SUN-241 Understanding and Communication of DSD in Patients' Perspectives

Abstract

Communication in DSD is complex: it involves diagnosis and treatment aspects, psychological status of the pantients and cultural context. An adequate understanding by patients is essential for approach and communication in DSD. Objective: Evaluating the DSD care setting in two tertiary centers in order to identify the barriers to the adequate understanding and optimal communication. Methods: Specific questionnaire (69 questions), assessing the knowledge level, the main doubts and difficulties in DSD communication was developed and applied to DSD patients. The main doubts were clarified and a self assessment was requested for the patients before and after the interview. Results: 40 patients were interviewed. Mean patients age was 36,2y (SD: 13,7) and 54% finished at least hight school. When asked about their condition understanding, although 55% (p: 0,073) of them was satisfied, 62% doesn’t know the condition name, 53% doesn’t know the main condition characteristics and why they’re were affected and 57% still had any doubt. Doubts were related to diagnosis, drugs, surgery, appearance of the genitália, karyotype and fertility. Positevely, 77% (p < 0,01) knows the necessary treatment. The mais barriers to full understandig reported were: scientific terms used in the approach, the complexity of the conditions, the absence of dialogue about the condition at home and patient's choice not to want to know. When asked about how they were informed, 26% of them were informed in infancy, 58% in adolescence and 16% in adulthood (mean age: 14,7y SD: 7,3). 68% of them were informed by doctors. 35,5% (p: 0,01) was insatisfied with the first approach and 79% (p < 0,01) of them would prefer to know early in childhood for better adaptation. They suggested as an ideal approach to avoid omission and difficult terms, to explain gradually, clearly, using visual aids and with psychological support. Concerning communication about DSD in society, 86,5% (p < 0,01) doens’t feel conforttable talking to people about their condition and 58% suffered negative comments in family, school, work and social environment. Only 24% (p:0,064) of them doens’t bother with the judgment of other people. For better communication, among the terms (disease, clinical condition, genitalia malformation, ambiguous genitalia and disorders of sex development), 35% considered genitália malformation as the best for clarity and objectivity, and for 40% of them. disease was the worst for stigma. Their self assessment 1 to 10) improved from 6 before to 9 after the interview (t(38): 7,8, d: 1,52, IC 95%: 2,2-3,69; p< 0,01), with a positive impact on the patients knowledge. Conclsuion: Communication iabout DSD is prejudiced by the stigma and lack of knowledge. The choice of the term to refer to DSD conditions should consider the patient perspectives. Thus continued educational actions must be instituted to modify this scenario.