Evidence map›Paper›PMID 40372604›Full record

ArticleNeurology and therapy2025

What Patients Don't Say and Physicians Don't Ask: A Needs Assessment in Myasthenia Gravis Integrating Patient and Healthcare Professional Perspectives.

Cornelia Reyes Acosta, Ivo Vlaev, Alexis Rodriguez, Allison Foss, Ashwin Pinto, Channa Hewamadduma, John Vissing, Nicholas J Silvestri, Sophie Lehnerer, Marc De Backer and 3 more

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Article in Neurology and therapy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Cornelia Reyes AcostaLLH Concepts GbR, Eggentalerstrasse 5, 85778, Haimhausen, Germany. reyes.cornelia@gmail.com.ORCID http://orcid.org/0000-0002-4079-5560
Ivo VlaevWarwick Business School, University of Warwick, Coventry, UK.
Alexis RodriguezMG Georgia, Atlanta, GA, USA.
Allison FossMyasthenia Gravis Association (MGA), Kansas City, MO, USA.
Ashwin PintoDivision of Clinical Neuroscience, University of Southampton, Southampton, UK.
Channa HewamaddumaAcademic Neuromuscular Unit, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
John VissingCopenhagen Neuromuscular Center, Department of Neurology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
Nicholas J SilvestriDepartment of Neurology, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA.
Sophie LehnererDepartment of Neurology with Experimental Neurology, Charité - Universitätsmedizin Berlin, Berlin, Germany.
Marc De BackerUCB, Brussels, Belgium.
Natasha MoninUCB, Malvern, Australia.
Sophie BarryUCB, Dublin, Ireland.
Ina WeisshardtLLH Concepts GbR, Eggentalerstrasse 5, 85778, Haimhausen, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionMyasthenia gravis (MG) is a rare, autoimmune neuromuscular disease characterized by unpredictable fluctuating muscle weakness. This unpredictability makes effective patient-healthcare professional (HCP) dialogue essential for optimal diagnosis and management, with communication as a key component of shared decision-making (SDM). We designed a needs assessment to understand the differences between HCP and patient communication needs and perspectives on the impact of MG.

methodsA mixed-methods approach was utilized, comprising a survey and semi-structured interviews with HCPs and patients with MG. Quantitative data from the survey were extracted and analyzed to understand trends of knowledge, skills, and attitudes toward patient-HCP dialogue and SDM in MG. Interviews were transcribed and analyzed using principles of thematic analysis to identify perspectives on the impact of MG and challenges in communication.

resultsCompleted survey data were collected from 47 HCPs and 122 patients. There were discrepancies and areas of alignment in the priorities each group placed on knowledge, skills, and attitudes in MG management. Patients valued HCPs' listening skills and knowledge of treatment history, whereas HCPs prioritized knowing what matters to a patient with MG, including providing support to the patient and their family/carer. Both groups agreed on the necessity of a compassionate and informed approach to care. Interviews (10 HCPs; 10 patients) revealed key themes, including the multifaceted way in which symptoms impact patients' lives and challenges patients face while communicating their experiences.

conclusionThis needs assessment indicated general alignment between patients and HCPs on MG symptoms; however, notable disparities were found in relation to the perceived impact of these symptoms on patients' lives, and communication. While some HCPs expected patients to volunteer information on symptoms and MG-related challenges, patients expected their HCPs to ask. This highlights a need for improved communication strategies, which will foster SDM approaches.

Indexed as

Behavioral analyticsCollaborative researchImmersive learning experienceMyasthenia gravis (MG)Needs assessmentPatient engagementPatient perspectivePatient–physician communicationShared decision-making (SDM)

Identifiers

PMID40372604
PMCPMC12255620

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.