Insights for Healthcare Providers on Shared Decision-Making in Multiple Sclerosis: A Narrative Review.

Shared decision-making (SDM) between the patient and their healthcare provider (HCP) in developing treatment plans is increasingly recognized as central to improving treatment adherence and, ultimately, patient outcomes. In multiple sclerosis (MS), SDM is particularly crucial for optimizing treatment in a landscape that has grown more complex with the availability of newer, high-efficacy MS therapies. However, little direct evidence on the effectiveness of SDM is available to guide practice. Multiple factors, including patient age, ethnic background, perceptions, invisible MS symptoms, and psychological comorbidities can influence a patient's willingness and ability to participate in SDM. HCPs need to appreciate these factors and ask the right questions to break down obstacles to SDM. The HCP has a responsibility to help patients feel adequately informed and comfortable in having an active role in their care. This review identifies potential barriers to SDM and provides a strategy for HCPs to overcome these obstacles through patient (and caregiver) discussions to ensure optimal patient satisfaction with treatment and thus the best possible outcomes for their patients.

The Roles Between Gratitude, Perceived Stress, and Quality of Life Among Patients with Multiple Sclerosis.

Dispositional gratitude has been negatively associated with perceived stress (PS) and positively associated with higher well-being in both general and chronically ill people. Attempts to understand the relationship between gratitude and aspects of quality of life (QOL) have been documented; however, there is limited research on determining the potential mediating effect of PS on gratitude and QOL factors in individuals with Multiple Sclerosis (MS). In this cross-sectional study, participant demographics, dispositional gratitude, PS, and QOL factors were collected online via self-report measures from a sample of 68 participants diagnosed with MS. Results indicated that both dispositional gratitude and PS were associated with aspects of QOL and that PS was found to partially and indirectly account for the relationship between gratitude and improved QOL. Findings are consistent with existing research conducted with non-chronically ill samples. Clarifying relationships between PS and dispositional factors in MS is necessary to inform future interventions aimed at maintaining and enhancing an individual's QOL.

Podcast on the Challenges and Recommendations to Address Unmet Needs in MS for LGBTQ+ Populations in the United States.

In general, individuals who are lesbian, gay, bisexual, transgender, queer or questioning, plus other identities (LGBTQ+) living with multiple sclerosis (MS) have less favorable healthcare experiences and poorer overall health than cisgendered heterosexual individuals. They may experience further challenges in addition to managing their MS, including psychological or emotional problems, and an increased risk of comorbid diseases and substance abuse. Transgender individuals specifically face additional unique challenges, including high rates of mental health distress and effects from long-term exogenous hormone use and gender affirmation surgery. These findings highlight disparities in both quality of care and health outcomes of LGBTQ+ individuals. Unmet needs and drivers of these disparities relate to a lack of inclusivity in healthcare environments, poor communication between healthcare professionals (HCPs) and LGBTQ+ patients, inadequate HCP knowledge of LGBTQ+ health issues, and gaps in research into the impact of sexual orientation and gender identity in MS. Although data are limited, recommendations to improve the experience and care of LGBTQ+ individuals with MS include increasing HCP awareness of the challenges LGBTQ+ individuals face and provision of inclusive care, with the overarching goal for HCPs to be allies to the LGBTQ+ community. Improvements may be achieved through diversity and cultural awareness training of HCPs on sexual orientation and gender identity, and ensuring a friendly, open, and supportive healthcare environment. Use of sensitive and gender-neutral language by HCPs, representation of LGBTQ+ individuals in patient materials, and access to LGBTQ+ MS support groups are also recommended. HCPs should aim to integrate discussion of sexual orientation and gender identity and sexual and mental health into routine assessments and collaborate with other HCPs as needed. By addressing the challenges and unmet needs of LGBTQ+ individuals with MS, this should help resolve disparities in their quality of care and improve their overall health.

The impact of stigma on perceived quality of life and experience of anxiety and depression in individuals diagnosed with MS.

