Assessing Preferences in Patients with Head and Neck Squamous Cell Carcinoma: Phase I and II of Questionnaire Development

SIMPLE SUMMARY: Decision-making is often complex and challenging for head and neck cancer. In respect to the disease trajectory and proposed treatment, the patient expression of preferences can be extremely subjective, ultimately depending on several factors such as age at cancer diagnosis, burden of symptoms, closeness to family and availability of caregivers, psychological well-being, and individual cultural, socioeconomic and religious factors. Developing a specific questionnaire to assess patient preferences may allow fostering a more aware patient-centered approach in multidisciplinary management. Through a standardized process for developing questionnaire modules, a 24-item list was generated, laying the ground for further testing and validation on a large scale. ABSTRACT: Shared-decision making for head and neck squamous cell carcinoma (HNSCC) is challenged by the difficulty to integrate the patient perception of value within the framework of a multidisciplinary team approach. The aim of this study was to develop a questionnaire to assess the preferences of HNSCC patients with respect to the disease trajectory, expected treatment, and toxicities. In accordance with the standardized EORTC Quality of Life Group’s methodology for the development of quality of life modules, a phase 1–2 study was envisaged. Following a systematic review of the literature, a consolidated list of 28 issues was administered through a semi-structured interview to 111 patients from 7 institutions in 5 countries. Overall, “cure of disease”, “survival”, and “trusting in health care professionals” were the 3 most common priorities, being chosen by 87.3%, 73.6% and 59.1% of patients, respectively. When assessing the correlation with the treatment subgroup, the issue of “being thoroughly and sincerely informed about treatments’ efficacy and survival expectation” was highly prevalent in an independent manner (71.4%, 75% and 90% of patients in the follow-up, palliative and curative subgroups, respectively). Based on prespecified scoring criteria, a 24-item list was generated. Pending clinical applicability, further testing and validation of the questionnaire are warranted.