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OBJECTIVE To identify problems in the long‐term psychosocial and developmental outcome specific to patients with the bladder exstrophy‐epispadias complex (BEEC), using a self‐developed semi‐structured questionnaire, as there are various techniques of reconstruction to repair BEEC but to date neither patients nor surgeons have a clear answer about which type gives the most acceptable long‐term results. PATIENTS AND METHODS Increasingly many patients with BEEC reach adulthood and wish to have sexual relationships and families. To date, no studies have used disease‐specific psychological instruments to measure the psychosocial status of patients with BEEC. Thus we contacted 208 patients with BEEC, and 122 were enrolled, covering the complete spectrum of the BEEC. The data assessed included the surgical reconstruction, subjective assessment of continence, developmental milestones, school performance and career, overall satisfaction in life, disease‐specific fears and partnership experiences in patients aged >18 years. We compared affected females and males to assess gender‐associated differences in quality of life. RESULTS Affected females had more close friendships, fewer disadvantages in relation to healthy female peers and more partnerships than the males. Family planning seemed to be less of a problem in affected females. There were no gender differences in the adjustments within school and professional career, which was very good in general. CONCLUSION Future studies are needed to assess the disease‐specific anxieties, considering gender‐specific differences.

The US Health Resources and Services Administration defines telehealth as the use of electronic information and telecommunications technologies to support long-distance clinical healthcare, patient and professional health-related education, public health and health administration. Many studies have supported the use of telehealth to increase convenience to patients, improve patient satisfaction, diminish healthcare disparities, and reduce cost that will ultimately lead to improvement in clinical outcomes and quality of care. However, guaranteeing confidentiality, educating patients and providers, and obtaining insurance reimbursement are some of the challenges that face the implementation of telehealth program. The use of telehealth has been investigated in acute infections, such as endocarditis and chronic infections as in hepatitis C, and HIV. The purpose of this review is to focus on the use of telehealth services for people living with HIV (PLWH). For PLWH, telehealth could be particularly useful by connecting specialty providers to an underserved population and addressing many of the factors identified as barriers to HIV care. To date, the literature supports the use of telehealth for the management of chronic diseases including HIV. Most of the studies showed a high acceptability and positive experience with telehealth services among PLWH. However, fewer studies have evaluated telemedicine for chronic direct care of PLWH. Well-designed studies are needed to show that the implementation of telehealth could improve the HIV care continuum. In addition, future research should focus on identifying the group of patients that could benefit the most from such intervention.

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