BACKGROUND: Stigma experienced by persons living with multiple sclerosis (PwMS) is underrepresented in the literature. Discovering how the experience of stigma impacts quality of life and mood symptoms in PwMS may guide future care considerations with the goal of improving overall quality of life. METHODS: A retrospective review of data from the Quality of Life in Neurological Disorders (Neuro-QoL) set of measures and PROMIS Global Health (PROMIS-GH) scale was conducted. Multivariable linear regression was used to assess relationships between baseline (first visit) Neuro-QoL Stigma, Anxiety, Depression, and PROMIS-GH. Mediation analyses examined whether mood symptoms mediated the relationship between stigma and quality of life (PROMIS-GH). RESULTS: 6,760 patients (mean age 60.2 ± 8.9 years, 27.7% male, 74.2% white) were included. Neuro-QoL Stigma was significantly related to PROMIS-GH Physical Health (beta=-0.390, 95% CI [-0.411, -0.368]; p < 0.001) and PROMIS-GH Mental Health (beta=-0.595, 95% CI [-0.624, -0.566]; p < 0.001). Neuro-QoL Stigma was also significantly related to Neuro-QoL Anxiety (beta=0.721, 95% CI [0.696, 0.746]; p < 0.001) and Neuro-QoL Depression (beta=0.673, 95% CI [0.654, 0.693]; p < 0.001). Mediation analyses revealed that both Neuro-QoL Anxiety and Depression partially mediated the relationship between Neuro-QoL Stigma and PROMIS-GH Physical and Mental Health. CONCLUSION: Results demonstrate stigma is associated with decreased quality of life in both physical and mental health domains in PwMS. Stigma was also associated with more significant symptoms of anxiety and depression. Finally, anxiety and depression play a mediating role in the relationship between stigma and both physical and mental health in PwMS. Therefore, tailoring interventions to effectively reduce symptoms of anxiety and depression in PwMS may be warranted, as it will likely improve overall quality of life and reduce negative impacts of stigma.

Leadership Inequity, Burnout, and Lower Engagement of Women in Medicine.

Gender parity has been reached in graduation rates from medical school, yet women in medicine continue to face obstacles in promotion, compensation and opportunities, leading to leadership inequity, higher burnout and lower engagement. These complex issues with gender are just one aspect of the wide challenges related to diversity, equity and inclusion among medical professionals. While there are no "one size fits all" approaches, psychologists are well positioned to lead efforts related to promoting leadership equity, reducing burnout and raising engagement because of their training in communication skills, programmatic development and empathetic listening. This paper details several evidence-based efforts in which psychologists can lead in these ongoing issues for women in medicine.

Exploring the impact of the COVID-19 pandemic on social isolation and mental health in people with MS.

BACKGROUND: People with multiple sclerosis (MS) may be disproportionally impacted by the coronavirus disease of 2019 (COVID-19) as various factors important to their functioning and quality of life are at-risk and/or compromised during the pandemic. In particular, the social distancing and quarantine practice during the pandemic maybe detrimental to MS patients' social and emotional health. Compared with the general population, MS patients may be under increased social strain and suffer worse health consequences from social isolation. To date, there has been no research examining the social consequences of the pandemic on MS patients' emotional and social health. METHODS: This is a retrospective longitudinal study of 266 adults with MS who were followed at a large academic medical center in the Midwest. Each participant completed monthly surveys including depression, anxiety, and social health variables. RESULTS: T-Tests shows worse anxiety (95% CI [-5.03, -3.05]; p-value < 0.001), worse depression (95% CI [-2.67, -1.03]; p-value < 0.001), and worse satisfaction with social roles (95% CI [2.37, 3.95]; p-value < 0.001) since the COVID-19 outbreak (March 2020). Social isolation is associated with worse anxiety (95% CI [-8.98, -4.58]; p-value < 0.001) and depression (95% CI [-6.88, -3.24]; p-value < 0.001). However, individuals who had in-person visits before and after the outbreak did not experience any changes in anxiety, depression, or social health. CONCLUSION: MS patients' anxiety, depression, and social participation worsened during the COVID-19 pandemic. Social isolation is found to be associated with worse anxiety and depression. However, those who attended in-person visits for their MS treatment did not experience negative changes in their emotional or social health. This study highlights the importance of healthcare provider's alertness to MS patients' social health and the interplay between social and emotional health during the COVID-19 pandemic.

Change in Physician Burnout between 2013 and 2020 in a Major Health System.

