A qualitative study of patient and family experiences in adolescents with varicoceles: A focus on fertility, self-esteem, and sexual function.

Abstract

Background: A varicocele is an abnormal dilation of the pampiniform plexus of veins in the scrotum that commonly affects postpubertal males. The condition has been associated with male infertility, testicular hypotrophy, and pain. However, the clinical experiences of adolescent patients and their families regarding the evaluation, surveillance, and management of varicoceles have not been previously examined.

Objective: This study explores the patient's and family's experiences of varicocele diagnosis and subsequent management to better understand the salient factors impacting decision-making and care.

Methods: We conducted semi-structured interviews with patients and their families between August 2022 and January 2023. A total of 39 participants (16 adolescent males and 23 parents) were recruited following varicocele diagnosis and treatment at an urban, tertiary care hospital in California. Purposive sampling was adopted for the recruitment of participants through medical record screening to identify eligibility. Utilizing a modified grounded theory approach through the use of constant comparison and memo writing, the analysis consisted of open coding, axial coding, and selective coding, resulting in the production of core concepts and categories.

Results: Results demonstrate that parents and adolescents can benefit from improved understanding and education about long-term expectations during the diagnosis and treatment of adolescent varicoceles. Qualitative analysis indicates: 1) parents and adolescents have common concerns regarding fertility; however, this is exacerbated by the complexity of medical decision-making being dependent on adolescent and parental understanding of the full scope of varicocele impacts and outcomes, and 2) the psychosocial impact of a varicocele on adolescent self-esteem and sexual function are significant drivers for seeking care, which often manifested through discussions on masculinity through notions of 'manhood' and future sexual performance.

Discussion: Discussions with patients and families largely focused on their concerns regarding fertility, sexual function, and aesthetics (impacting self-esteem); however, their primary concern was for the need for more accurate and comprehensive information, which includes the natural history of the condition and the full scope of treatment options. Future studies should examine the experiences of patients and families from diverse backgrounds and geographic locations to identify potential differences in experiences.

Conclusion: Findings identified the need for potential improvement in communication between pediatric urologists and families to alleviate anxiety and uncertainty among patients and families and empower them to make informed decisions about their care.