Understanding Pediatric Experiences With Symptomatic Varicoceles: Mixed Methods Study of an Online Varicocele Community

Abstract

Background: Varicoceles affect up to 30% of postpubertal adolescent males. Studying this population remains difficult due to this topic's sensitive nature. Using the popularity of social media in this cohort and natural language processing (NLP) techniques, our aim was to identify perceptions of adolescent males on an internet varicocele forum to inform how physicians may better evaluate and counsel this pediatric population.

Objective: We aimed to characterize themes of discussion and specific concerns expressed by adolescents using a mixed methods approach involving quantitative NLP and qualitative annotation of an online varicocele community.

Methods: We extracted posts from the Reddit community "r/varicocele" (5100 members) with criteria of discussant age ≤21 years and word count >20. We used qualitative thematic analysis and the validated constant comparative method, as well as an NLP technique called the meaning extraction method with principal component analysis (MEM/PCA), to identify discussion themes. Two investigators independently interrogated 150 randomly selected posts to further characterize content based on NLP-identified themes and calculated the Kaiser-Meyer-Olkin (KMO) statistic and the Bartlett test. Both quantitative and qualitative approaches were then compared to identify key themes of discussion.

Results: A total of 1103 posts met eligibility criteria from July 2015 to June 2022. Among the 150 randomly selected posts, MEM/PCA and qualitative thematic analysis separately revealed key themes: an overview of varicocele (40/150, 27%), management (29/150, 19%), postprocedural experience (28/150, 19%), seeking community (26/150, 17%) and second opinions after visiting a physician (27/150, 18%). Quantitative analysis also identified "hypogonadism" and "semen analysis" as concerns when discussing their condition. The KMO statistic was >0.60 and the Bartlett test was <0.01, indicating the appropriateness of MEM/PCA. The mean age was 17.5 (SD 2.2; range 14-21) years, and there were trends toward higher-grade (40/45, 89% had a grade of ≥2) and left-sided varicoceles. Urologists were the topic of over 50% (53/82) of discussions among discussants, and varicocelectomy remained the intervention receiving the most interest. A total of 60% (90/150) of discussants described symptomatic varicoceles, with 62 of 90 reporting pain, 24 of 90 reporting hypogonadism symptoms, and 45 of 90 reporting aesthetics as the primary concern.

Conclusions: We applied a mixed methods approach to identify uncensored concerns of adolescents with varicoceles. Both qualitative and quantitative approaches identified that adolescents often turned to social media as an adjunct to doctors' visits and to seek peer support. This population prioritized symptom control, with an emphasis on pain, aesthetics, sexual function, and hypogonadism. These data highlight how each adolescent may approach varicoceles uniquely, informing urologists how to better interface with this pediatric population. Additionally, these data may highlight the key drivers of decision-making when electing for procedural management of varicoceles.

Keywords: adolescents; natural language processing; online forums; online support; peer support.