We are analyzing https://link.springer.com/article/10.1007/s40120-021-00285-w.

Title:
The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis | Neurology and Therapy
Description:
Introduction A greater understanding of the reality of living with myasthenia gravis (MG) may improve management and outcomes for patients. However, there is little published data on the patient perspective of how MG impacts life. Our objective was to reveal the lived experience of MG from the patient perspective. Methods This analysis was led by an international Patient Council comprising nine individuals living with MG who serve as local/national patient advocates in seven countries (Europe and the United States). Insights into the lived experience of MG were consolidated from three sources (a qualitative research study of 54 people with MG or their carers from seven countries; a previous Patient Council meeting [September 2019]; and a literature review). Insights were prioritised by the Patient Council, discussed during a virtual workshop (August 2020) and articulated in a series of statements organised into domains. Overarching themes that describe the lived experience of MG were identified by the patient authors. Results From 114 patient insights and supporting quotes, the Patient Council defined 44 summary statements organised into nine domains. Five overarching themes were identified that describe the lived experience of MG. These themes include living with fluctuating and unpredictable symptoms; a constant state of adaptation, continual assessment and trade-offs in all aspects of life; treatment inertia, often resulting in under-treatment; a sense of disconnect with healthcare professionals; and feelings of anxiety, frustration, guilt, anger, loneliness and depression. Conclusion This patient-driven analysis enriches our understanding of the reality of living with MG from the patient perspective. Myasthenia gravis from the patient perspective (MP4 65175 kb)
Website Age:
28 years and 1 months (reg. 1997-05-29).

Matching Content Categories {📚}

Education
Careers
Science

Content Management System {📝}

What CMS is link.springer.com built with?

Custom-built

No common CMS systems were detected on Link.springer.com, and no known web development framework was identified.

Traffic Estimate {📈}

What is the average monthly size of link.springer.com audience?

🌠 Phenomenal Traffic: 5M - 10M visitors per month

Based on our best estimate, this website will receive around 5,000,019 visitors per month in the current month.
However, some sources were not loaded, we suggest to reload the page to get complete results.

check SE Ranking
check Ahrefs
check Similarweb
check Ubersuggest
check Semrush

How Does Link.springer.com Make Money? {💸}

We find it hard to spot revenue streams.

Many websites are intended to earn money, but some serve to share ideas or build connections. Websites exist for all kinds of purposes. This might be one of them. Link.springer.com could be secretly minting cash, but we can't detect the process.

Keywords {🔍}

patient, article, pubmed, experience, myasthenia, gravis, council, insights, google, scholar, lived, analysis, living, patients, people, data, life, statements, disease, study, treatment, perspective, central, qualitative, aspects, research, symptoms, pharma, understanding, muscle, domains, themes, impact, rare, ucb, members, sources, identified, authors, insight, law, survey, live, weakness, generalised, chronic, multiple, table, theme, personal,

Topics {✒️}

eu/en/partners-networks/patients-consumers fda-patient-engagement/patient-listening-sessions major motor-functional determinants open-ended comment box european medicines agency org/meetings/defining-therapeutic-inertia article download pdf advancing translational sciences—office encouraging shared decision-making peer-reviewed video retrospectively fast-acting treatments typically reported health-related quality open access maced multicentre cross-sectional study patient council–led exercise patient-acceptable symptom states effective patient–physician relationship patient listening sessions international patient-led analysis health-related quality full access local/national patient advocates patient-driven analysis enriches privacy choices/manage cookies life-threatening myasthenic crisis central fatigue experienced patient council–led analysis report central fatigue european economic area american association qualitative research survey qualitative research study pre-meeting survey patient council defined patient author video global qualitative study illness-related trauma [39] lorenzana-mendoza na ongoing clinical research qual health res make continuous assessments making numerous conscious obtain permission directly related subjects psychiatry search search present patient-reported outcomes neurology annual meeting envision pharma group antibody-mediated interference improved diagnostic techniques

Questions {❓}

At the end of the survey, Patient Council members were asked ‘Are there any positive aspects of living with MG as a chronic condition which you would like to share?
Despite a growing wealth of published literature, how much do we really understand about what it means to live with MG from the patient perspective?
Impact of myasthenia gravis on family planning: how do women with myasthenia gravis decide and why?
What did we learn from this analysis?
Why carry out this analysis?

