SUN-095 Understanding and Communication Around DSD According to the Mothers and Patients’ Perspectives

Abstract

Communication around DSD is complex. It involves diagnosis and treatment aspects and is influenced by the psychological status of the individuals and the cultural context. An adequate understanding by patients and relatives is essential for approach of DSD. Objetive: To evaluate the DSD care setting in three Brazilian tertiary centers in order to identify the barriers to an adequate understanding and an optimal communication. Methods: A guide with 69 questions, assessing the level of knowledge, the main doubts and difficulties around DSD was developed and guided individual interviews with 100 mothers and 53 adult patients with DSD. The main doubts were clarified and a self-assessment was requested to them before and after the interview on a scale from 0 to 10. Results: Mothers and patients mean age were, respectevily, 35.2 and 36.5 years. Both of them had a satisfactory educational level. Although 48% (p<0.01) of mothers and 68% (p:0.02) of patients were satisfied/very satisfied about their knowledge related to the DSD, 78% and 58%, respectively, of them still had doubts. The doubts were related to diagnosis, karyotype, medications, appearance of genitalia, surgery, sexual activity, fertility, genetic counseling, consequences of the condition and treatment on general health and condition influence on the child’s behavior and personality The unsatisfied mothers cited as barriers to an optimal understanding the complexity of the conditions, the difficult terms and the psychological stress at diagnosis. Patients also cited as barriers the absence of dialogue about the condition at home and some of them chose not to know. About 55% of mothers and 62% of patients didn’t even know the name of the condition; but positively 88% of them knew the necessary treatment. Regarding communication, 68% of mothers and 89% of patients didn’t feel comfortable talking to people about the DSD condition and around 68% of them underwent negative comments. Although 73% of patients would prefer to be first informed about their condition at childhood, 29% of mothers think that childhood is the best age for it. Among mothers and patients, the most and least appropriate term to name the DSD condition is, respectively, genital malformation and disease (p<0.01). Both of them have the stigma as the main concern. Conclusion: Even in a tertiary center with a multidisciplinary team, the mothers and patient’s knowledge about DSD conditions is scarce. The proper choice of the term to refer to DSD conditions should consider the families and patients perspectives. Communication about DSD is prejudiced by the lack of knowledge and the stigma suffered by these patients and families. Thus, due to complexity of this topic, continued educational action must be instituted as a strategy to modify this scenario.