Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease: Qualitative Patient and Clinician Interviews Informing the Development of a Conceptual Model.
Jeffrey L Bennett, Asha Paireddy, Charlotte Cox, Megan Mayhew, Julia Stein, Teresa Gasalla, Béatrice Tugaut
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引用次数: 0
Abstract
Introduction: 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.
Methods: 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.
Results: 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).
Conclusions: 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.
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Aims and Scope
Neurology and Therapy aims to provide reliable and inclusive, rapid publication for all therapy related research for neurological indications, supporting the timely dissemination of research with a global reach, to help advance scientific discovery and support clinical practice.
Neurology and Therapy is an international, open access, peer reviewed, rapid publication journal dedicated to the publication of high-quality clinical (all phases), observational, real-world and health outcomes research around the discovery, development, and use of neurological and psychiatric therapies, (also covering surgery and devices). Studies relating to diagnosis, pharmacoeconomics, public health, quality of life, and patient care, management, and education are also welcomed.
The journal is of interest to a broad audience of healthcare professionals and publishes original research, reviews, case reports, trial designs, communications and letters. The journal is read by a global audience and receives submissions from all over the world. Neurology and Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of all scientifically and ethically sound research.
Rapid Publication
The journal’s rapid publication timelines aim for a peer review decision within 2 weeks of submission. If an article is accepted, it will be published online 3-4 weeks from acceptance. These rapid timelines are achieved through the combination of a dedicated in-house editorial team, who closely manage article workflow, and an extensive Editorial and Advisory Board who assist with rapid peer review. This allows the journal to support the rapid dissemination of research, whilst still providing robust peer review. Combined with the journal’s open access model, this allows for the rapid and efficient communication of the latest research and reviews to support scientific discovery and clinical practice.
Open Access
All articles published by Neurology and Therapy are open access.
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The journal’s dedicated in-house editorial team offer a personal “concierge service” meaning that authors will always have a personal point of contact able to update them on the status of their manuscript. The editorial team check all manuscripts to ensure that articles conform to the most recent COPE and ICMJE publishing guidelines. This supports the publication of ethically sound and transparent research. We also encourage pre-submission enquiries and are always happy to provide a confidential assessment of manuscripts.
Digital Features and Plain Language Summaries
Neurology and Therapy offers a range of additional features designed to increase the visibility, readership and educational value of the journal’s content. Each article is accompanied by key summary points, giving a time-efficient overview of the content to a wide readership. Articles may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand the scientific content and overall implications of the article. The journal also provides the option to include various types of digital features including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations. All additional features are peer reviewed to the same high standard as the article itself. If you consider that your paper would benefit from the inclusion of a digital feature, please let us know. Our editorial team are able to create high-quality slide decks and infographics in-house, and video abstracts through our partner Research Square, and would be happy to assist in any way we can. For further information about digital features, please contact the journal editor (see ‘Contact the Journal’ for email address), and see the ‘Guidelines for digital features and plain language summaries’ document under ‘Submission guidelines’.
For examples of digital features please visit our showcase page https://springerhealthcare.com/expertise/publishing-digital-features/
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Upon acceptance of an article, authors will be required to pay the mandatory Rapid Service Fee of €5250/$6000/£4300. The journal will consider fee discounts and waivers for developing countries and this is decided on a case-by-case basis.
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Upon submission, manuscripts are assessed by the editorial team to ensure they fit within the aims and scope of the journal and are also checked for plagiarism. All suitable submissions are then subject to a comprehensive single-blind peer review. Reviewers are selected based on their relevant expertise and publication history in the subject area. The journal has an extensive pool of editorial and advisory board members who have been selected to assist with peer review based on the afore-mentioned criteria.
At least two extensive reviews are required to make the editorial decision, with the exception of some article types such as Commentaries, Editorials and Letters which are generally reviewed by one member of the Editorial Board. Where reviews conflict, an Editorial Board Member will be contacted for further advice and a presiding decision. Manuscripts are then either accepted, rejected or authors are required to make major or minor revisions (both reviewer comments and editorial comments may need to be addressed. Once a revised manuscript is re-submitted, it is assessed along with the responses to reviewer comments and if it has been adequately revised, it will be accepted for publication. Accepted manuscripts are then copyedited and typeset by the production team before online publication. Appeals against decisions following peer review are considered on a case-by-case basis and should be sent to the journal editor, and authors are welcome to make rebuttals against individual reviewer comments, if appropriate.
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