Schema {🗺️}

WebPage:
      mainEntity:
         headline:The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis
         description:A greater understanding of the reality of living with myasthenia gravis (MG) may improve management and outcomes for patients. However, there is little published data on the patient perspective of how MG impacts life. Our objective was to reveal the lived experience of MG from the patient perspective. This analysis was led by an international Patient Council comprising nine individuals living with MG who serve as local/national patient advocates in seven countries (Europe and the United States). Insights into the lived experience of MG were consolidated from three sources (a qualitative research study of 54 people with MG or their carers from seven countries; a previous Patient Council meeting [September 2019]; and a literature review). Insights were prioritised by the Patient Council, discussed during a virtual workshop (August 2020) and articulated in a series of statements organised into domains. Overarching themes that describe the lived experience of MG were identified by the patient authors. From 114 patient insights and supporting quotes, the Patient Council defined 44 summary statements organised into nine domains. Five overarching themes were identified that describe the lived experience of MG. These themes include living with fluctuating and unpredictable symptoms; a constant state of adaptation, continual assessment and trade-offs in all aspects of life; treatment inertia, often resulting in under-treatment; a sense of disconnect with healthcare professionals; and feelings of anxiety, frustration, guilt, anger, loneliness and depression. This patient-driven analysis enriches our understanding of the reality of living with MG from the patient perspective.
         datePublished:2021-10-23T00:00:00Z
         dateModified:2022-03-06T00:00:00Z
         pageStart:1103
         pageEnd:1125
         license:http://creativecommons.org/licenses/by-nc/4.0/
         sameAs:https://doi.org/10.1007/s40120-021-00285-w
         keywords:
            Myasthenia gravis
            Lived experience
            Patient perspective
            Qualitative
            Internal Medicine
            Neurology
         image:
            https://media.springernature.com/lw1200/springer-static/image/art%3A10.1007%2Fs40120-021-00285-w/MediaObjects/40120_2021_285_Fig1_HTML.png
         isPartOf:
            name:Neurology and Therapy
            issn:
               2193-6536
               2193-8253
            volumeNumber:10
            type:
               Periodical
               PublicationVolume
         publisher:
            name:Springer Healthcare
            logo:
               url:https://www.springernature.com/app-sn/public/images/logo-springernature.png
               type:ImageObject
            type:Organization
         author:
               name:Nancy Law
               affiliation:
                     name:Patient Author, MG Patient Advocate
                     address:
                        name:Patient Author, MG Patient Advocate, Parker, USA
                        type:PostalAddress
                     type:Organization
               type:Person
               name:Kelly Davio
               affiliation:
                     name:Patient Author, MG Patient Advocate
                     address:
                        name:Patient Author, MG Patient Advocate, London, UK
                        type:PostalAddress
                     type:Organization
               type:Person
               name:Melissa Blunck
               affiliation:
                     name:UCB Pharma
                     address:
                        name:UCB Pharma, Smyrna, USA
                        type:PostalAddress
                     type:Organization
               type:Person
               name:Dawn Lobban
               affiliation:
                     name:Envision Pharma Group
                     address:
                        name:Envision Pharma Group, Cheshire, UK
                        type:PostalAddress
                     type:Organization
               type:Person
               name:Kenza Seddik
               affiliation:
                     name:UCB Pharma
                     address:
                        name:UCB Pharma, Paris, France
                        type:PostalAddress
                     type:Organization
                     name:
                     address:
                        name:Colombes, France
                        type:PostalAddress
                     type:Organization
               email:[email protected]
               type:Person
         isAccessibleForFree:1
         type:ScholarlyArticle
      context:https://schema.org
ScholarlyArticle:
      headline:The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis
      description:A greater understanding of the reality of living with myasthenia gravis (MG) may improve management and outcomes for patients. However, there is little published data on the patient perspective of how MG impacts life. Our objective was to reveal the lived experience of MG from the patient perspective. This analysis was led by an international Patient Council comprising nine individuals living with MG who serve as local/national patient advocates in seven countries (Europe and the United States). Insights into the lived experience of MG were consolidated from three sources (a qualitative research study of 54 people with MG or their carers from seven countries; a previous Patient Council meeting [September 2019]; and a literature review). Insights were prioritised by the Patient Council, discussed during a virtual workshop (August 2020) and articulated in a series of statements organised into domains. Overarching themes that describe the lived experience of MG were identified by the patient authors. From 114 patient insights and supporting quotes, the Patient Council defined 44 summary statements organised into nine domains. Five overarching themes were identified that describe the lived experience of MG. These themes include living with fluctuating and unpredictable symptoms; a constant state of adaptation, continual assessment and trade-offs in all aspects of life; treatment inertia, often resulting in under-treatment; a sense of disconnect with healthcare professionals; and feelings of anxiety, frustration, guilt, anger, loneliness and depression. This patient-driven analysis enriches our understanding of the reality of living with MG from the patient perspective.
