Building a monitoring matrix for the management of multiple sclerosis

Voigt, Isabel; Inojosa, Hernán; Wenk, Joachim; Akgün, Katja; Ziemssen, Tjalf

doi:10.1016/j.autrev.2023.103358

Cited by 12 publications

(13 citation statements)

References 112 publications

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“…Self-reporting of symptoms early in the disease course may benefit treatment strategies [ 17 , 48 ]. PROs have scope to play an important role in describing symptom development and progression in MS disease processes, particularly in the context of disability progression independent of relapse activity [ 49 ]. PROs may also provide an approximate means to assess disease progression before it would typically be captured through routine clinical assessments, which may occur annually or less frequently.…”

Section: Discussionmentioning

confidence: 99%

Understanding the Symptoms and Impacts Experienced by People with Relapsing–Remitting MS: A Qualitative Investigation Using Semi-Structured Interviews

Barrett,

Olayinka-Amao,

Ziemssen

et al. 2024

Neurol Ther

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Introduction Multiple sclerosis (MS) is a disabling disease with unpredictable clinical manifestations. As clinical assessments may not fully capture the impact of MS on quality of life, they can be complemented by patient-reported outcome (PRO) measures to provide a more comprehensive picture of MS disease state and impact. The objectives of this study were to explore the experiences of people with relapsing–remitting MS, including symptoms and impacts on daily life, and to provide a conceptual model of MS outcomes. Methods A literature review of studies that evaluated the experiences of people with MS was completed and combined with semi-structured concept elicitation interviews conducted with 14 people with relapsing–remitting MS in the USA. Results The average age of the 14 participants was 43.9 (range 25–64) years, most were White (78.6%) and female (78.6%), and the mean duration since diagnosis was 6.6 (2–10) years. The most bothersome symptoms identified included fatigue ( n = 9), cognitive dysfunction ( n = 5), mobility/difficulty with walking ( n = 3), and vision problems ( n = 3). The most commonly reported impacts on daily life were balance problems/instability ( n = 13), work life/productivity ( n = 12), difficulty walking ( n = 11), daily activities/household chores ( n = 11), and leisure activities ( n = 10). Conclusion There was a high frequency of concepts associated with physical function, fatigue, and sensory-motor actions. A conceptual model was developed that captures the disease symptoms, impairments, and impacts identified in the interviews as well as known processes and symptoms identified in the literature search. This model underpins the appropriateness of PRO instruments, such as the PROMIS Fatigue (MS) 8a and PROMIS Physical Function (MS) 15a, which evaluate symptoms and impacts that matter most to people with MS. Supplementary Information The online version contains supplementary material available at 10.1007/s40120-024-00584-y.

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Section: Discussionmentioning

confidence: 99%

Understanding the Symptoms and Impacts Experienced by People with Relapsing–Remitting MS: A Qualitative Investigation Using Semi-Structured Interviews

Barrett,

Olayinka-Amao,

Ziemssen

et al. 2024

Neurol Ther

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“…Overall, good management of fatigue in MS starts with accurate, continuous, and multimodal monitoring. This includes the PROs and objective data regarding acute symptoms, chronic impairments, and comorbidities (Voigt et al, 2023 ).…”

Section: Current State-of-the-art In Fatigue In Msmentioning

confidence: 99%

“…This was evident during the COVID-19 pandemic as regular outpatient visits were frequently not performable due to the lockdown-related restrictions or their fear of being infected. Therefore, eHealth is proposed as an expedient to bridge the temporal and spatial gap between the visits in the clinics (Haase et al, 2021 ; Scholz et al, 2021 ; van der Walt et al, 2021 ; Voigt et al, 2023 ).…”

Section: The Concept Of Digital Assessment and Management Of Multiple...mentioning

confidence: 99%

Management of multiple sclerosis fatigue in the digital age: from assessment to treatment

Pinarello,

Elmers,

Inojosa

et al. 2023

Front. Neurosci.

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Fatigue is one of the most disabling symptoms of Multiple Sclerosis (MS), affecting more than 80% of patients over the disease course. Nevertheless, it has a multi-faceted and complex nature, making its diagnosis, evaluation, and treatment extremely challenging in clinical practice. In the last years, digital supporting tools have emerged to support the care of people with MS. These include not only smartphone or table-based apps, but also wearable devices or novel techniques such as virtual reality. Furthermore, an additional effective and cost-efficient tool for the therapeutic management of people with fatigue is becoming increasingly available. Virtual reality and e-Health are viable and modern tools to both assess and treat fatigue, with a variety of applications and adaptability to patient needs and disability levels. Most importantly, they can be employed in the patient's home setting and can not only bridge clinic visits but also be complementary to the monitoring and treatment means for those MS patients who live far away from healthcare structures. In this narrative review, we discuss the current knowledge and future perspectives in the digital management of fatigue in MS. These may also serve as sources for research of novel digital biomarkers in the identification of disease activity and progression.

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“…There are two definitions used to monitor the accumulation and characteristics of physical disability in MS patients. The first definition and the basis of disability in relapsing remitting multiple sclerosis is relapse-associated worsening (RAW), and the other is progression-independent worsening (PIRA), which forms the basis of the progression 12,13 . Both RAW and PIRA use the EDSS as the main parameter in defining disability accumulation in confirmed disability progression (CDP).…”

Section: Introductionmentioning

confidence: 99%

“…Furthermore, even though the EDSS has certain disadvantages, this study aims to show that it will continue to be the primary endpoint in the long term. Documenting the long-term clinical and demographic characteristics of MS that can cause physical disability is of great importance in creating algorithms and decision models to predict the prognosis at the start of the disease 13,14 .…”

Section: Introductionmentioning

confidence: 99%

Multipl sklerozda uzun dönem yeti yitimi: 20 yıllık uzunlamasına bir çalışma

BÜNÜL

2023

Cukurova Medical Journal

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Purpose: This study investigated the long-term clinical and demographic characteristics of multiple sclerosis (MS) patients to predict disease prognosis. Materials and Methods: Two hundred and seventy-five MS patients diagnosed using the Poser or McDonald criteria were retrospectively analyzed. They were categorized based on their Expanded Disability Status Scale (EDSS) scores: below 4 (group 1) and 4 or above (group 2). Results: The average patient age was 55.45 ± 9.63 years, with a disease duration of 26.76 ± 6.08 years. The initial EDSS scores increased from 2.56 ± 2.36 to 4.23 ± 1.8 after 20 years. Of the patients, 69.1% had EDSS scores of 4 or higher after 20 years. Notably, patients with supratentorial and spinal cord involvement at onset had higher EDSS scores. Logistic regression analysis revealed that a higher initial EDSS score, no full recovery after the first attack, and a longer duration between attacks were associated with a higher risk of an EDSS score of 4 or above. Conclusion: Thisr study shows that an increase in the initial EDSS score is predictive of long-term disability in patients with MS. Having information on long-term, real-life data in MS is highly valuable in terms of understanding the course of the disease, its monitoring, and treatment selection.

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Building a monitoring matrix for the management of multiple sclerosis

Cited by 12 publications

References 112 publications

Understanding the Symptoms and Impacts Experienced by People with Relapsing–Remitting MS: A Qualitative Investigation Using Semi-Structured Interviews

Understanding the Symptoms and Impacts Experienced by People with Relapsing–Remitting MS: A Qualitative Investigation Using Semi-Structured Interviews

Management of multiple sclerosis fatigue in the digital age: from assessment to treatment

Multipl sklerozda uzun dönem yeti yitimi: 20 yıllık uzunlamasına bir çalışma

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