Predominant cognitive phenotypes in multiple sclerosis: insights from patient-centered outcomes

Background Disability is prevalent in individuals with multiple sclerosis (MS), leading to difficulty in care access, significant caregiver burden, immense challenges in self-care and great societal burden. Without highly coordinated, competent and accessible care, individuals living with progressive MS experience psychological distress, poor quality of life, suffer from life-threatening complications, and have frequent but avoidable healthcare utilizations. Unfortunately, current healthcare delivery models present severe limitations in providing easily accessible, patient-centered, coordinated comprehensive care to those with progressive MS. We propose a home-based comprehensive care model (MAHA) to address the unmet needs, challenges, and avoidable complications in individuals with progressive MS with disabling disease.Objective The article aims to describe the study design and methods used to implement and evaluate the proposed intervention. Method The study will use a randomized controlled design to evaluate the feasibility of providing a 24-month, home-based, patient-centered comprehensive care program to improve quality of life, reduce complications and healthcare utilizations overtime (quarterly) for 24 months. A transdisciplinary team led by a MS-Comprehensivist will carry out this project. Fifty MS patients will be randomly assigned to the intervention and usual care program using block randomization procedures. We hypothesize that patients in the intervention group will have fewer complications, higher quality of life, greater satisfaction with care, and reduced healthcare utilization. The proposed project is also expected to be financially sustainable in fee-for-service models but best suited for and gain financial success in valued-based care systems. Discussion This is the first study to examine the feasibility and effectiveness of a home-based comprehensive care management program in MS patients living with progressive disability. If successful, it will have far-reaching implications in research, education and practice in terms of providing high quality but affordable care to population living with severe complex, disabling conditions.

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Primary Care for the Multiple Sclerosis Patient

Medical Research Archives ◽

10.18103/mra.v8i11.2285 ◽

2020 ◽

Vol 8 (11) ◽

Author(s):

Vijay Aswani

Keyword(s):

Multiple Sclerosis ◽

Primary Care ◽

Multiple Sclerosis Patient ◽

Medical Home ◽

Signs And Symptoms ◽

Patient Centered Medical Home ◽

Preventative Care ◽

Patient Centered ◽

Primary Care Practitioners ◽

Immunosuppression Therapy

Multiple sclerosis is the commonest non-traumatic disabling disease that affects young adults. The presenting signs and symptoms include several common symptoms seen in primary care. It therefore behooves primary care practitioners to recognize the disease’s presentation, mimicking diagnoses and initial workup. Management of many of the symptoms of disease exacerbations are within the purview of the primary care provider. Co-management of the patient with multiple sclerosis with a neurologist improves patient care and provides a context for management of co-morbidities. The patient-centered medical home provides many services and resources that can be of use to a multiple sclerosis patient. Vaccinations and other preventative care are important in the care of the multiple sclerosis patient, particularly those on immunosuppression therapy for their disease.

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A Tripartite Knowledge Translation Program: Innovative Patient-Centered Approach to Clinical Research Participation for Individuals with Multiple Sclerosis

Multiple Sclerosis International ◽

10.1155/2021/5531693 ◽

2021 ◽

Vol 2021 ◽

pp. 1-7

Author(s):

Aman Saini ◽

Colleen Cochran ◽

Audrey Zucker-Levin ◽

Sarah J. Donkers ◽

Pawan Kumar ◽

...

