Developing a Decision Aid to Facilitate Informed Decision Making About Invasive Mechanical Ventilation and Lung Transplantation Among Adults With Cystic Fibrosis: Usability Testing

  • Authors
  • D'Arcy King
  • Daniel Dunne
  • Jeffrey Solomon
  • Jennifer Polo
  • Karine Calise
  • Katherine L. Dauber-Decker
  • Melissa Basile
  • Negin Hajizadeh
  • Sundas Khan
  • Published
  • JMIR Human Factors



Cystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (decision aid) to help CF patients make better informed decisions regarding treatments and advance care planning (ACP). We built the decision aid around two major treatment decisions: whether or not to have a lung transplant, and whether or not to agree to intubation.


To present results from iterative usability testing of the InformedChoices Cystic Fibrosis advance care planning decision aid among adults with cystic fibrosis, their clinicians and family caregivers.


We performed a patient needs assessment and “think aloud” usability testing with CF patients, their surrogates, and clinicians caring for CF patients. “Think aloud” participants provided feedback while navigating the decision aid and answered surveys. Session transcripts and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation.


Participants gave the decision aid an average System Usability Scale (SUS) score of 88.33 (“excellent”). Comments were coded into three themes: Functionality, Visibility and Navigation, and Content and Usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow.


Usability testing revealed areas for potential improvement. Testing also yielded positive feedback, suggesting the decision aid’s future success.Integrating changes prior to implementation should improve the decision aid’s comprehension, navigation, and usefulness, and lead to greater adoption.