We are analyzing https://link.springer.com/article/10.1007/s40120-025-00770-6.

Title:
Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease: Qualitative Patient and Clinician Interviews Informing the Development of a Conceptual Model | Neurology and Therapy
Description:
Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune demyelinating central nervous system disease. Currently, little is known about the signs, symptoms, and health-related quality of life (HRQoL) impact of MOGAD from the patient perspective. This study explored the patient experience of MOGAD through concept elicitation interviews with patients with MOGAD and clinicians to develop a conceptual model of MOGAD. A preliminary conceptual model of MOGAD signs, symptoms, treatments, and HRQoL impacts was developed based on a review of the published literature. Thematic analysis of semi-structured interviews with patients and clinicians was used to develop the final conceptual model. Twelve patients with MOGAD and two clinicians were interviewed. The most common patient-reported symptoms were eye pain, fatigue, body aches/pain, headaches, and blurred vision. Eye pain and body aches/pain were reported as the most bothersome symptoms and most important to improve with treatment. The HRQoL impacts most commonly reported by patients were difficulty with carrying out household chores, inability to work, depression, and difficulty walking. Impacts on work/school were considered by patients as the most bothersome to their HRQoL and the most important to resolve. Following the interviews, a final conceptual model was produced that reported 32 symptoms across seven domains (constitutional; visual; general neurological; sensory-motor neurological; genitourinary; gastrointestinal; and chest-related, respiratory, and throat) and 50 HRQoL impacts across eight domains (emotional wellbeing, activities of daily living, physical functioning, social functioning, work/school, cognitive functioning, sleep, and financial). This study provides important insights into the patient experience of MOGAD from patient and clinician perspectives, highlighting the underappreciated burden of the disease. The final conceptual model demonstrates the heterogeneity of MOGAD symptoms and their impact on patients’ HRQoL. Future treatment trials should consider including appropriate measures to evaluate the key symptoms and HRQoL impacts identified in this study. Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune disease in which the immune system attacks the fatty substance that protects nerves in the central nervous system. MOGAD shares overlapping similarities with multiple sclerosis and neuromyelitis optica spectrum disorder. MOGAD has recently been recognized as a distinct disease, and studies exploring the patient experience of MOGAD are limited. This study was conducted to better understand the symptoms of MOGAD and how MOGAD affects quality of life (impacts). We collected information from published studies and patient blogs and conducted interviews with patients and doctors who treat MOGAD. This information was used to develop a visual representation of the patient experience called a ‘conceptual model,’ which includes information about specific symptoms and impacts. The conceptual model includes 32 symptoms and 50 impacts of MOGAD. MOGAD symptoms were grouped into categories: constitutional (general effect of the disease); visual; neurological (general, affecting the brain, spinal cord or nerves; and sensory-motor, affecting how the brain processes sensory information and controls motor movement); genitourinary (affecting reproductive and urinary systems); gastrointestinal (digestive); and chest-related, respiratory (breathing), and throat. MOGAD was found to impact activities of daily living (essential tasks that allow a person to live independently), physical functioning, emotional wellbeing, social functioning, cognitive functioning, work/school, sleep, and finances. The model shows that MOGAD has many different symptoms and that the disease can impact many aspects of patients’ lives. The conceptual model and study findings can inform future clinical trials to ensure that symptoms most important to patients are addressed by treatments.
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Keywords {🔍}

mogad, patients, symptoms, patient, disease, pubmed, reported, article, study, interviews, google, scholar, conceptual, model, impacts, hrqol, experience, oligodendrocyte, glycoprotein, myelin, clinical, qualitative, impact, clinicians, antibodyassociated, research, pain, central, concepts, data, clinician, neurol, literature, symptom, treatment, important, analysis, review, size, saturation, information, quality, life, eye, findings, fig, domains, diagnosis, table, published,

