Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives

Celius, Elisabeth G; Thompson, H. Stanley; Pontaga, Maija; Langdon, Dawn; Laroni, Alice; Potra, Stanca; Bharadia, Trishna; Yeandle, David; Shanahan, Jane; Galen, Pieter van; Alexandri, Nektaria; Kesselring, Jürg

doi:10.2147/ppa.s268829

Cited by 24 publications

(12 citation statements)

References 83 publications

(136 reference statements)

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“…A recent literature review supports this rationale held by HCPs, that effective communication can enhance the healthcare experience for PwMS, improve treatment adherence and lead to better patient outcomes. 18 In this study, communication was the salient theme across all interviews with both PwMS and HCPs and is clearly a strong determinant of the healthcare experience. Many of the issues identified by PwMS were associated with a lack of open and empathetic communication with their HCPs.…”

Section: Discussionmentioning

confidence: 78%

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Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals

Price

Lucas

Lane

2021

Health Expectations

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Background: Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative condition of the central nervous system that commonly strikes in young adulthood and has no cure. Many people living with MS (PwMS) will have significant contact with a range of healthcare professionals (HCPs). To achieve optimal health outcomes in MS, it is important to understand factors that contribute to positive or negative healthcare experiences. Previous studies have shown that PwMS want clear communication and in-depth relationships with their HCPs. However, many studies have lacked qualitative feedback from HCPs.Objective: This study aimed to investigate healthcare experiences of PwMS and HCPs and identify areas that are working well and areas that could be improved.Methods: Semistructured interviews with 15 PwMS and 11 HCPs (seven neurologists, four MS nurses) from across Australia were conducted. Interviews were transcribed verbatim and analysed thematically.Results: Both PwMS and HCPs valued clear communication, recognized uncertainties associated with MS and highlighted the importance of rapport. PwMS focused on decision-making, understanding roles and expectations, self-directed management and their needs for support. HCPs discussed issues related to medical management, providing hope and reassurance, barriers to healthcare and multidisciplinary care. Conclusion:Greater transparency and communication, particularly around the approach to care and the roles played by HCPs, is likely to enhance healthcare experiences and contribute to better health outcomes for PwMS.

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Section: Discussionmentioning

confidence: 78%

Section: Discussionmentioning

confidence: 99%

Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals

Price

Lucas

Lane

2021

Health Expectations

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“…Until recently, MS research has tended to focus on clinical outcomes, rather than experiential outcomes, and therefore has tended to elide the lives and experiences of people with MS. 5 , 6 , 7 A chronic disease like MS impacts the whole family, but they have been the subject of little research. 8 , 9 , 10 This points to a gap in the literature on the relational world of people with MS, and how this intersects with care.…”

Section: Introductionmentioning

confidence: 99%

“…4 There are a number of treatment options, but which treatment best suits an individual is uncertain and requires complex decision-making for patients and families. 4 Until recently, MS research has tended to focus on clinical outcomes, rather than experiential outcomes, and therefore has tended to elide the lives and experiences of people with MS. [5][6][7] A chronic disease like MS impacts the whole family, but they have been the subject of little research. [8][9][10] This points to a gap in the literature on the relational world of people with MS, and how this intersects with care.…”

mentioning

confidence: 99%

Intertwined like a double helix: A meta‐synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis

Parkinson

Brunoro

Leayr

et al. 2022

Health Expectations

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Background: Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS.Methods: Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring.Results: Of 330 articles, 49 were included in the review. We identified five themes.One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. Conclusion:People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network.

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“…It has been estimated that personalized medicine tools in MS have the potential to increase the impact of treatments by more than 50% by quantifying both disease activity (clinical and subclinical) and the risk of side effects [ 3 ]. In addition to the value of mHealth tools for health-care professionals (HCPs), there is also the potential to further empower PwMS, resulting in an increased self-management and allowing more open and early conversations about disease progression [ 16 , 17 ].…”

Section: Introductionmentioning

confidence: 99%

A Novel Digital Care Management Platform to Monitor Clinical and Subclinical Disease Activity in Multiple Sclerosis

et al. 2021

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In multiple sclerosis (MS), the early detection of disease activity or progression is key to inform treatment changes and could be supported by digital tools. We present a novel CE-marked and FDA-cleared digital care management platform consisting of (1) a patient phone/web application and healthcare professional portal (icompanion) including validated symptom, disability, cognition, and fatigue patient-reported outcomes; and (2) clinical brain magnetic resonance imaging (MRI) quantifications (icobrain ms). We validate both tools using their ability to detect (sub)clinical disease activity (known-groups validity) and real-world data insights. Surveys showed that 95.6% of people with MS (PwMS) were interested in using an MS app, and 98.2% were interested in knowing about MRI changes. The icompanion measures of disability (p < 0.001) and symptoms (p = 0.005) and icobrain ms MRI parameters were sensitive to (sub)clinical differences between MS subtypes. icobrain ms also decreased intra- and inter-rater lesion count variability and increased sensitivity for detecting disease activity/progression from 24% to 76% compared to standard radiological reading. This evidence shows PwMS’ interest, the digital care platform’s potential to improve the detection of (sub)clinical disease activity and care management, and the feasibility of linking different digital tools into one overarching MS care pathway.

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Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives

Cited by 24 publications

References 83 publications

Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals

Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals

Intertwined like a double helix: A meta‐synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis

A Novel Digital Care Management Platform to Monitor Clinical and Subclinical Disease Activity in Multiple Sclerosis

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