Palliative Care Knowledge and Attitudes Among Patients With Neuroinflammatory Diseases.

Background: Neuroinflammatory diseases are progressive leading to loss of function and disability. Although palliative care (PC) utilization has increased globally, it has scarcely increased in neurology. Objectives: To explore PC attitudes and knowledge among patients with neuroinflammatory diseases, such as multiple sclerosis, neuromyelitis optica spectrum disorder, and myelin oligodendrocyte glycoprotein antibody-associated disease. Methods: A cross-sectional 1-year study was conducted using the Palliative Care Knowledge Scale (PaCKS) and the PC Health Information National Trends Survey (HINTS). Murray's transition theory guided this study, which integrates palliative services including decision making, communication, and coordinated care. Results: The majority of study patients were female (69%) (N = 86) and White (79%). Forty-two percent indicated that they had never heard about PC, 46% said that they knew a little bit about PC, and 12% said that they knew a lot about PC. Fifty percent of patients knew the goals of PC and had knowledge about PC services. Forty-four percent to 60% agreed that PC goals include helping friends and family to cope with a patient's illness, offering social and emotional support, and managing pain and other symptoms. Patients who self-reported being familiar with PC performed significantly better on the PaCKS than those unfamiliar with PC (p < 0.001), and those who self-reported moderate or severe memory loss performed significantly worse on the PaCKS than those with mild memory loss (p = 0.027). There was an association between higher education and PC knowledge and between patients' PaCKS scores and their self-reported HINTS PC knowledge. Conclusions: Patients have partial PC knowledge. Patients require education about PC early in their disease along their illness trajectory.

Factors Associated With Disease-Modifying Therapy Adherence and Persistence in Multiple Sclerosis: A Scoping Literature Review.

BACKGROUND: Patients with multiple sclerosis (MS) receiving disease-modifying therapies (DMT) show published adherence rates of 27.0% to 93.8% and published persistence rates of 49.7% to 96.5%. Improvements in DMT adherence and persistence are key to optimizing MS care, and enhanced understanding could improve MS disease management and identify research gaps. This scoping literature review aims to examine the nature and findings of the literature evaluating factors associated with DMT adherence and persistence in patients with MS. METHODS: Eligible articles included in the literature review were quantitative clinical studies written in English, included adherence or persistence as primary outcomes, and accounted for covariates/confounders. The articles were assessed to identify factors associated with adherence/persistence and analyzed according to DMT type (self-injectable, oral, infusion). RESULTS: Fifty-eight studies (103,450 patients) were included. Study distribution by DMT type was self-injectable only (n = 41), oral only (n = 2), infusion only (n = 1), and more than 1 type (n = 14). Older age and previous DMT use were associated with increased adherence and/or persistence. Increased alcohol consumption, DMT adverse events, higher education, and higher body mass index were negatively associated with adherence and/or persistence. Greater number and severity of relapses was associated with increased adherence but decreased persistence. CONCLUSIONS: Most studies examined factors associated with adherence and persistence to self-injectable DMTs. These factors should be evaluated further for oral and infusion DMTs. Insights into the modifiable factors associated with adherence and persistence could guide treatment decisions and help improve adherence and clinical outcomes.

Shared decision-making in multiple sclerosis physical symptomatic care: a systematic review.

