high prevalence of psychiatric concerns, such as depression and anxiety, has been well documented. The purpose of this study was to examine factors contributing to higher depression and anxiety levels in a sample of 82 patients utilizing MS clinic services. Independent variables included MS physical severity, self-reported cognitive impairment, and perceived illness management, respectively. Results from hierarchical regression analyses indicated that depression was related to the physical severity, self-reported cognitive impairment, and perceived illness management variables. Anxiety was also related to the physical severity and self-reported cognitive impairment variables but not to the perceived illness management ones, suggesting that depression and anxiety symptoms may involve somewhat different processes within MS. The findings of this study support further clinical consideration and additional investigation of these variables in the treatment of anxiety and depression in an MS clinic population.

The purpose of this longitudinal study was to examine the relationships among illness uncertainty, coping effectiveness, hopefulness, and mood in persons with chronic, progressive multiple sclerosis (MS) during participation in a double-blind clinical drug trial. The similarities and differences in the pattern of relationships among variables were investigated within each of four data collection time frames and across time. The convenience sample comprised 52 participants with clinically definite MS who participated in a 2-year trial using methotrexate to treat progressive MS. Participants with more severe disability were found to be less hopeful and more emotionally distressed. Participants with higher levels of hopefulness used more effective coping strategies and had more positive moods, and those with greater uncertainty about their MS were likely to experience less hopefulness and more negative moods. The pattern of relationships among uncertainty, coping, hopefulness, and mood did not change throughout participation in the drug trial. The findings may be used as a foundation for planning nursing interventions with patients involved in drug studies.

There are only a few studies in the German speaking countries available which address the subject of the experience of chronically ill people during the course of their illness. Therefore it was the intent of this present study to find answers for central nurse science issues: How do people who suffer from a chronically progressive course of multiple sclerosis experience the downward trajectory? Which strategies do they develop in order to integrate the disease into their lives? In what ways does the scientific paradigm of medicine influence the perceptions of the illness and the life with it? After an analysis of the national and international state of nursing research follows a description of the methodology of the Grounded Theory and the individual examination steps of the study. The second part examines some essentials of the study. The results show that the trajectory is characterized by four phases. At first the ill person concentrates on the social discussion of the pathogenesis and the medical paradigma. But with physical experiences, exchange with other affected people and acquired information, those concerned develop a very case-specific knowledge. Often disillusioned by the medication strategies, based on the experience that their subjectivity and their individuality are not taken into account, they increasingly disapprove the deficit-oriented perspective of the professionals. They develop distinctly self-caring potentialities. To identify and support this self-care potentialities should be the very core of nursing.

The aim of the study was to explore personality traits as predictors of coping with disease-related distress in patients with multiple sclerosis (MS). All patients with clinically definite MS in a city with a population of approximately 100000 were asked to complete the NEO Personality Inventory and a multidimensional coping inventory (COPE). There was an 83% response rate yielding 49 patients for the study population and 49 controls, matched for age, gender and educational level to the MS-patients, were used as comparison. Only Neuroticism correlated significantly with emotion-focused coping in both groups. Extraversion and Openness to Experience were linked to task-oriented coping strategies in normal controls but not in the MS-group. Agreeableness was associated with avoidance-oriented coping strategies only in the MS-group. Thus, the relation of certain personality characteristics to the choice of strategies for coping with the disease-related distress appear to differ from coping with stressful problems in everyday life. As dispositional characteristics may interfere with adaptive coping responses, analysis of personality traits and coping strategies could contribute while attempting to relieve the consequences of chronic disease on everyday life.

This study investigated the effectiveness of a short course of mindfulness of movement to help with symptom management in eight people with multiple sclerosis. Progress was compared to a control group who were asked to continue with their current care. Each participant received six individual one-to-one sessions of instruction. They were also provided with audio and videotape aides. Each participant was assessed on a test of balance, pre- and post-intervention, and at 3-month follow-up. All participants completed a rating of change of 22 symptoms relevant to multiple sclerosis. A close relative or friend was also asked to assess independently the degree of change. The mindfulness group reported improvement over a broad range of symptoms. This was verified by the relatives' independent rating and maintained at 3 month follow-up. The control group showed no improvement but instead tended towards a deterioration on many of the items. The physical assessment of balance also showed a significant improvement for the mindfulness group. This improvement was maintained at 3 month follow-up. In conclusion, training in mindfulness of movement appeared to result in improved symptom management for this group of people with multiple sclerosis. This was a pilot study, using small numbers, so the results need to be treated with caution. Several improvements to the experimental design are suggested. The role of individual therapeutic ingredients is discussed.