Keyword(s):

Multiple Sclerosis ◽

Knowledge Translation ◽

Clinical Research ◽

Research Program ◽

Research Participation ◽

Research Process ◽

Patient Centered ◽

Research Activities ◽

Strongly Agree ◽

Experiential Research

Background. Knowledge translation (KT) models that represent an individual’s perspective are a sign of effective KT. Some common challenges in KT include participant engagement, organization of the team, and time demands of the participants. We implemented a unique tripartite KT program to (1) share current research, (2) inform persons living with multiple sclerosis (pwMS) about the clinical research process, and (3) invite pwMS to immediately participate in clinical research. The primary aim was to determine participants’ perspectives on the value and acceptability of an experiential research program offered at a patient and family educational conference. Methods. A team of researchers identified factors that would impact the logistics of hosting an experiential research program at a conference and designed a unique tripartite KT program. The local multiple sclerosis (MS) society was engaged to select an appropriate location and invite stakeholders to the conference. A survey to determine participants’ perspectives on the value and acceptability of the experiential research program was developed and analyzed. Results. 65 pwMS attended the conference, and 44 (67.7%) participated in the on-site experiential research program. 72.7% of the participants completed the survey, of which 93.8% stated that they strongly agree or agree with the following statements: “Did you feel like participating in research today was a valuable experience to you?” and “Did you feel like you were contributing to MS research?” 100% of the participants agreed or strongly agreed when asked “would you like to see more research activities taking place at these kinds of events?” Conclusions. This paper describes the logistics and challenges of conducting an experiential KT program, which proved to be rewarding for pwMS. The majority of pwMS attending the conference agreed to participate in the on-site experiential research program and an overwhelming majority of participants felt the experience was valuable.

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Bringing the Patient-Centered Specialty Practice Model to Multiple Sclerosis Patients

Neurology Today ◽

10.1097/01.nt.0000502828.51010.23 ◽

2016 ◽

Vol 16 (18) ◽

pp. 2-4

Author(s):

Gina Shaw

Keyword(s):

Multiple Sclerosis ◽

Patient Centered ◽

Practice Model ◽

Specialty Practice ◽

Multiple Sclerosis Patients

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Digital Twins for Multiple Sclerosis

Frontiers in Immunology ◽

10.3389/fimmu.2021.669811 ◽

2021 ◽

Vol 12 ◽

Author(s):

Isabel Voigt ◽

Hernan Inojosa ◽

Anja Dillenseger ◽

Rocco Haase ◽

Katja Akgün ◽

...

Keyword(s):

Multiple Sclerosis ◽

Disease Progression ◽

Clinical Pathways ◽

Well Being ◽

Patient Data ◽

Multiple Sources ◽

Patient Centered ◽

Related Data ◽

Digital Twins ◽

Centered Care

An individualized innovative disease management is of great importance for people with multiple sclerosis (pwMS) to cope with the complexity of this chronic, multidimensional disease. However, an individual state of the art strategy, with precise adjustment to the patient’s characteristics, is still far from being part of the everyday care of pwMS. The development of digital twins could decisively advance the necessary implementation of an individualized innovative management of MS. Through artificial intelligence-based analysis of several disease parameters – including clinical and para-clinical outcomes, multi-omics, biomarkers, patient-related data, information about the patient’s life circumstances and plans, and medical procedures – a digital twin paired to the patient’s characteristic can be created, enabling healthcare professionals to handle large amounts of patient data. This can contribute to a more personalized and effective care by integrating data from multiple sources in a standardized manner, implementing individualized clinical pathways, supporting physician-patient communication and facilitating a shared decision-making. With a clear display of pre-analyzed patient data on a dashboard, patient participation and individualized clinical decisions as well as the prediction of disease progression and treatment simulation could become possible. In this review, we focus on the advantages, challenges and practical aspects of digital twins in the management of MS. We discuss the use of digital twins for MS as a revolutionary tool to improve diagnosis, monitoring and therapy refining patients’ well-being, saving economic costs, and enabling prevention of disease progression. Digital twins will help make precision medicine and patient-centered care a reality in everyday life.