OBJECTIVE: Assessing changes in physician burnout over time can offer insight into the causes of burnout. Existing studies are limited by using different samples of physicians at each time point. Our objective was to assess changes in burnout between 2013-2014 and 2019-2020 overall and within a cohort of physicians who took the survey twice. METHODS: This is a longitudinal cohort and cross-sectional study of physicians in a major health system. They were administered the Maslach Burnout Inventory in 2013-2014 and 2019-2020. We separately assessed differences in odds of burnout and its subscales in 2013-2014 and 2019-2020 by physician characteristics and clinical time. We then assessed differences in the odds of reporting burnout and its subscales in 2019-2020 compared with 2013-2014 overall and by physician sex, race, and change in clinical full-time employment. RESULTS: There were 1220 respondents in 2013-2014, 503 in 2019-2020, and 149 who responded at both time points. Burnout increased from 35% to 56%. Compared with 2013-2014, physicians had 2.39 higher odds (95% confidence interval [CI] 1.92-2.98) of burnout in 2019-2020, and this change in burnout was significantly more pronounced for female versus male physicians (odds ratio 1.80; 95% CI 1.57-1.80). Compared with White physicians, non-White physicians had significantly lower odds of burnout at both time points, but their odds increased significantly more over time (odds ratio 1.36; 95% CI 1.05-1.57). CONCLUSIONS: We found a substantial increase in burnout over time, which was particularly pronounced for non-White and female physicians. Assessment over time is essential for understanding problematic trajectories of burnout that may be obscured by cross-sectional studies.

Effects of Conformity to Masculine Norms and Coping on Health Behaviors in Men With Multiple Sclerosis.

BACKGROUND: The role of conformity to masculine gender norms in health behaviors in men with multiple sclerosis (MS) has not received attention. This cross-sectional study explores these issues and their relationship to coping and health behaviors. METHODS: Eighty-one men with MS completed the Conformity to Masculine Norms Inventory-46 and the Ways of Coping Questionnaire and provided demographic and clinical variables. These results were used to predict subscale scores of the Health Behavior Inventory-20 in multivariable regression models. RESULTS: Models for the Preventive Self-care and Avoiding Anger and Stress subscales were successfully fit. For the former, respondents endorsing lower levels of masculine conformity related to Emotional Control and higher levels of Heterosexual Self-presentation predicted greater self-care, as did higher use of Positive Reappraisal as a coping strategy. For men reporting low levels of Positive Reappraisal as a coping strategy, increasing Heterosexual Self-presentation was associated with higher levels of self-care. For those with high levels of coping with Positive Reappraisals, increased Heterosexual Self-presentation was associated with modest declines in self-care. For the Avoiding Anger and Stress subscale score, men endorsing Violence or Heterosexual Self-presentation as important aspects of masculinity also reported less efforts in controlling stress and anger. CONCLUSIONS: Masculinity adherence to traditional gender norms was a significant predictor of how men engaged in health behaviors and, in the case of Preventive Self-care, was found to interact with Positive Reappraisal as a coping strategy. Such information is novel and important to providers serving male patients with MS and can improve provider awareness/conceptualization of male patient needs.

Assessment of Computer Assisted Rehabilitation Environment (CAREN) System Use and Mood in Patients With Multiple Sclerosis.

Background: Depression is a common comorbidity in patients with multiple sclerosis (MS) and is associated with decreased quality of life. Identifying treatments that aid psychological and physical rehabilitation in patients with MS provides valuable information for interdisciplinary teams. Methods: Seventy-five adults with MS who completed the Patient Health Questionnaire-9 (PHQ-9) and Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health scale during routine physical therapy appointments where the (CAREN) system was used were studied. Data were retrospective and collected via patient-reported outcomes. Group comparisons used 2-sample t tests or Mann-Whitney U tests for continuous variables and Fisher exact tests for categorical variables. To examine self-reported depression, mean ± SD baseline scores were computed and stratified by number of CAREN sessions. Results: Patients with 5 or more sessions seemed to have lower baseline PHQ-9 and PROMIS Mental Health scores; however, no significant differences were found at the univariate level. There were no statistically significant differences in follow-up scores for the outcome measures. Conclusions: Current research evaluating the rehabilitation of patients with MS using the CAREN system is scarce. This pilot study is important to inform prospective studies exploring use of the CAREN system for psychological rehabilitation. Patients with 5 or more CAREN sessions had lower baseline PHQ-9 scores, which may suggest that mood plays a role in the selection of patients for CAREN system use. This study shows that mood is not affected by the CAREN system. More specific research needs to be completed with a more robust sample.

