Community Engagement of Stakeholders in the Development of a Patient-Centered Outcomes Tool for Adolescents with a History of Hypospadias Repair
Janet Panoch, MA, Sarah Wiehe, MD, Mark P. Cain, MD, Aaron Carroll, MD, MS, Katherine H. Chan, MD, MPH.
Indiana University School of Medicine, Indianapolis, IN, USA.
BACKGROUND: Hypospadias, a urethral opening on the underside of the penis, may lead to long-term issues with urination, sexual function and psychosocial well-being. There are limited data regarding the long-term patient-centered outcomes of hypospadias repair. The purpose of this qualitative study was to engage community stakeholders (i.e., normal adolescents) in the development of a long-term patient-centered outcomes tool for patients with a history of hypospadias repair. METHODS: We developed a self-reported toolkit for adolescent patients who had hypospadias repair as children. The toolkit featured short writing exercises, fill-in-the blank diagrams, and reflections about genital appearance, urination, sexual function and psychosocial well-being. We recruited students from a suburban and an urban high school respectively for two focus groups (n=33) to obtain feedback about the usability/acceptability of the toolkit’s appearance and content. We inquired about language preferences for discussing urinary and sexual issues and preferred format and/or setting for sharing sensitive information with researchers. The focus groups were audio recorded, professionally transcribed and analyzed using a phenomenologic approach (describing the experience of being an adolescent/young adult participating in a research study). Participants’ responses were de-identified.
RESULTS: We conducted two focus groups in January 2018 with 33 participants, ages 14-18. Participants preferred language that would make patients feel comfortable and serious, clinical language rather than slang terms or sexual humor. They recommended avoidance of statements implying that something is wrong with a patient or statements that would pressure the patient into providing answers. They suggested fill-in-the-blank and open-ended responses to encourage freedom of expression and colorful graphics to de-emphasize the test-like appearance of the journal. Most participants preferred a journal format to a one-on-one interview to discuss sensitive topics such as urinary or sexual issues. Participants either would prefer a male interviewer or would like to have a choice of interviewer gender for individual qualitative interviews. Participants suggested that a focus group leader with a history of hypospadias repair would have a deeper understanding of the patient experience in future focus groups. CONCLUSIONS: Participants preferred a journal format with colorful graphics, clinical, non-judgmental language and open-ended responses to encourage reporting of sensitive urinary, sexual and psychosocial issues. We used focus group feedback on the journal prototype to refine the tool for use in a future study of adolescents and young adults with history of hypospadias repair.
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