Background: Multiple sclerosis (MS) is a chronic autoimmune inflammatory, demyelinating, and neurodegenerative disease affecting young adults. People with MS are highly interested in engaging in physical symptom management and decision-making but are often not actively engaged in symptom management discussions. Research examining the benefit of shared decision-making in the management of physical MS symptoms is sparse. Objectives: This study aimed to identify and synthesize the evidence on the use of shared decision-making in physical MS symptom management. Design: This study is a systematic review of published evidence on the use of shared decision-making in physical MS symptom management. Data sources and methods: MEDLINE, CINAHL, EMBASE, and CENTRAL databases were searched in April 2021, June 2022, and April 2, 2023, for primary, peer-reviewed studies of shared decision-making in the management of MS physical symptoms. Citations were screened, data extracted, and study quality assessed according to Cochrane guidelines for systematic reviews, including risk of bias assessment. Statistical synthesis of the included study results was not appropriate; results were summarized in a nonstatistical manner using the vote-counting method to estimate beneficial versus harmful effects. Results: Of 679 citations, 15 studies met the inclusion criteria. Six studies addressed shared decision-making in the management of pain, spasms, neurogenic bladder, fatigue, gait disorder, and/or balance issues, and nine studies addressed physical symptoms in general. One study was a randomized controlled trial; most studies were observational studies. All study results and study author conclusions indicated that shared decision-making is important to the effective management of physical MS symptoms. No study results suggested that shared decision-making was harmful or delayed the management of physical MS symptoms. Conclusion: Reported results consistently indicate that shared decision-making is important in effective MS symptomatic care. Further rigorous randomized controlled trials are warranted to investigate the effectiveness of shared decision-making associated with MS physical symptomatic care. Registration: PROSPERO: CRD42023396270.

Shared decision-making among people with Multiple Sclerosis (MS) and their healthcare providers in the management of the physical symptoms of MS. Shared decision-making is suggested to be a key mechanism in promoting optimal symptomatic care related to Multiple Sclerosis (MS). Shared decision-making is mostly done and studied in relation to choosing therapies that may slow disease progression but not usually for symptomatic care. There are a few studies highlighting the effect of utilizing shared decision-making in symptomatic care of MS. We performed this study to identify all the published data about using shared decision-making in symptomatic care in MS to answer the research question: What is the evidence on shared decision-making in managing physical MS symptoms? We performed a systematic search for all the related published study results in four large literature databases. We found 15 studies on the use of shared decision-making in the management of MS-related symptoms. We synthesized the study results relating to the use of shared decision-making in symptomatic care of MS. The studies used several different designs and included a wide range of study rigor and quality. The results of our systematic review are: All the studies were consistent in their conclusions that shared decision-making is important for effective MS-related symptom management.Several studies found that symptomatic care is of the highest priority to people with MS, but not often a priority to their health care providers.The use of a shared decision-making model can promote discussion of symptoms in clinical consultations and align the goals of people with MS and their health care providers.Education of people with MS regarding their symptoms and available treatments will promote effective shared decision-making discussions. The available evidence supports that the use of shared decision-making is beneficial to the management of physical symptoms of MS. Further studies using a randomized controlled study design are required to establish the degree of benefit of utilizing shared decision-making associated with MS symptomatic care.

Psychometrics of the Multiple Sclerosis and Magnetic Resonance Imaging Knowledge Patient Questionnaire: A Pilot Study.

ABSTRACT: BACKGROUND: In the last few decades, the revised diagnostic criteria for multiple sclerosis (MS) and the development of numerous new MS therapies have created the possibility of early diagnosis and opportune MS management. However, these changes, and the mounting emphasis on patient choice and shared decision making, have not been accompanied by improvements in information provided to patients with MS (PwMS). Information provision for PwMS increases disease-related knowledge that may assist them in decision making and quality of life. The purpose of this study was to validate the Multiple Sclerosis and Magnetic Resonance Imaging Knowledge Questionnaire (MSMRIKQ) to improve patients' shared decision-making capabilities. METHODS: In this methodological study, the instrument development process was completed in 4 stages using principles of measurement theory: (1) establishing a pool of items after patient and clinician panels' review, (2) evaluating the validity of the scale-both face and content validity, (3) pilot testing the scale, and (4) post-pilot testing statistical analysis of items and scale reliability and validity. RESULTS: The 20-item instrument was finalized based on a panel of MS experts' and patients' comments. The final version of the MSMRIKQ was pilot tested with a sample of 46 PwMS. Face validity was established on all MSMRIKQ items. Individual item-level and scale-level content validity indices for universal agreement estimates were acceptable at item-level content validity index = 1 and scale-level content validity index = 1 for the 20 items. The Kuder-Richardson 20 reliability estimate for the entire scale was 0.58; the Kuder-Richardson 20 estimates for the subscales of MS and magnetic resonance imaging knowledge were 0.35 and 0.51, respectively. The split-half reliability with Spearman-Brown correction for the total scale was 0.60. The Poisson regression model was significant for predicting MS knowledge within this population. CONCLUSION: The MSMRIKQ is a basic knowledge instrument for clinical and research use.

