A mixed methods examination of distress and person-centred experience of head and neck lymphoedema

Purpose: This study aimed to examine the course and nature of distress and quality of life (QoL) during and after head and neck lymphoedema (HNL) treatment in people who developed HNL following treatment for head and neck cancer (HNC). Methods: This study (n = 10) used a mixed method explanatory design to explore distress associated with HNL. Component 1 used a prospective repeated measures design to examine distress during a 22-week HNL program. Component 2 used a qualitative interview approach to understand the patient experience of distress after completion of HNL treatment. Results: During the HNL program distress associated with HNL significantly reduced from baseline to week 6 (p = 0.015), and baseline to week 22 (p = 0.007). There were no significant differences in QoL, body image or fear of cancer progression over time. Self-reported presence of HNL significantly reduced from baseline to week 6 (p = 0.02), week 6 to week 22 (p = 0.026), and from baseline to week 22 (p = 0.001). Qualitative interviews using thematic analysis following HNL treatment, revealed 6 major themes associated with the experiences of distress related to HNL - psychological impact; physical appearance and pattern/timing; experience of receiving treatment; day to day impact; supports that helped manage distress; and adjustment to a new normal. Conclusions: This study found that distress associated with cancer treatment-related HNL may reduce with the delivery of a HNL program. Interview data following completion of the HNL treatment identified several themes related to HNL and its relationship with distress, function and day-to-day life.