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

Author:

Hartzler Andrea L1ORCID,Bartlett Lauren E2,Hobler Mara R2,Reid Nick1,Pryor Joseph B3,Kapnadak Siddhartha G2,Berry Donna L4,Lober William B14,Goss Christopher H2,Ramos Kathleen J2,Dunitz Jordan,Saavedra Milene,Pilewski Joseph M,Brown Cynthia D,Jia Shijing,Sears Edmund H,Neuringer Isabel,Polenakovik Hari M,Tsai Cynthia,

Affiliation:

1. Department of Biomedical Informatics and Medical Education, School of Medicine, University of Washington , Seattle, Washington, USA

2. Division of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, School of Medicine, University of Washington , Seattle, Washington, USA

3. Department of General Internal Medicine, School of Medicine, University of Washington , Seattle, Washington, USA

4. Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington , Seattle, Washington, USA

Abstract

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.

Funder

National Institutes of Health

Cystic Fibrosis Foundation

Publisher

Oxford University Press (OUP)

Subject

Health Informatics

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