Improving decision making in larynx cancer by developing a decision aid: A mixed methods approach

Abstract

Objective: Patients diagnosed with advanced larynx cancer face a decisional process in which they can choose between radiotherapy, chemoradiotherapy, or a total laryngectomy with adjuvant radiotherapy. Clinicians do not always agree on the best clinical treatment, making the decisional process for patients a complex problem.

Methods: Guided by the International Patient Decision Aid (PDA) Standards, we followed three developmental phases for which we held semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and a study-specific questionnaire. Audio-recorded interviews were verbatim transcribed, thematically coded, and analyzed. Phase 1 consisted of an evaluation of the decisional needs and the regular counseling process; phase 2 tested the comprehensibility and usability of the PDA; and phase 3 beta tested the feasibility of the PDA.

Results: Patients and doctors agreed on the need for development of a PDA. Major revisions were conducted after phase 1 to improve the readability and replace the majority of text with video animations. Patients and physicians considered the PDA to be a major improvement to the current counseling process.

Conclusion: This study describes the development of a comprehensible and easy-to-use online patient decision aid for advanced larynx cancer, which was found satisfactory by patients and physicians (available on www.treatmentchoice.info). The outcome of the interviews underscores the need for better patient counseling. The feasibility and satisfaction among newly diagnosed patients as well as doctors will need to be proven. To this end, we started a multicenter trial evaluating the PDA in clinical practice (ClinicalTrials.gov Identifier: NCT03292341).

Level of evidence: NA Laryngoscope, 129:2733-2739, 2019.

Keywords: Patient decision aid; chemoradiotherapy; counseling; health communication; laryngectomy; larynx cancer; radiotherapy.

© 2019 The Authors. The Laryngoscope published by Wiley Periodicals, Inc. on behalf of The American Laryngological, Rhinological and Otological Society, Inc.

Figures

Figure 1

Developmental process. Flowchart of the developmental process of the PDA (analogy of IPDAS checklist).21 IPDAS = International Patient Decision Aid Standards; PDA = Patient Decision Aid.

Figure 2

Layout of the first version of the PDA. (A) Home page of the PDA. For each treatment option, we included videos of doctors explaining the treatment and videos of patients who are interviewed on their decisional process, the treatment, and their quality of life. (B) The PDA contains a short summary with the risks and benefits of each option laid out next to each other and estimated overall survival rates per treatment and tumor characteristics (based on the tumor‐node‐metastasis classification). (C) All the treatment options are explained using text, pictures, and videos (D). At the end, patients can fill in a knowledge and preference test. They are encouraged to take the results of these tests to their physician to identify potential gaps in their knowledge and discuss personal preferences. PDA = Patient Decision Aid.

Figure 3

Layout of the final version of the PDA. With the results of the interviews, major changes were made. The majority of text was replaced by animation videos (A, B) explaining the details of all the different treatment options, and textual corrections suggested by the physicians were adjusted. We added a voic‐over so patients would not have to read the text, and the structure of the PDA is now explained at the homepage with an introduction animation video. (C) Large texts were summarized, but the more comprehensive text was still available on request via an extra information button. (D) Furthermore, bright colors were replaced with blue and white tones. An extra patient video was added. PDA = Patient Decision Aid.