Provider-Engaged Development of a Sexual Dysfunction Screening Approach for Adolescents and Young Adult Childhood Cancer Survivors: Iterative Co-Design Study

Abstract Background Sexual dysfunction (SD) is common among childhood cancer survivors, affecting approximately 20% to 50% of patients. National guidelines recommend discussions about sexuality throughout cancer care, and prior work demonstrates patient interest in SD conversations. Despite its prevalence and importance, SD is widely underrecognized and undertreated, creating gaps in comprehensive whole-person care. Objective Our research aims to collaborate with provider partners to co-design an SD screening intervention prototype for implementation in a clinical oncology setting. This study outlines the co-design process to serve as a case study, highlighting challenges and strategies to achieve a consensus-driven intervention and implementation plan. Methods We engaged pediatric cancer providers in a series of co-design sessions at a National Cancer Institute–designated cancer center within an academic children’s hospital. For each co-design session, the research team created a template outlining considerations from formative work (eg, patient privacy) and key decisions to be made (eg, screening modality). Co-design session moderators facilitated discussion, guiding participants toward a consensus decision for each intervention component. A final process mapping session reviewed and outlined the entire SD prototype. We conducted a rapid qualitative analysis, compiling a templated summary synthesizing and organizing findings by discussion topic and decision point. Based on co-design discussions, the research team compiled a menu of options outlining key thematic findings, core screening intervention functions, and intervention form options to allow for future expansion and tailoring of the SD prototype. Results Six provider participants, including attending physicians, advanced practice providers, and registered nurses representing multiple oncology subspecialty groups, engaged in a series of 5 co-design sessions. Participants assessed specific intervention component options, reached consensus on component decisions, and determined an intervention and implementation workflow for each. Throughout, providers needed to ensure workflows aligned with patient and provider priorities from foundational work and to ensure design feasibility, acceptability, and appropriateness. Key intervention and implementation decisions included target population, screening frequency, screening modality and workflow, management of screening results, clinic reminders and cues, and provider education and training. With several decisions being interconnected, there was often a cascade effect in which one decision influenced or limited future decisions and, in some cases, required revisiting prior decisions to ensure cohesive alignment into a single prototype. Co-design session moderators used several strategies (eg, reminders, redirection, providing information on feasibility, etc) to facilitate decision-making and implementation strategy selection. Conclusions Engaging provider partners in co-design sessions allowed for the collaborative development of a preliminary SD screening approach for adolescents and young adults with and surviving cancer. The dynamic co-design process and moderator strategies ensured that intervention and implementation decisions reflected the patient and provider priorities identified in prior work. Future work will test, adapt, and refine the prototype SD screening approach prior to effectiveness testing and eventual dissemination.