InformedTogether: Usability Evaluation of a Web-Based Decision Aid to Facilitate Shared Advance Care Planning for Severe Chronic Obstructive Pulmonary Disease

Lauren M Uhler, Rafael E Pérez Figueroa, Mark Dickson, Lauren McCullagh, Andre Kushniruk, Helen Monkman, Holly O Witteman, Negin Hajizadeh, Lauren M Uhler, Rafael E Pérez Figueroa, Mark Dickson, Lauren McCullagh, Andre Kushniruk, Helen Monkman, Holly O Witteman, Negin Hajizadeh

Abstract

Background: Advance care planning may help patients receive treatments that better align with their goals for care. We developed a Web-based decision aid called InformedTogether to facilitate shared advance care planning between chronic obstructive pulmonary disease (COPD) patients and their doctors.

Objective: Our objective was to assess the usability of the InformedTogether decision aid, including whether users could interact with the decision aid to engage in tasks required for shared decision making, whether users found the decision aid acceptable, and implications for redesign.

Methods: We conducted an observational study with 15 patients and 8 doctors at two ethnically and socioeconomically diverse outpatient clinics. Data included quantitative and qualitative observations of patients and doctors using the decision aid on tablet or laptop computers and data from semistructured interviews. Patients were shown the decision aid by a researcher acting as the doctor. Pulmonary doctors were observed using the decision aid independently and asked to think aloud (ie, verbalize their thoughts). A thematic analysis was implemented to explore key issues related to decision aid usability.

Results: Although patients and doctors found InformedTogether acceptable and would recommend that doctors use the decision aid with COPD patients, many patients had difficulty understanding the icon arrays that were used to communicate estimated prognoses and could not articulate the definitions of the two treatment choices-Full Code and Do Not Resuscitate (DNR). Minor usability problems regarding content, links, layout, and consistency were also identified and corresponding recommendations were outlined. In particular, participants suggested including more information about potential changes in quality of life resulting from the alternative advance directives. Some doctor participants thought the decision aid was too long and some thought it may cause nervousness among patients due to the topic area.

Conclusions: A decision aid for shared advance care planning for severe COPD was found acceptable to most COPD patients and their doctors. However, many patient participants did not demonstrate understanding of the treatment options or prognostic estimates. Many participants endorsed the use of the decision aid between doctors and their patients with COPD, although they desired more information about quality of life. The design must optimize comprehensibility, including revising the presentation of statistical information in the icon array, and feasibility of integration into clinical workflow, including shortening the decision aid.

Keywords: COPD; advance care planning; decision aid; shared decision making; usability testing.

Conflict of interest statement

None declared.

Figures

Figure 1
Figure 1
Icon arrays presented in phase 1 of usability testing. Likely outcomes 12 months after hospitalization for acute COPD exacerbation are shown for 100 hypothetical patients choosing either a Full Code or DNR advance directive.

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