The Effect of Body Mass Index on Brain Volume and Cognitive Function in Relapsing-Remitting Multiple sclerosis: A CombiRx Secondary Analysis.

BACKGROUND: Multiple sclerosis (MS) is an autoimmune disease leading to physical, emotional and cognitive disability. High body mass index (BMI) may impact cognitive function and brain volume in MS. Yet, there is paucity of evidence addressing the impact of BMI on cognitive function and brain volume in MS. OBJECTIVES: The purpose of this study was to examine the effects of BMI on normal appearing brain volume and cognitive function in patients with relapsing-remitting MS. METHODS: A secondary data analysis of the NIH CombiRx study was conducted. Multivariate regression and mixed model analyses were executed to analyze the effect of BMI on brain volume and cognitive function. RESULTS: The mean baseline age of the 768 participants was 38.2(SD = 9.4) years. 73% were female and 88.8% were Caucasian. The mean BMI was 28.8 kg/m2(SD = 6.7). The multivariate regression and mixed model analyses failed to show a clinical effect of BMI on brain volume and cognitive function. CONCLUSION: BMI did not show an effect on cognitive function and brain volume among MS patients. Although there is increased interest in the effects of modifiable factors on the course of MS, the effects of BMI on brain volume and cognitive function are debatable and warrant further research.ClinicalTrials.gov NCT00211887.

Self-Perceived Knowledge and Comfort Discussing Palliative Care and End-of-Life Issues among Professionals Managing Neuroinflammatory Diseases.

Background: The growing trend in providing palliative care and end-of-life services has dictated that healthcare providers be adequately trained to care for people with serious illnesses, such as multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD). These progressive inflammatory diseases lead to physical, cognitive and emotional deficits and have exceptionally high care demands leading to high levels of distress. Because the impact on the delivery of patient care is influenced by the specialists' knowledge and comfort discussing end-of-life issues, it is concerning that interventions to address unmet palliative care needs in MS and NMOSD rarely include clinician-patient dyads. Objectives: To evaluate the neurology clinicians' knowledge and level of comfort discussing palliative care and end-of-life issues. Design: A cross sectional survey was conducted. The statistical analyses included frequencies, chi square statistics and logistic regression. Setting/Subjects: 414 MS specialists answered an online anonymous survey. The survey was conducted using email distributions to MS professionals through the Consortium of MS Centers (CMSC), the International Organization of MS Nurses (IOMSN) and the UK Nurses' MS Organization. Measurement: The "End of Life Professional Caregiver Survey" (EPCS) was used to collect data. Results: The majority of the multidisciplinary professionals were female, white, nurses, and older than 40 years of age. 41% had their own advance directives and 57.6% had end-of-life basic training. There was a statistically significant association between end-of-life training or having advance directives and comfort discussing palliative care and end of life issues. Professionals that had basic end-of-life training and their own advance directives had higher comfort discussing code status, specific end-of-life issues, and advance directive planning. Conclusions: Basic end-of-life training and having advance directives among MS professionals were associated with better communication of palliative care and end-of-life domains with patients and their care partners.

Impact of Shared Decision Making on Disease-Modifying Drug Adherence in Multiple Sclerosis.

