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

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.

The impact of patient preference in the treatment algorithm for recurrent/metastatic head and neck squamous cell carcinoma

“…Laryngeal cancer patients mostly preferred radiation treatment alone or in combination with chemotherapy than laryngectomy in order to preserve voice and speech [25,[39][40][41][42]. Notably, the inclusion of RM HNSCC in the aforementioned experiences is underrepresented (22% of patients in the subgroup of palliative treatment [31]) or completely missing.…”

“…Prioritization of cure, survival and swallow was similar by human papillomavirus (HPV) tumor status. By increasing decade of age, older participants were significantly less likely than younger to prioritize survival Bonomo [ 31 ] 7 institutions worldwide 2020 111 15 (13.5%) 20 (23%) Ranking (list of issues from a phase I-II study) Cure of disease, survival-live as long as possible and trusting in health care providers were the 3 most common priorities Mc Neil [ 25 ] Boston, USA 1981 37 37 (100%) NI TTO 20% of pts would choose radiation therapy instead of surgery in order to preserve voice Otto [ 39 ] UT San Antonio, USA 1997 46 46 (100%) NI TTO Only 20% of pts willing to trade survival for function, by a mean of 5.6 years Van der Donk [ 40 ] Rotterdam, Netherlands 1995 20 10 (50%) NI TTO, SG, RS, DC Most respondents preferred RT alone; utilities always higher for RT alone than TL CPS , Chicago Priority Scale; DRS , Decision Regret Scale; FACT-HN , Functional Assessment of Cancer Therapy-Head and Neck; HNC , head and neck cancer; recurrent/metastatic HNC (RM HNC); ICF-HNC , International Classification of Functioning, Disability and Health Core Set for Head and Neck Cancer; PSS-HN , Performance Status Scale for Head and Neck Cancer; PCI , patient concerns inventory; pts , patients; S , subject; UW-QOL , University of Washington Head and Neck Cancer Questionnaire; DC , direct comparison; HNC , head and neck cancer; RS , rating scale; SG , standard gamble; TL , total laryngectomy; TTO , Time Trade Off; RT , radiotherapy; NI , not included; NS , not specified …”

“…Interestingly, a recent prospective phase I–II study has been published with the purpose to develop a HNSCC patients’ preference questionnaire. Among the final list of items for patients’ preferences, “cure of disease,” “survival-live as long as possible” and “trusting in health care providers” were the three most common priorities in 87.3%, 73.6% and 59.1% of patients, respectively [ 31 ].…”

Treatment priorities and regret in older adults with head and neck cancer: A systematic review

“…7 Preliminary research suggests that older adults' priorities differ with maintaining independent living and pain management being at the fore. [7][8][9] Treatment regret may be experienced when it is suspected that an alternative course of action would have resulted in a better outcome, that is, where patient's priorities are not addressed and functional outcome and visual appearance differ from expectation. 10 We must develop a better understanding of the unique considerations appropriate for the older patient when discussing treatment objectives and treatment burden.…”

“…Research into treatment priorities has focused on younger HNC patients with curing cancer and prolonging life rated as their top concerns 7 . Preliminary research suggests that older adults' priorities differ with maintaining independent living and pain management being at the fore 7–9 .…”