TY - JOUR TI - Assessing preferences in patients with head and neck squamous cell carcinoma: Phase i and ii of questionnaire development AU - Bonomo, P. AU - Maruelli, A. AU - Saieva, C. AU - Taylor, K. AU - Singer, S. AU - Patelli, Z. AU - Rogers, S. AU - Mattavelli, D. AU - Simon, C. AU - Scotté, F. AU - de Oliveira, T.B. AU - Murphy, B. AU - Rhoten, B.A. AU - Tassini, U. AU - Fallon, M. AU - Galitis, O.N. AU - Yarom, N. AU - Bergamini, C. AU - Bossi, P. JO - JMIR Cancer PY - 2020 VL - 12 TODO - 12 SP - 1-17 PB - MDPI AG SN - null TODO - 10.3390/cancers12123577 TODO - adult; aged; Article; cancer palliative therapy; cancer patient; cancer survival; cancer therapy; clinical feature; controlled study; correlation analysis; drug efficacy; expectation; female; follow up; head and neck squamous cell carcinoma; health care personnel; human; major clinical study; male; middle aged; multimodality cancer therapy; patient attitude; patient preference; patient selection; prevalence; quality of life; questionnaire; semi structured interview; standardization; systematic review; toxicity; trust TODO - 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. © 2020 by the authors. Licensee MDPI, Basel, Switzerland. ER -