BACKGROUND: Shared decision making (SDM) and adherence to treatment are an integral part of multiple sclerosis (MS) care. A collaborative process, SDM actively involves the patient, the health care provider, and an extended network in making treatment decisions. Adherence to disease-modifying drug therapies in patients with MS presents an ongoing challenge for patients and health care providers due to the chronic nature of this disease. This narrative review aims to explore the impact of SDM on adherence based on existing literature and to identify new approaches to optimizing adherence. METHODS: A search was conducted using medical subject heading terms, including decision-making, adherence, shared decision-making, compliance, and patient-centered care. RESULTS: Shared decision making between patients and clinicians promotes adherence to the treatment plan in MS. A proactive SDM approach is based on patient preferences, education, and engagement. Providing credible and accurate sources of information is essential for improving patient engagement. Home monitoring, computerized models, and active patient engagement are a few new approaches to improve adherence in patients with MS. CONCLUSIONS: Shared decision-making interventions can have a positive effect on patient adherence to disease-modifying drug therapy in MS care. A range of new strategies is emerging that may help promote optimal disease management.

Multiple sclerosis, relapses, and the mechanism of action of adrenocorticotropic hormone.

Relapses in multiple sclerosis (MS) are disruptive and frequently disabling for patients, and their treatment is often a challenge to clinicians. Despite progress in the understanding of the pathophysiology of MS and development of new treatments for long-term management of MS, options for treating relapses have not changed substantially over the past few decades. Corticosteroids, a component of the hypothalamic-pituitary-adrenal axis that modulate immune responses and reduce inflammation, are currently the mainstay of relapse treatment. Adrenocorticotropic hormone (ACTH) gel is another treatment option. Although it has long been assumed that the efficacy of ACTH in treating relapses depends on the peptide's ability to increase endogenous corticosteroid production, evidence from research on the melanocortin system suggests that steroidogenesis may only partly account for ACTH influences. Indeed, the melanocortin peptides [ACTH and α-, ß-, γ-melanocyte-stimulating hormones (MSH)] and their receptors (Melanocortin receptors, MCRs) exert multiple actions, including modulation of inflammatory and immune mediator production. MCRs are widely distributed within the central nervous system and in peripheral tissues including immune cells (e.g., macrophages). This suggests that the mechanism of action of ACTH includes not only steroid-mediated indirect effects, but also direct anti-inflammatory and immune-modulating actions via the melanocortin system. An increased understanding of the role of the melanocortin system, particularly ACTH, in the immune and inflammatory processes underlying relapses may help to improve relapse management.

Living well with multiple sclerosis.

OVERVIEW: Improvements in magnetic resonance imaging and the advent of disease-modifying therapies in the past 15 years have changed the diagnosis and treatment of multiple sclerosis, an autoimmune disorder affecting the central nervous system. Accordingly, the nursing role has become more complex, involving advocacy, education, research, counseling, and medication administration. This article reviews the pathophysiology of the disorder, the available therapies to treat it, and the challenges patients face when making treatment decisions at various stages in the course of the disease.

Therapeutics for multiple sclerosis symptoms.

Symptoms management in multiple sclerosis is an integral part of its care. Accurate assessment and addressing the different symptoms provides increased quality of life among patients with multiple sclerosis. Multiple sclerosis symptoms may be identified as primary, secondary, or tertiary symptoms. Primary symptoms, such as weakness, sensory loss, and ataxia, are directly related to demyelination and axonal loss. Secondary symptoms, such as urinary tract infections as a result of urinary retention, are a result of the primary symptoms. Tertiary symptoms, such as reactive depression or social isolation, are a result of the social and psychological consequences of the disease. Common multiple sclerosis symptoms include fatigue and weakness; decreased balance, spasticity and gait problems; depression and cognitive issues; bladder, bowel, and sexual deficits; visual and sensory loss; and neuropathic pain. Less-common symptoms include dysarthria and dysphagia, vertigo, and tremors. Rare symptoms in multiple sclerosis include seizures, hearing loss, and paralysis. Symptom management includes nonpharmacological methods, such as rehabilitation and psychosocial support, and pharmacological methods, ie, medications and surgical procedures. The keys to symptom management are awareness, knowledge, and coordination of care. Symptoms have to be recognized and management needs to be individualized. Multiple sclerosis therapeutics include nonpharmacological strategies that consist of lifestyle modifications, rehabilitation, social support, counseling, and pharmacological agents or surgical procedures. The goal is vigilant management to improve quality of life and promote realistic expectations and hope.