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. 2020 Nov 30;12(12):3577.
doi: 10.3390/cancers12123577.

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

Pierluigi Bonomo  1 , Alice Maruelli  2 , Calogero Saieva  3 , Katherine Taylor  4 , Susanne Singer  4   5 , Zaira Patelli  6 , Simon Rogers  7 , Davide Mattavelli  8 , Christian Simon  9 , Florian Scotté  10 , Thiago Bueno de Oliveira  11 , Barbara Murphy  12 , Bethany Andrews Rhoten  13 , Umberto Tassini  14 , Marie Fallon  15 , Ourania Nicolatou Gatidis  16 , Noam Yarom  17   18 , Cristiana Bergamini  19 , Paolo Bossi  20
Affiliations

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

Pierluigi Bonomo et al. Cancers (Basel). .

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.

Keywords: head and neck cancer; multimodal therapies; patient preferences; patient priorities; quality of life.

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Conflict of interest statement

P.B. (Pierluigi Bonomo) reports advisory board fees from Angelini Pharma, Merck Serono, Merck Sharp & Dohme, and Bristol-Myers Squibb, outside the submitted work; S.S. reports personal fees from Lilly, Pfizer, Boehringer-Ingelheim, and Alexion, outside the submitted work; C.S. (Christian Simon) reports grants from Roche, grants from Intuitive, personal fees from Pfizer, personal fees from Merck Serono, personal fees from MSD, personal fees from Seattle Genetics, outside the submitted work; (Florian Scottè) F.S. reports personal fees from Tesaro, Helsinn, Vifor, MSD, Roche, AMGEN, Pierre Fabre Oncology, Pfizer, Leo Pharma, Mundi Pharma, Myla, Tilray, outside the submitted work; P.B. (Paolo Bossi) reports advisory board fees or conference honoraria from Merck, Sanofi, Merck Sharp & Dohme, Sun Pharma, Angelini, AstraZeneca, Bristol-Myers Squibb, Helsinn, GSK; all other authors report no conflicts of interest.

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