SynthesisInternational journal of environmental research and public health2022
EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases.
Synthesis in International journal of environmental research and public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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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.
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.
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Who cites it
4 citing papers in PubMed, 9 citations in OpenAlex.
- The disclosure of a diagnosis of neuromuscular disease in adulthood: a qualitative study of patients' memories.Journal of community genetics · 2026Article
- Communicating the diagnosis of spinal muscular atrophy in endogamous vs. non-endogamous regions.BMC neurology · 2024Article
- Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative-Qualitative Study.Behavioral sciences (Basel, Switzerland) · 2023Article
- Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis.International journal of environmental research and public health · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionNeuromuscular diseases comprise a heterogeneous group of genetic syndromes that lead to progressive muscle weakness, resulting in functional limitation. There is a gap in the literature regarding the communication of the diagnosis of such diseases, compromising the autonomy of patients and families, besides causing stress on the assistant physician.
objectivesDeveloping a guide to reduce communication barriers in the diagnosis of neuromuscular diseases. METHODOLOGY: Systematic review, after searching the descriptors ("Muscular Diseases" OR "Neuromuscular Diseases") AND ("Truth Disclosure" OR "Bad news communication" OR "Breaking bad News") in the Pubmed, Bireme, and Scopus websites, and these results were analyzed through narrative textual synthesis.
results16 articles were submitted to the final analysis, giving rise to seven steps to support the communication process. These are Empathy, Message, Prognosis, Reception, Time, Individualization, and Autonomy. DISCUSSION AND
conclusionThe empathic transmission of the message and the prognosis must accommodate the feelings of the interlocutors with different information needs. In this way, communication planning optimizes the time and individualizes each context, respecting the autonomy of those involved. EMPATIA reflects the bioethical and interdisciplinary analysis of the literature and comes to fill the gap related to the communication of bad news in neuromuscular diseases.
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What OpenQuestion holds
Registered trials
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.