BACKGROUND: Although hypospadias is the most common malformation of the penis, this condition is virtually unknown to the general population. This lack of information may lead to psychological distress to both parents and patients. In this study the content of an Internet-based hypospadias support group is analyzed. MATERIALS AND METHODS: All comments and postings made by members of an online support group between 2001 and 2008 were analyzed. No personalized data were used for evaluation. RESULTS: At the end of 2008, the group consisted of 535 members. In the study period, 3050 postings were published. Major issues discussed in the group were (a) medical questions, exchange of medical knowledge, experience, and history; (b) psychological, ethical, and philosophical aspects; (c) practical questions and recommendations; (d) recommendations for surgeons; and (e) hypospadias in adults. CONCLUSIONS: Online hypospadias support groups play an important role in how parents and patients cope with the condition. Surgeons dealing with hypospadias should be aware of the importance of Internet-based information in the field of hypospadias. They may benefit from the valuable feedback information from patients and parents to improve their practice and outcome.
BACKGROUND: Although hypospadias is the most common malformation of the penis, this condition is virtually unknown to the general population. This lack of information may lead to psychological distress to both parents and patients. In this study the content of an Internet-based hypospadias support group is analyzed. MATERIALS AND METHODS: All comments and postings made by members of an online support group between 2001 and 2008 were analyzed. No personalized data were used for evaluation. RESULTS: At the end of 2008, the group consisted of 535 members. In the study period, 3050 postings were published. Major issues discussed in the group were (a) medical questions, exchange of medical knowledge, experience, and history; (b) psychological, ethical, and philosophical aspects; (c) practical questions and recommendations; (d) recommendations for surgeons; and (e) hypospadias in adults. CONCLUSIONS: Online hypospadias support groups play an important role in how parents and patients cope with the condition. Surgeons dealing with hypospadias should be aware of the importance of Internet-based information in the field of hypospadias. They may benefit from the valuable feedback information from patients and parents to improve their practice and outcome.
Authors: Martijn D F Rhebergen; Annet F Lenderink; Frank J H van Dijk; Carel T J Hulshof Journal: BMC Med Inform Decis Mak Date: 2011-11-23 Impact factor: 2.796