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- W2014006970 abstract "Purpose The national study Disorder of sex development (DSD) investigates the satisfaction of women with the current directives, protocols and treatment. Special schooling and involvement by the investigators is necessary because of the sensitive nature of this subject. Support for these women by the pediatric urology nurse practitioner (NP) during the study is a new experience for both the participants and the NP. Material and Methods In the study we started with the women and later we will approach the men. The NP coordinates the study, approaches candidates in cooperation with the endocrinologist, sends questionnaires, interviews and supports candidates at the gynaecological examination and collects blood samples. Results All women (33 participated) find participation in the study a psychological and physical burden. With the NP acting as a professional confidant, the participants became more relaxed and found it less difficult to talk about their life with DSD. They all missed continuity in the given healthcare, and experienced that there was only time for medical affairs and no time for the impact of the disease on their lives. The NP plays an important role in the study, they ensure that there is an optimal climate for the candidates and that has positive effects on their wellbeing. The NP's are aware that these women need special care, for that reason they follow special education. Conclusions DSD patients need a professional confidant who plays a key role in taking care of the continuity in the lifelong multidisciplinary care at the in- and out patient clinic." @default.
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- W2014006970 date "2010-04-01" @default.
- W2014006970 modified "2023-09-25" @default.
- W2014006970 title "The Role of the Nurse Practitioner in the Disorder of Sex Development Study" @default.
- W2014006970 doi "https://doi.org/10.1016/j.jpurol.2010.02.201" @default.
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