JMIR Publications

ABSTRACT

Background:

Published research demonstrates that existing oral health-related quality of life (OHRQoL) instruments do not comprehensively capture the lived experience of head and neck cancer (HNC) survivors following treatment and rehabilitation. We previously developed a patient-centred framework of 34 items across ten domains, comprising 16 items absent from pre-existing OHRQoL tools and 16 new items. Interrogating this framework through modified-Delphi methods alongside thematic analysis will clarify the distinction between lived and measured experience.

Objective:

The primary aim is to evaluate the appropriateness, relevance, and acceptability of published OHRQoL questionnaires from the perspective of HNC survivors, using a modified Delphi-informed technique embedded within structured focus group sessions.

Methods:

Three sequential focus groups will follow a modified Delphi-informed design. Each session pairs facilitated discussion of a defined aspect of questionnaire design with anonymised individual voting using 5-point Likert ratings. Aggregate results will be fed back at the subsequent session. Consensus is defined as ≥70% agreement at ratings ≥4. Three tools/tool groups will be reviewed: QLQ-H&N43 with QLQ-OH15 and QLQ-C30; VHNSS 2.0; and OHIP-14. Discussions will be transcribed, thematically coded and synthesised with voting data to generate prioritised recommendations. Consolidated patient-derived recommendations will then be reviewed by a multidisciplinary clinician reference group for clinical coherence and feasibility, without amendment of the patient consensus.

Results:

N/A - protocol publication. See methods section.

Conclusions:

The study will produce a consensus-based assessment of the suitability of existing OHRQoL tools for HNC survivors, identifying limitations in item coverage, language acceptability and structural design. Findings will inform a revised, patient-centred instrument for prospective validation. Clinical Trial: N/A