Providing Person-Centered Care via Telemedicine in the Era of COVID-19 in Multiple Sclerosis.

The coronavirus disease 2019 (COVID-19) pandemic has catalyzed the rapid adoption of telemedicine which encompasses synchronous and asynchronous interactions between patients and providers. In order to facilitate this rapid deployment, there has been numerous regulatory changes to ensure caregivers can effectively communicate with patients during this time. We illustrate a model where people, processes, and technology work together to address the comprehensive needs of multiple sclerosis (MS) patients. We provide a template for how multidisciplinary, academic practices can implement a rapid shift to virtual management during the pandemic using existing infrastructure that can be widely adopted to care for patients with chronic diseases. Telemedicine was incorporated into our entire practice, which encompasses neurology, rehabilitation, advanced practice providers, fellows, social work, and behavioral medicine. Our patient satisfaction results remained stable across almost all domains when compared to survey results from our typical, in-office visits. Our experience demonstrates telemedicine's transformative potential in successfully managing a multidisciplinary MS clinic during the time of a pandemic and outlines a potential path for other practices to follow.

Therapeutic Approaches to Insomnia and Fatigue in Patients with Multiple Sclerosis.

The prevalence of sleep disorders in individuals with multiple sclerosis (MS) is 3-5 times higher compared to the general population. Insomnia Disorder, defined as difficulty falling asleep, maintaining sleep or waking up too early, can lead to significant fatigue, the most common and disabling symptom of MS. In addition, fatigue and insomnia in patients with MS also can overlap with and exacerbate other psychological and physical symptoms. Cognitive behavioral therapy for insomnia (CBT-I) has been shown as an effective treatment for chronic insomnia and burgeoning research has demonstrated the effectiveness of this treatment for insomnia in individuals with a variety of comorbid medical conditions including MS. The purpose of the current review will explore the literature surrounding the prevalence and impact of sleep disorders and fatigue in MS. Additionally, this review will address practical ways to help individuals with MS manage fatigue as well as how to modify typical standard behavioral treatments for insomnia to take into account special considerations for individuals with MS based on the level of disability and other comorbid issues that impact sleep.

The COVID-19 Crisis: A Mental Health Perspective and Response Using Telemedicine.

With the outbreak of COVID-19, patients and providers were forced to isolate and become innovative in ways to continue exceptional patient care. The Cleveland Clinic went from mostly in-person medical appointments to all virtual/telemedicine care in about 2 weeks' time. In this piece, we show specifically the thought process and our conversion of the Mellen Center for Multiple Sclerosis Behavioral Medicine to ensure that our patients still receive exceptional care and patient experience. Additionally, we discuss the importance of innovating the training and supervision of postdoctoral trainees using telepsychology and virtual options.

Prevalence and Correlates of Body Image Dissatisfaction in Patients with Multiple Sclerosis.

BACKGROUND: Body image dissatisfaction (BID) strongly predicts undesirable outcomes, including disordered eating, depression, and low self-esteem. People with multiple sclerosis (MS) may have higher BID due to changes in mobility and functioning and high rates of depression; however, little research has explored BID in people with MS. Identifying factors predicting BID in people with MS would help providers become more aware of BID and its possible negative outcomes. METHODS: The sample included 151 adult patients with MS receiving care at the Cleveland Clinic Mellen Center for MS. The Body Shape Questionnaire was administered, and demographic information was collected from medical records. Data on MS-specific variables were collected via computerized testing. A one-sample t test, an independent-samples t test, and a hierarchical linear regression were conducted. RESULTS: Average scores on BID were not significantly different from the population mean. Patients with moderate/marked concern were more likely to be female and had higher body mass index values, Patient Health Questionnaire-9 scores, and Quality of Life in Neurological Disorders Stigma T-scores. There were no age differences. No MS-specific variables significantly predicted BID. CONCLUSIONS: People with MS show approximately the same levels of BID as the general population. Higher BID was associated with being female and with higher body mass index, depression, and stigma. No MS-specific variables predicted higher BID after controlling for significant variables. Given the evidence in the literature of the negative effects of BID on health behaviors and mood, it is important to explore whether other factors affect BID in people with MS.