Topics {✒️}

n-methyl-d-aspartate central nervous system mog antibody-positive disease aquaporin-4 antibody-positive nmosd aqp4-igg-positive article download pdf multi-criteria decision analysis myelin oligodendrocyte glycoprotein patient blogs/forums/stories full-time employment due google scholar reporting body aches/pain lopez-chiriboga ass current data-protection guidance semi-structured interview guides cross-sectional patient privacy choices/manage cookies acute optic neuropathy open health communications relevant eligibility criteria overlapping autoimmune encephalitis full-text review full-text articles mogad optic neuritis small sample size immune system attacks theory-based interview studies acquired demyelinating syndromes health-related quality medical records stating chronic mogad-related pain concept elicitation interviews full access nmo spectrum disorders sample size calculation neurological sensory-motor symptom full-time employment medical product development mog-igg seropositive mog-igg seropositivity clinical diagnostic criteria met eligibility criteria open-ended questioning anti-epileptic medications ladakis dc conceptual model demonstrates sample size aligned adequate sample size common patient-reported symptoms inform future research

Questions {❓}

Forcing" of empirical data?
How many subjects are enough for symptom-focused concept elicitation studies?
Myelin oligodendrocyte glycoprotein antibody-associated disorders: toward a new spectrum of inflammatory demyelinating CNS disorders?
What is an adequate sample size?

