Take on Transplant: Human-centered Design of a Patient Education Tool to Facilitate Informed Discussions About Lung Transplant Among People with Cystic Fibrosis

Overview

Journal J Am Med Inform Assoc

Publisher Oxford University Press

Specialty Medical Informatics

Date 2022 Sep 29

PMID 36173364

Authors

Andrea L Hartzler

Lauren E Bartlett

Mara R Hobler

Nick Reid

Joseph B Pryor

Siddhartha G Kapnadak

Donna L Berry

William B Lober

Christopher H Goss

Kathleen J Ramos

Affiliations

Soon will be listed here.

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.

Citing Articles

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

Burdis N, Kapnadak S, Bartlett L, McElvaney O, Milinic T, Hee Wai T BMC Pulm Med. 2024; 24(1):348.

PMID: 39026320 PMC: 11256549. DOI: 10.1186/s12890-024-03163-x.

Qualitative Analysis of Perspectives on Lung Transplant among People with Cystic Fibrosis.

Milinic T, Hobler M, Bartlett L, Gill E, Burdis N, Engelberg R Ann Am Thorac Soc. 2024; 21(7):1044-1052.

PMID: 38259137 PMC: 11284319. DOI: 10.1513/AnnalsATS.202307-625OC.

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