Short Report: Impact of Sleep Disorders on Depression and Patient-Perceived Health-Related Quality of Life in Multiple Sclerosis.

BACKGROUND: Sleep disorders in multiple sclerosis (MS) are associated with reduced health-related quality of life (HRQOL) and depression. However, research investigating and comparing how the two most common sleep disorders-insomnia and obstructive sleep apnea (OSA)-affect depression and HRQOL in MS is limited. The goal of this study is to examine the impact of diagnosed sleep disorders on patient-reported 1) HRQOL and 2) depressive symptoms in patients with MS. METHODS: We performed a retrospective medical record review of 531 adult patients with MS: 287 (54%) with a comorbid sleep disorder (insomnia or OSA) and 244 (46%) without a diagnosed sleep disorder. RESULTS: Neither 1) average ratings of depression or HRQOL nor 2) the proportion of moderate depression or moderately impaired HRQOL differed between individuals with MS and insomnia and those with MS and OSA. Neither sleep disorder predicted increased depression or poorer HRQOL. However, individuals with MS and a comorbid sleep disorder (insomnia or OSA) had poorer HRQOL compared with those without a diagnosed sleep disorder (MS only). CONCLUSIONS: Presence of a diagnosed sleep disorder may negatively affect HRQOL in MS. Providers should continue to screen for sleep disorders given their negative impact on patients with MS and the availability of effective treatments for insomnia and OSA.

Wellness and multiple sclerosis: The National MS Society establishes a Wellness Research Working Group and research priorities.

BACKGROUND: People with multiple sclerosis (MS) have identified "wellness" and associated behaviors as a high priority based on "social media listening" undertaken by the National MS Society (i.e. the Society). OBJECTIVE: The Society recently convened a group that consisted of researchers with experience in MS and wellness-related research, Society staff members, and an individual with MS for developing recommendations regarding a wellness research agenda. METHOD: The members of the group engaged in focal reviews and discussions involving the state of science within three approaches for promoting wellness in MS, namely diet, exercise, and emotional wellness. RESULTS: That process informed a group-mediated activity for developing and prioritizing research goals for wellness in MS. This served as a background for articulating the mission and objectives of the Society's Wellness Research Working Group. CONCLUSION: The primary mission of the Wellness Research Working Group is the provision of scientific evidence supporting the application of lifestyle, behavioral, and psychosocial approaches for promoting optimal health of mind, body, and spirit (i.e. wellness) in people with MS as well as managing the disease and its consequences.

Depressive Symptoms in Bariatric Surgery Patients with Multiple Sclerosis.

BACKGROUND: Bariatric surgery has been shown to be a safe and effective intervention for patients with comorbid obesity and multiple sclerosis (MS); however, this sub-population may be at heightened risk for pre- and postoperative depressive symptoms. OBJECTIVE: This current exploratory study aims to describe the prevalence and nature of depressive symptoms in a sample of patients with MS who undergo bariatric surgery. METHODS: Medical records were retrospectively reviewed to identify patients who received bariatric surgery and had a diagnosis of MS (n = 31) and a control sample of non-surgical MS patients with severe obesity (n = 828). Longitudinal outcome measures included the Patient Health Questionnaire-9 (PHQ-9) and Multiple Sclerosis Performance Scale (MSPS). RESULTS: There were no significant differences in PHQ-9 total and item scores between groups at baseline. PHQ-9 scores significantly improved at years 1 (p < 0.01) and 2 (p = 0.03) post-bariatric surgery when compared to non-surgical controls. Higher BMI (p = 0.03) and worse overall quality of life (p < 0.01) were associated with worsening of PHQ-9 scores in the bariatric group. When compared to controls, the bariatric group demonstrated improved MSPS scores on a trend level 1 year post-surgery (p = 0.08). CONCLUSIONS: Consistent with the literature on more general bariatric surgery populations, current findings highlight the possible early benefits of bariatric surgery for reducing depressive symptoms in this population when compared to controls. Importantly, results should be viewed as preliminary and additional research is needed to examine bariatric surgery and associations with depressive symptoms and performance in the MS population.