An important aspect of patient-centered support is the incorporation of tools to provide education regarding treatment options when appropriate and which are based on the best evidence. This can be achieved with shared decision making (SDM) which is when the clinical provider shares information with the patient about the disease probabilities and treatment options specific to them to arrive at a decision about a management plan. The objective of this case study is to present the development of a decision aid to facilitate informed decision making among adults with cystic fibrosis (CF).
A decision aid was built to help CF patients make better informed decisions regarding treatments and advance care planning. This initiative was funded by the Cystic Fibrosis Foundation. “Think aloud” usability testing was conducted to assess patient needs as they navigated through the web-based decision aid, titled “InformedChoices CF Decision Aid”. Participants provided feedback on content, comprehension, and navigation. In addition, a series of usability tasks were completed to ensure the website was easy to navigate during discussions with providers. The System Usability Scale (SUS) assessed the participants’ perceptions regarding ease-of-use of the decision aid. The enrollment of 12 participants (5 clinicians, 5 adults with CF, and 2 family/surrogate caregivers) took place from March 9-August 30, 2018.
During usability testing, three generalized themes were identified: 1) functionality, 2) visibility and navigation, and 3) content and usefulness. Areas of improvement noted by the participants was reducing repetition, enhancing comprehension, and changing the flow. Based on responses from the participants, navigation of the site was easy for clinicians, patients, and surrogates. Amongst the 12 participants, the decision aid was rated excellent based on the SUS score.
After usability testing:
Prior to usability testing:
User testing of the web-based decision aid yielded overall positive feedback, suggesting future success of the decision aid. By incorporating patient-centered support into the decision aid, the aid will lead to greater adoption and a useful resource for CF patients. The case study presented one of a few examples our research group has worked on to develop decisions aids through an iterative process to ensure the decision aid can be an effective communication tool.