Assessing preferences in patients with head and neck squamous cell carcinoma: Phase i and ii of questionnaire development

Pierluigi Bonomo, Alice Maruelli, Calogero Saieva, Katherine Taylor, Susanne Singer, Zaira Patelli, Simon Rogers, Davide Mattavelli, Christian Simon, Florian Scotté, Thiago Bueno de Oliveira, Barbara Murphy, Bethany Andrews Rhoten, Umberto Tassini, Marie Fallon, Ourania Nicolatou Galitis, Noam Yarom, Cristiana Bergamini, Paolo Bossi*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish
Article number3577
Pages (from-to)1-17
Number of pages17
Issue number12
StatePublished - Dec 2020


  • Head and neck cancer
  • Multimodal therapies
  • Patient preferences
  • Patient priorities
  • Quality of life


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