Dados do Trabalho

Título

The communication of the diagnosis of spinal muscular atrophy in endogamous x non-endogamous regions

Resumo

Background: The communication of the diagnosis of a rare, genetic and neurodegenerative disease may leave sequelae in the lives of those involved. Objective: To compare the communication of the diagnosis of spinal muscular atrophy (SMA) in endogamous x non-endogamous regions. Methods: A cross-sectional study obtained by means of a questionnaire containing the Impact of Event Scale–Revised, sent to volunteers with SMA or their families. Results: The sample consisted of 100 volunteers, 83% female, and aged 36.65 (±10,19) years old and homogeneous for the variables of sex, age, color, education, religion and SMA subtype (1,2,3 and 4) between groups. The endogamous regions, despite being economically less favored, showed more satisfaction and inclusion in medical care and health services, with less trauma and signs of post-traumatic stress disorder related to the time of SMA diagnosis. Conclusion: the positive impact of AME communication in endogamous regions resulted in less emotional damage, favoring free and informed decision-making.

Palavras Chave

Endogamy. Communication of the diagnosis. Spinal muscular atrophy.

Área

Doenças Neuromusculares