UCSF

Purpose

We describe the lived experience of adults with acquired buried penis (AABP) through thematic analysis of patient interviews. We examine the challenges that patients face and the impacts of surgery.

Materials and methods

This mixed-methods study utilized validated instruments and semi-structured interviews to capture pre- and postsurgical outcomes. Semi-structured interviews were conducted with open-ended questions to elicit the impact of AABP on a patient's quality of life in several domains including urinary function, sexual function, interpersonal relationships and mental health. Recruitment was completed once we achieved thematic saturation.

Results

Twenty patients participated in the study; 11 underwent surgical treatment for AABP. Semi-structured interviewee responses were coded into 12 different themes and 39 subthemes. The most common themes were problems with urinary (19/20, 95%) and sexual function (19/20, 95%). Most participants (16/20, 80%) reported negative impacts of AABP on social life. Interviewees struggled with relationships (8/20, 40%) and mental health (11/20, 55%), often avoiding romantic relationships and reporting fear of rejection with concomitant depression and/or anxiety. The majority (70%, 14/20) experienced difficulties accessing care. Among patients who underwent surgery, the majority discussed improvement in urinary and sexual function (82% [9/11] and 73% [8/11], respectively). Though weight gain was a precipitating factor, weight loss did not result in symptom improvement. Rather, in 4/20 (20%), weight loss made their condition worse.

Conclusions

Patients living with AABP experience profound negative impacts on quality of life including their urinary and sexual function, social life and mental health. Many patients face issues with access to care.