JMIR Publications

ABSTRACT

Background:

Sexual dysfunction (SD) is common among childhood cancer survivors, affecting approximately 20-50% of patients. Despite its prevalence and importance, SD is widely underrecognized and undertreated, creating gaps in comprehensive whole-person care.

Objective:

Our research aims to work alongside provider partners to co-design a SD screening intervention prototype for implementation in a clinical oncology setting. This manuscript details the co-design process to serve as a case study, highlighting challenges and strategies to arrive at 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 (e.g. patient privacy) and key decisions to be made (e.g. screening modality). Co-design session moderators facilitated discussion, guiding participants towards a consensus decision for each intervention component. A final process mapping session reviewed and outlined the entire SD prototype. 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 five co-design sessions. 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, some intervention components required revisiting to ensure cohesive alignment into a single prototype. Co-design session moderators used several strategies (e.g., reminders, redirection, providing information on feasibility, etc.) to facilitate decision-making and implementation strategy selection.

Conclusions:

Engaging provider partners in co-design sessions established an acceptable, feasible, scalable, and sustainable standardized SD screening approach to address current gaps in patient care. The dynamic co-design process and moderator strategies addressed participants’ decisional needs and ensured decisions reflected the patient and provider priorities identified from prior work. Future work will test, adapt, and refine the prototype SD screening approach prior to effectiveness testing and eventual dissemination.