Long-term effects of radiotherapy in head and neck cancer: Trismus and patient perspectives

Abstract

This thesis aims to increase knowledge about patients’ long-term symptoms related to mouth opening, pain perception, and health-related quality of life (HRQL) after radiotherapy for head and neck cancer (HNC). Furthermore, it aims to enhance the understanding of how patients experience and cope with troublesome symptoms and how healthcare can improve support for this patient group. Papers I–III, longitudinal cohort studies of patients with HNC in Region Västra Götaland, Sweden, assess maximal interincisal opening (MIO) and HRQL using validated questionnaires for up to five years post-treatment. Paper IV explores postradiation trismus by analyzing interviews using qualitative content analysis. Results: Paper I: Prevalence of trismus was 27% at the 1-year follow-up and 28% at the 5-year follow-up. Paper II: Patients with trismus reported significantly poorer HRQL and a higher symptom burden related to mouth opening at both the 1-year and 5-year follow-ups compared to those without trismus. Paper III: Facial pain was reported by 50% of the cohort before oncologic treatment, 70% at the 3-month follow-up, 54% at the 1-year follow-up, and 41% at the 5-year follow-up. Patients reporting pain had significantly smaller MIO and scored worse on more HRQL items. Paper IV: Four main categories were identified: Bodily symptoms, Effects on life, Support from the healthcare system, and Strategies to handle life and symptoms. Difficulties with eating and limited social function were commonly reported. Patients wanted healthcare providers to provide more information about access to support groups and counseling. Conclusions: Trismus and facial pain are common, long-lasting complications following radiotherapy for HNC that impact HRQL. A multidisciplinary team approach and individualized follow-up with evidence-based care would support long-term wellbeing in this patient group.