Take on transplant: human-centered design of a patient education tool to facilitate informed discussions about lung transplant among people with cystic fibrosis

Abstract

Objective Lung transplant (LTx) saves lives in cystic fibrosis (CF). However, many potential candidates express uncertainty about LTx and die before receiving this treatment. CF guidelines recommend LTx education and clinical discussions well before the need for LTx arises, but limited patient resources exist. Materials and Methods We engaged people with CF and CF physicians in human-centered design of “Take On Transplant” (TOT), a web-based education tool to prepare patients for LTx discussions. Across 3 phases, needs assessment, design groups, and iterative user testing of TOT, we refined TOT from wireframe prototypes, to an interactive website, to a fully functional intervention ready for clinical trials. Results Fifty-five people with CF and 105 physicians identified information needs to prepare for LTx discussions. Design groups (n = 14 participants) then established core requirements: didactic education (“Resource Library”), patient narratives (“CF Stories”), frequently asked questions (“FAQ”), and self-assessment to tailor content (“My CF Stage”). Iterative usability testing (n = 39) optimized the design of CF Stories and prototype layout. We then developed the TOT website and demonstrated feasibility and preliminary efficacy of use through 2-week field testing (n = 9). Discussion Our human-centered design process provided guidance for educational tools to serve the evolving needs of potential LTx candidates. Our findings support the process of patient deliberation as a foundation for shared decision-making in CF, and inform educational tools that could potentially translate beyond LTx. Conclusion TOT fills a critical gap in preparing people with CF for shared decision-making about LTx and may serve as a model for educational tools for other preference-sensitive decisions.

Attitudes toward and preparedness for lung transplantation among individuals with cystic fibrosis in the era of highly effective modulators

“…These situations highlight a special need in certain subpopulations where early planning may be advantageous, not only for financial and caregiver preparation, but also where directed education may be useful. Three LTx decision-support tools in CF have been described with one shown to reduce decisional conflict [ 20 – 22 ], but no applicable tool is publicly available in the HEMT era. A majority of our respondents felt that an online decision-support tool would be useful, and this may represent an opportunity to provide support and education to people with CF in a usable format.…”