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

Sexual dysfunction affects 20–50% of childhood cancer survivors; six oncology providers spent 5 co-design sessions building a screening prototype — none of it tested on patients yet

Journal: JMIR Formative Research | Published: 2026-04-08 | Type: Qualitative co-design / implementation science | PMID: 41950298 Authors: Demedis J et al. (University of Colorado School of Medicine; Fred Hutchinson Cancer Center) Funding/COI: Not listed for either

Summary

This paper documents the co-design process — not the outcomes — of building a sexual dysfunction (SD) screening prototype for adolescent and young adult childhood cancer survivors. Six providers at a single academic children's hospital completed five structured sessions to reach consensus on how a screening tool (the SexFS Brief) would be implemented in their clinic. The product is a workflow blueprint: who screens, how often, and what happens when a patient screens positive. No patients were screened under this protocol during this study.

Claims

• Sexual dysfunction affects approximately 20–50% of childhood cancer survivors (cited as background, not an original finding of this study)
• Six providers (physicians, advanced practice providers, nurses) across liquid tumor, solid tumor, and neuro-oncology subspecialties reached consensus across five co-design sessions held December 2021–February 2022
• Consensus decisions included: screening patients aged >15, maximum frequency of every 3 months, electronic health record-based tablet administration in exam rooms, and a dedicated sexual health team of 3–4 providers per subspecialty rather than a single designated individual
• One missed session was handled by individual follow-up meetings with the absent participant
• Each participant received a $100 gift card for participation

Study Quality

This is a formative, qualitative co-design study — which is the methodologically correct approach at this stage of intervention development. The point is not to measure effectiveness but to produce a feasible prototype before investing in a trial. Rapid qualitative analysis was used to synthesize session findings, and the study follows StaRI (Standards for Reporting Implementation Studies) guidelines. That's appropriate scaffolding.

The sample is deliberately small (n=6) because co-design requires sustained engagement from the same participants across multiple sessions, not broad representation. The researchers are transparent about this tradeoff. However, six providers at one institution in the western U.S. — serving a patient population described as largely non-Hispanic White with ~45% Medicaid coverage — is a narrow foundation for a prototype intended to be "disseminated."

Red Flags

• No patients participated in co-design sessions; provider preferences drove all design decisions, despite prior "discover phase" patient interviews informing the template
• Single site, single catchment region — generalizability is explicitly deferred but the paper still frames this as a dissemination-ready prototype
• Demographics skew (largely non-Hispanic White, western U.S. academic center) go unaddressed as a limitation on cultural applicability of the screening approach
• Funding source not disclosed; COI not disclosed — atypical for implementation science at an NCI-designated center
• The SexFS Brief, the chosen screening instrument, is mentioned throughout but its own psychometric validity in this population is not discussed
• The study period (Dec 2021–Feb 2022) means this prototype is four years old; no update on whether it was ever piloted

Strengths

• Transparent documentation of the decision-making process, including where the group had to backtrack after interconnected decisions created conflicts
• Grounded in a prior "discover phase" with 25 provider interviews, giving the co-design sessions an evidence base rather than starting from scratch
• Multi-disciplinary team (physicians, APPs, nurses) across three oncology subspecialties improves workflow realism
• StaRI reporting compliance is above-average for implementation science publications
• Honest about the cascade effect of interconnected design decisions — a real methodological hazard that many co-design papers gloss over

Verdict

This paper is exactly what it says it is: a case study of a co-design process, not evidence that the screening approach works. The research design is appropriate for this phase. The problem is the gap between what was built (a prototype for one clinic in 2022) and the implication that it can be disseminated. Before this prototype means anything clinically, it needs a pilot showing it is actually acceptable to patients — including adolescents, a population conspicuously absent from the design sessions — and that positive screens lead to meaningful follow-up. Read it if you're building implementation science methodology; skip it if you want evidence that screening cancer survivors for sexual dysfunction improves their outcomes.