The moment of communicating the diagnosis of neuromuscular diseases: an integrative review

Abstract

Background: The communication of diagnosis of neuromuscular genetic diseases is a very important moment, because if there is a lack of understanding about the disease, it can limit decision-making, compromising freedom and autonomy of the patients, with several repercussions, such as tendency towards more aggressive therapies in detriment of ensuring better quality of life. Methods: The guiding question was: did the moment of communicating the diagnosis of neuromuscular diseases value the ethical principles of beneficence, non-maleficence and autonomy? So it was carried out a integrative review with the search for original research articles in the portals Pubmed, Bireme and Scopus between November 2020 and March 2021, whose descriptors were (“Muscular Diseases" OR "Neuromuscular Diseases") AND "Truth Disclosure".Results: Only one article was found, published in 1983, which had as object of study the diagnosis of Duchenne Muscular Dystrophy. In this study, most patients received the diagnosis without the support of a family member, the time elapsed until the diagnosis was variable, with greater satisfaction for those who had their diagnosis more quickly. Another relevant factor in satisfaction was the scheduling of a return visit to answer questions and discuss the disease management.Conclusions: The present studies deal with clinical observations, screening methods, complementary exams and treatments, but little is discussed about the communication of the diagnosis and how this moment impacts on the lives of the patients. Thus, the ethical principles of non-maleficence, beneficence and autonomy must also be applied when diagnosing these diseases, in order to ensure a better doctor-patient relationship and better follow-up of the disease.