Community engagement of adolescents in the development of a patient-centered outcome tool for adolescents with a history of hypospadias repair

Extended Summary Introduction Hypospadias may lead to long-term issues with urination, sexual function and psychosocial well-being. Limited evidence exists regarding the healthcare communication preferences of male adolescents regarding sensitive topics. Objective The purpose of this qualitative study was to explore the healthcare communication preferences of male adolescents regarding sensitive topics (e.g. urinary and sexual issues) and engage them in the initial stages of development of a patient-centered outcome tool for adolescents with a history of hypospadias repair. Study design A multidisciplinary team with communication design expertise, pediatric urology experts, and health services researchers developed a self-reported toolkit for adolescent patients who had hypospadias repair as children. The toolkit featured short writing/diagramming exercises and scales to facilitate participant reflections about genital appearance, urination, sexual function, and psychosocial well-being. We recruited students from two local high schools for two focus groups to obtain feedback about the usability/acceptability of the toolkit's appearance/content. We inquired about language preferences and preferred format and/or setting for sharing sensitive information with researchers. The focus groups were audio recorded, professionally transcribed, checked for accuracy, and analyzed by two coders using qualitative content analysis. Major themes and subthemes were identified, and representative quotes were selected. Results We conducted two focus groups in January 2018 with 33 participants, aged 14–18 years. Participants preferred language that would make patients feel comfortable and serious, clinical language rather than slang terms/sexual humor ( Extended Summary Table ). 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 toolkit. Most participants preferred a toolkit format to a one-on-one interview to discuss sensitive topics such as urinary or sexual issues. Participants would prefer either a male interviewer or would like to have a choice of interviewer gender for individual qualitative interviews, and they recommended a focus group leader with a history of hypospadias repair. Discussion This study provides a rich description of a group of male high school students' experiences with healthcare providers and researchers. Its qualitative design limits generalizability, and our findings may not be similar to those of adolescents with a history of hypospadias repair. Conclusion We used focus group feedback on the toolkit prototype to refine the tool for use in a future study of adolescents with a history of hypospadias repair. Summary Table . Themes and representative quotes regarding toolkit appearance/content. Theme/recommendation Representative quote Make it educational ‘I think you guys should add some statistics to the book…like some graphs and stuff like that. That could fill the void.’ (#2) ‘Would it be helpful to have a picture of like hypospadias? Like what it looks like when they're a baby?’ (#2) Avoid ‘test-like’ appearance and content ‘Maybe adding some color would be useful because like, I'm not going to lie, I feel like this looks a lot like a test.’ (#1)” ‘I would change ‘answers’ to ‘responses’ so they think it's not like a test or something. Instead of adding like a picture or illustration of it you could add like a graph or something about the percentage of people with hypospadias in the country.’ (#1) ‘Could you emphasize the fact that you don't have to use up all the lines? It could look really exhausting to a person doing it.’ (#1) Avoid biasing the patient's responses ‘With kind of the imposing diction used, where is says “this can cause problems”…the word choice “problems” makes it seem like you had to get surgery. By using the word “problems” that it’s going to affect you later on. Like maybe a lighter word…that's what I was thinking…issues.’ (#1) Make patients feel comfortable ‘We should emphasize that there is nothing wrong with you for having this surgery and it's completely natural. Maybe that would help them feel like sharing their experience.’ (#1) Avoid pressuring the patient to respond to the questions ‘[It] says, “after we receive your completed journal”, and I think that makes the person more inclined to answer any questions they might not want to just to complete the journal. So, if you just put, “After we receive your responses…”’ (#1) Avoid implying ‘wrongness’ ‘I feel like using the word “correct” [the hypospadias] can make them feel more like an outcast and you can probably change it to “surgery on the condition” to make them feel it's something that could be fixed.’ (#1) Use professional language ‘I think you should use “urination” instead of “peeing”, just because peeing is like something like big kids, like 13 and 14, kind of giggle over something like that. Urination makes it seem a little bit more professional.’ (#1) Be serious, not silly ‘I think it's fine if you're not using medical jargon. It's using words you'd hear every day. But, I don't think it should be like too playful because it is still a serious study. But, if you're saying “Mark Your Territory,” then that might like mislead them. Also the person being studied might not appreciate that there is a little bit of humor in this topic. If he feels a little bit insecure, he might not appreciate, like terms like “Mark Your Territory.”’(#1) Encourage freedom of expression ‘Maybe for the options you could add like a choice where you could write your own. With all these options here, just so you have something else there.’ (#1) Include a variety of emotions ‘I think you should add an emotion describing loneliness to describe when you feel you're dealing with the situation all on your own and you don't really have anyone to talk to.’ (#2) ‘Embarrassment would be a good one to add.’ (#2) Avoid big or excessive words ‘I would just avoid using excessive words. So…I would just put, “If you've ever felt insecure or felt the need to hide your surgery from others, explain why.”’ (#1) ‘Maybe like definitions to some words that people may not know or maybe just cancel them out like I don't know what nonchalant means.’ (#1) ‘I don't feel like [sexual function] is a word people would use but I get the meaning behind it.’ (#2) #1 = first focus group; #2 = second focus group.