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

Abstract

ObjectivePatients 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.MethodsGuided 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.ResultsPatients 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.ConclusionThis 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 http://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 (http://ClinicalTrials.gov Identifier: NCT03292341).Level of EvidenceNA Laryngoscope, 129:2733–2739, 2019

Cost‐Effectiveness of Surgery Versus Organ Preservation in Advanced Laryngeal Cancer

“…Therefore, it is of great value to make adequate information available regarding QALY differences between surgery and OP treatments to facilitate the survival versus QoL tradeoff and improve shared, personalized decision‐making. Presently a decision‐aid for laryngeal cancer treatment is being developed 5 and implementing adequate QALY data in the tool could improve (objective) information provided to patients. Additionally, the uncertainty presented in the CEAC is mostly due to the higher surgery costs.…”

“…4 Not only survival outcomes, but also treatment effects on quality of life (QoL) and physical and psychosocial functioning are crucial in decision-making. 5 In advanced laryngeal cancer patients, no significant differences in QoL outcome were reported between treatment with either total laryngectomy or chemoradiation. However, they do have different toxicities (e.g., the chemoradiation group had more problems with dry mouth whereas the laryngectomy group suffered from disturbances in smell, use of painkillers and taste and coughing).…”

“…In example, most studies on patients with T3 laryngeal carcinoma do not report significant differences in overall survival (OS) between surgery and organ preserving (OP) modalities 4 . Not only survival outcomes, but also treatment effects on quality of life (QoL) and physical and psychosocial functioning are crucial in decision‐making 5 . In advanced laryngeal cancer patients, no significant differences in QoL outcome were reported between treatment with either total laryngectomy or chemoradiation.…”

Empowering patients in decision‐making in radiation oncology – can we do better?

“…Involvement of former patients in definition of decision aids therefore is paramount. A recently developed decision aid for advanced laryngeal carcinoma (Petersen et al, 2019) shows promise in that it was specifically designed in collaboration with head and neck surgeons, radiation oncologists and former patients who had had total laryngectomy or chemoradiation Fig. 3.…”

Medical Care-Related Decisions among Patients Diagnosed with Early Stage Malignant Brain Tumor: A Qualitative Study

“…There has been a growing international debate regarding medical care-related decision-making among patients with cancer, and many studies have discussed the provision of support for patients during the decision-making process (Banning, 2008;Charles et al, 1999;Menard et al, 2012;Petersen et al, 2019;Zafar et al, 2009). Since the early 1990s, three typical decision-making approaches have often been described: paternalistic, informed, and shared.…”