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Shared Decision Making and Autonomy Among US Participants with Multiple Sclerosis in the NARCOMS Registry

International Journal of MS Care ◽

10.7224/1537-2073.2016-091 ◽

2017 ◽

Vol 19 (6) ◽

pp. 303-312 ◽

Cited By ~ 16

Author(s):

Stacey S. Cofield ◽

Nina Thomas ◽

Tuula Tyry ◽

Robert J. Fox ◽

Amber Salter

Keyword(s):

Multiple Sclerosis ◽

Decision Making ◽

Shared Decision Making ◽

Treatment Decision ◽

Treatment Decisions ◽

Shared Decision ◽

Research Committee ◽

Patient Centered ◽

Related Factors ◽

Treatment Decision Making

Background: Treatment decisions in multiple sclerosis (MS) are affected by many factors and are made by the patient, doctor, or both. With new disease-modifying therapies (DMTs) emerging, the complexity surrounding treatment decisions is increasing, further emphasizing the importance of understanding decision-making preferences. Methods: North American Research Committee on Multiple Sclerosis (NARCOMS) Registry participants completed the Fall 2014 Update survey, which included the Control Preferences Scale (CPS). The CPS consists of five images showing different patient/doctor roles in treatment decision making. The images were collapsed to three categories: patient-centered, shared, and physician-centered decision-making preferences. Associations between decision-making preferences and demographic and clinical factors were evaluated using multivariable logistic regression. Results: Of 7009 participants, 79.3% were women and 93.5% were white (mean [SD] age, 57.6 [10.3] years); 56.7% reported a history of relapses. Patient-centered decision making was most commonly preferred by participants (47.9%), followed by shared decision making (SDM; 42.8%). SDM preference was higher for women and those taking DMTs and increased with age and disease duration (all P < .05). Patient-centered decisions were most common for respondents not taking a DMT at the time of the survey and were preferred by those who had no DMT history compared with those who had previously taken a DMT (P < .0001). There was no difference in SDM preference by current MS disease course after adjusting for other disease-related factors. Conclusions: Responders reported most commonly considering their doctor's opinion before making a treatment decision and making decisions jointly with their doctor. DMT use, gender, and age were associated with decision-making preference.

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Decreasing emergency department utilization in a multiple sclerosis patient-centered specialty practice: an advanced multimodal approach

10.26226/morressier.5b719e455aff74008ae4ce25 ◽

2018 ◽

Author(s):

Susan Stuart

Keyword(s):

Multiple Sclerosis ◽

Emergency Department ◽

Multiple Sclerosis Patient ◽

Emergency Department Utilization ◽

Multimodal Approach ◽

Patient Centered ◽

Specialty Practice

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An international discrete choice experiment assessing patients' preferences for disease-modifying therapy attributes in multiple sclerosis

Neurodegenerative Disease Management ◽

10.2217/nmt-2020-0034 ◽

2020 ◽

Vol 10 (6) ◽

pp. 369-382

Author(s):

Birgit Bauer ◽

Bernd Brockmeier ◽

Virginia Devonshire ◽

Arthur Charbonne ◽

Daniela Wach ◽

...

Keyword(s):

Multiple Sclerosis ◽

Discrete Choice Experiment ◽

Discrete Choice ◽

Choice Experiment ◽

Online Survey ◽

Treatment Preferences ◽

Dosing Regimen ◽

Patient Centered ◽

Disease Modifying Therapy ◽

Centered Care

Aim: This discrete choice experiment aimed to assess patients' preferences for treatment attributes in multiple sclerosis (MS). Patients & methods: Patients with relapsing-remitting MS completed an online survey assessing treatment preferences. Descriptive statistical analysis and discrete choice hierarchical Bayesian modeling were performed. Results: Across the overall sample (n = 485), dosing regimen, efficacy and safety were equally important. Within the whole sample, and among those diagnosed <10 years ago, intravenous infusion ≤3 times/year was the preferred dosing regimen; among patients diagnosed ≥10 years ago it was preferred equally to oral treatments. Patients were more willing to accept frequent but mild over rare but severe side effects. Conclusion: Several factors influence patient preferences for MS treatments and must be considered in patient-centered care.

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