Health-related quality of life in patients with a head and neck sarcoma: a mixed-methods study

Abstract

Background: patients with head and neck sarcomas (HNS) face unique health-related quality of life (HRQoL) challenges due to its disease rarity. This study examined and identified the prevalence of generic- and location-specific HRQoL issues.

Methods: quantitative data from 72 HNS survivors (SURVSARC study), and qualitative data from 18 HNS patients (EORTC QoL VOICE study) were examined. Descriptive statistics was used for questionnaire data. Qualitative data was thematically analysed.

Results: quantitative findings showed fatigue (68%), speaking issues (50%), and dry mouth (48%) as common problems. Qualitative findings supported quantitative results and highlighted HNS-specific issues, including throat pain, impaired tongue mobility, and swelling in the face and neck.

Conclusion: HNS patients share symptoms to other cancers, but location-specific issues, such as lack of tongue mobility require tailored measurement strategies. Combining generic (EORTC QLQ-C30), location-specific (EORTC QLQ-H&N43) questionnaires, and a HNS-specific item list provides a comprehensive HRQoL assessment for future research and clinical practice.

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