Before adolescence, youths with type 1 diabetes showed only slight problems in psychological adjustment and QoL, with an association with disease duration reported by parents. In adolescence, both youths and their parents reported more emotional and behavioural problems, independent of disease duration. Better metabolic control and psychological well-being seemed directly related.

Background Progressive care improvement for differences of sex development (DSD), regarding diagnosis communication, psychological, medical and surgical management has been claimed. Aim of the study To assess clinical management, quality of life (QoL) and the general psychosocial adjustment of individuals with 46,XY DSD. Some differences related to age at diagnosis are investigated. Design Cross-sectional study using standardized questionnaires. Population Forty-three Caucasian females with 46,XY DSD (self declared diagnoses: complete androgen insensitivity syndrome, n = 34; complete gonadal dysgenesis, n = 1; 5α-reductase deficiency, n = 4; Leydig cell hypoplasia, n = 1; unknown diagnosis, n = 3; age years: 31.5 ± 9.6 [range 18–57 years]). Setting University Hospitals. Methods Subjects were required to fill in questionnaires (ABCL, WHOQOL, dedicated 17-item questionnaire). Academic and socioeconomic data were compared with those of the Italian population. QoL and psychological data were compared with those of a comparison group (46,XX healthy females: n = 43; age, years: 34.5 ± 9.7, range 22–51years). Results Present sample of women living with 46,XY DSD were well adapted and were higher achievers than controls, both in educational and professional life. They showed good QoL, but they appeared less satisfied in psychological and social areas. They had borderline mean scores and statistically higher scores than the comparison group for depression, anxiety, internalizing and externalizing problems. Younger persons living with a 46,XY DSD showed better psychosocial adjustment than older ones. Younger women showed lower age at diagnosis communication. Psychological support was more often proposed at the time of diagnosis communication to younger individuals, and they undertook it more frequently than older ones. Conclusions Italian people living with 46,XY DSD were well adapted and successful; they reported a good QoL but showed higher degree of psychological distress than the comparison group. Lower psychological distress in younger women could indicate some positive effects of changes in management.

Intersex/disorders of sex development advocacy groups and associated health care professionals question the legitimacy of the Council of Europe issue paper, express their worries about its potentially harmful consequences, and urge the Council of Europe to consult more widely with relevant stakeholders.

This paper focuses on the importance of full disclosure in disorders of sex development (DSD), as a universal human right and closely related to informed consent. Full disclosure is not only a way of communicating a diagnosis, it is a methodological constant that permeates all the clinical moments expressed by a multidisciplinary team. As stated by The Chicago consensus, DSD should be referred to specialized centers of excellence. In these centers provided with the necessary multidisciplinary team that is able to: provide knowledge, skills and experience; deliver quality and care, and cope with the emotional barriers that often hinder the practice of full disclosure. Full disclosure is important when a person is informed about something, can participate in making a decision or is advised about something that needs to be done before he/she will be able to make a choice. However, if a person is informed about something that was done unnecessarily and could have been postponed until he/she could have been involved in making the decision, full disclosure can be seen as deception colored by rage, sorrow and regret.