Schema {🗺️}

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         description:Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune demyelinating central nervous system disease. Currently, little is known about the signs, symptoms, and health-related quality of life (HRQoL) impact of MOGAD from the patient perspective. This study explored the patient experience of MOGAD through concept elicitation interviews with patients with MOGAD and clinicians to develop a conceptual model of MOGAD. A preliminary conceptual model of MOGAD signs, symptoms, treatments, and HRQoL impacts was developed based on a review of the published literature. Thematic analysis of semi-structured interviews with patients and clinicians was used to develop the final conceptual model. Twelve patients with MOGAD and two clinicians were interviewed. The most common patient-reported symptoms were eye pain, fatigue, body aches/pain, headaches, and blurred vision. Eye pain and body aches/pain were reported as the most bothersome symptoms and most important to improve with treatment. The HRQoL impacts most commonly reported by patients were difficulty with carrying out household chores, inability to work, depression, and difficulty walking. Impacts on work/school were considered by patients as the most bothersome to their HRQoL and the most important to resolve. Following the interviews, a final conceptual model was produced that reported 32 symptoms across seven domains (constitutional; visual; general neurological; sensory-motor neurological; genitourinary; gastrointestinal; and chest-related, respiratory, and throat) and 50 HRQoL impacts across eight domains (emotional wellbeing, activities of daily living, physical functioning, social functioning, work/school, cognitive functioning, sleep, and financial). This study provides important insights into the patient experience of MOGAD from patient and clinician perspectives, highlighting the underappreciated burden of the disease. The final conceptual model demonstrates the heterogeneity of MOGAD symptoms and their impact on patients’ HRQoL. Future treatment trials should consider including appropriate measures to evaluate the key symptoms and HRQoL impacts identified in this study. Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune disease in which the immune system attacks the fatty substance that protects nerves in the central nervous system. MOGAD shares overlapping similarities with multiple sclerosis and neuromyelitis optica spectrum disorder. MOGAD has recently been recognized as a distinct disease, and studies exploring the patient experience of MOGAD are limited. This study was conducted to better understand the symptoms of MOGAD and how MOGAD affects quality of life (impacts). We collected information from published studies and patient blogs and conducted interviews with patients and doctors who treat MOGAD. This information was used to develop a visual representation of the patient experience called a ‘conceptual model,’ which includes information about specific symptoms and impacts. The conceptual model includes 32 symptoms and 50 impacts of MOGAD. MOGAD symptoms were grouped into categories: constitutional (general effect of the disease); visual; neurological (general, affecting the brain, spinal cord or nerves; and sensory-motor, affecting how the brain processes sensory information and controls motor movement); genitourinary (affecting reproductive and urinary systems); gastrointestinal (digestive); and chest-related, respiratory (breathing), and throat. MOGAD was found to impact activities of daily living (essential tasks that allow a person to live independently), physical functioning, emotional wellbeing, social functioning, cognitive functioning, work/school, sleep, and finances. The model shows that MOGAD has many different symptoms and that the disease can impact many aspects of patients’ lives. The conceptual model and study findings can inform future clinical trials to ensure that symptoms most important to patients are addressed by treatments.
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      headline:Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease: Qualitative Patient and Clinician Interviews Informing the Development of a Conceptual Model
      description:Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune demyelinating central nervous system disease. Currently, little is known about the signs, symptoms, and health-related quality of life (HRQoL) impact of MOGAD from the patient perspective. This study explored the patient experience of MOGAD through concept elicitation interviews with patients with MOGAD and clinicians to develop a conceptual model of MOGAD. A preliminary conceptual model of MOGAD signs, symptoms, treatments, and HRQoL impacts was developed based on a review of the published literature. Thematic analysis of semi-structured interviews with patients and clinicians was used to develop the final conceptual model. Twelve patients with MOGAD and two clinicians were interviewed. The most common patient-reported symptoms were eye pain, fatigue, body aches/pain, headaches, and blurred vision. Eye pain and body aches/pain were reported as the most bothersome symptoms and most important to improve with treatment. The HRQoL impacts most commonly reported by patients were difficulty with carrying out household chores, inability to work, depression, and difficulty walking. Impacts on work/school were considered by patients as the most bothersome to their HRQoL and the most important to resolve. Following the interviews, a final conceptual model was produced that reported 32 symptoms across seven domains (constitutional; visual; general neurological; sensory-motor neurological; genitourinary; gastrointestinal; and chest-related, respiratory, and throat) and 50 HRQoL impacts across eight domains (emotional wellbeing, activities of daily living, physical functioning, social functioning, work/school, cognitive functioning, sleep, and financial). This study provides important insights into the patient experience of MOGAD from patient and clinician perspectives, highlighting the underappreciated burden of the disease. The final conceptual model demonstrates the heterogeneity of MOGAD symptoms and their impact on patients’ HRQoL. Future treatment trials should consider including appropriate measures to evaluate the key symptoms and HRQoL impacts identified in this study. Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune disease in which the immune system attacks the fatty substance that protects nerves in the central nervous system. MOGAD shares overlapping similarities with multiple sclerosis and neuromyelitis optica spectrum disorder. MOGAD has recently been recognized as a distinct disease, and studies exploring the patient experience of MOGAD are limited. This study was conducted to better understand the symptoms of MOGAD and how MOGAD affects quality of life (impacts). We collected information from published studies and patient blogs and conducted interviews with patients and doctors who treat MOGAD. This information was used to develop a visual representation of the patient experience called a ‘conceptual model,’ which includes information about specific symptoms and impacts. The conceptual model includes 32 symptoms and 50 impacts of MOGAD. MOGAD symptoms were grouped into categories: constitutional (general effect of the disease); visual; neurological (general, affecting the brain, spinal cord or nerves; and sensory-motor, affecting how the brain processes sensory information and controls motor movement); genitourinary (affecting reproductive and urinary systems); gastrointestinal (digestive); and chest-related, respiratory (breathing), and throat. MOGAD was found to impact activities of daily living (essential tasks that allow a person to live independently), physical functioning, emotional wellbeing, social functioning, cognitive functioning, work/school, sleep, and finances. The model shows that MOGAD has many different symptoms and that the disease can impact many aspects of patients’ lives. The conceptual model and study findings can inform future clinical trials to ensure that symptoms most important to patients are addressed by treatments.
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         Qualitative interviews
         Internal Medicine
         Neurology
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               type:PostalAddress
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      affiliation:
            name:UCB
            address:
               name:UCB, Bulle, Switzerland
               type:PostalAddress
            type:Organization
      name:Charlotte Cox
      affiliation:
            name:Adelphi Values
            address:
               name:Adelphi Values, Bollington, UK
               type:PostalAddress
            type:Organization
      name:Megan Mayhew
      affiliation:
            name:Adelphi Values
            address:
               name:Adelphi Values, Bollington, UK
               type:PostalAddress
            type:Organization
      name:Julia Stein
      affiliation:
            name:Adelphi Values
            address:
               name:Adelphi Values, Bollington, UK
               type:PostalAddress
            type:Organization
      name:Teresa Gasalla
      affiliation:
            name:UCB
            address:
               name:UCB, Morrisville, USA
               type:PostalAddress
            type:Organization
      name:Béatrice Tugaut
      affiliation:
            name:UCB
            address:
               name:UCB, Colombes, France
               type:PostalAddress
            type:Organization
      email:[email protected]
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      name:UCB, Bulle, Switzerland
      name:Adelphi Values, Bollington, UK
      name:Adelphi Values, Bollington, UK
      name:Adelphi Values, Bollington, UK
      name:UCB, Morrisville, USA
      name:UCB, Colombes, France

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