      datePublished:2021-10-23T00:00:00Z
      dateModified:2022-03-06T00:00:00Z
      pageStart:1103
      pageEnd:1125
      license:http://creativecommons.org/licenses/by-nc/4.0/
      sameAs:https://doi.org/10.1007/s40120-021-00285-w
      keywords:
         Myasthenia gravis
         Lived experience
         Patient perspective
         Qualitative
         Internal Medicine
         Neurology
      image:
         https://media.springernature.com/lw1200/springer-static/image/art%3A10.1007%2Fs40120-021-00285-w/MediaObjects/40120_2021_285_Fig1_HTML.png
      isPartOf:
         name:Neurology and Therapy
         issn:
            2193-6536
            2193-8253
         volumeNumber:10
         type:
            Periodical
            PublicationVolume
      publisher:
         name:Springer Healthcare
         logo:
            url:https://www.springernature.com/app-sn/public/images/logo-springernature.png
            type:ImageObject
         type:Organization
      author:
            name:Nancy Law
            affiliation:
                  name:Patient Author, MG Patient Advocate
                  address:
                     name:Patient Author, MG Patient Advocate, Parker, USA
                     type:PostalAddress
                  type:Organization
            type:Person
            name:Kelly Davio
            affiliation:
                  name:Patient Author, MG Patient Advocate
                  address:
                     name:Patient Author, MG Patient Advocate, London, UK
                     type:PostalAddress
                  type:Organization
            type:Person
            name:Melissa Blunck
            affiliation:
                  name:UCB Pharma
                  address:
                     name:UCB Pharma, Smyrna, USA
                     type:PostalAddress
                  type:Organization
            type:Person
            name:Dawn Lobban
            affiliation:
                  name:Envision Pharma Group
                  address:
                     name:Envision Pharma Group, Cheshire, UK
                     type:PostalAddress
                  type:Organization
            type:Person
            name:Kenza Seddik
            affiliation:
                  name:UCB Pharma
                  address:
                     name:UCB Pharma, Paris, France
                     type:PostalAddress
                  type:Organization
                  name:
                  address:
                     name:Colombes, France
                     type:PostalAddress
                  type:Organization
            email:[email protected]
            type:Person
      isAccessibleForFree:1
["Periodical","PublicationVolume"]:
      name:Neurology and Therapy
      issn:
         2193-6536
         2193-8253
      volumeNumber:10
Organization:
      name:Springer Healthcare
      logo:
         url:https://www.springernature.com/app-sn/public/images/logo-springernature.png
         type:ImageObject
      name:Patient Author, MG Patient Advocate
      address:
         name:Patient Author, MG Patient Advocate, Parker, USA
         type:PostalAddress
      name:Patient Author, MG Patient Advocate
      address:
         name:Patient Author, MG Patient Advocate, London, UK
         type:PostalAddress
      name:UCB Pharma
      address:
         name:UCB Pharma, Smyrna, USA
         type:PostalAddress
      name:Envision Pharma Group
      address:
         name:Envision Pharma Group, Cheshire, UK
         type:PostalAddress
      name:UCB Pharma
      address:
         name:UCB Pharma, Paris, France
         type:PostalAddress
      name:
      address:
         name:Colombes, France
         type:PostalAddress
ImageObject:
      url:https://www.springernature.com/app-sn/public/images/logo-springernature.png
Person:
      name:Nancy Law
      affiliation:
            name:Patient Author, MG Patient Advocate
            address:
               name:Patient Author, MG Patient Advocate, Parker, USA
               type:PostalAddress
            type:Organization
      name:Kelly Davio
      affiliation:
            name:Patient Author, MG Patient Advocate
            address:
               name:Patient Author, MG Patient Advocate, London, UK
               type:PostalAddress
            type:Organization
      name:Melissa Blunck
      affiliation:
            name:UCB Pharma
            address:
               name:UCB Pharma, Smyrna, USA
               type:PostalAddress
            type:Organization
      name:Dawn Lobban
      affiliation:
            name:Envision Pharma Group
            address:
               name:Envision Pharma Group, Cheshire, UK
               type:PostalAddress
            type:Organization
      name:Kenza Seddik
      affiliation:
            name:UCB Pharma
            address:
               name:UCB Pharma, Paris, France
               type:PostalAddress
            type:Organization
            name:
            address:
               name:Colombes, France
               type:PostalAddress
            type:Organization
      email:[email protected]
PostalAddress:
      name:Patient Author, MG Patient Advocate, Parker, USA
      name:Patient Author, MG Patient Advocate, London, UK
      name:UCB Pharma, Smyrna, USA
      name:Envision Pharma Group, Cheshire, UK
      name:UCB Pharma, Paris, France
      name:Colombes, France

External Links {🔗}(206)

Analytics and Tracking {📊}

Google Tag Manager

Libraries {📚}

Clipboard.js
Prism.js
Video.js

CDN Services {📦}

Crossref
Net/play">

Myasthenia gravis from the patient perspective (MP4 65175 kb)

LINK . SPRINGER . COM {}