Head and neck lymphedema and quality of life: the patient perspective.

PURPOSE: Head and neck lymphedema (HNL) is common after head and neck cancer (HNC). This study aimed to explore quality of life (QoL) in patients with HNL to guide the development of a patient-reported QoL measure. METHODS: We conducted semi-structured interviews with 22 HNC survivors with HNL. Interviews explored participants' experiences of living with HNL. Analysis of interview transcripts drew on qualitative content analysis to ensure themes were grounded in patient experience. RESULTS: Two main themes were established: "I want to live my life" and "It was like things were short-circuited." These themes encompassed the substantial disruption patients attributed to the HNL and their desire to normalize life. CONCLUSIONS: Understanding the impact of HNL on individual patients may be critical to optimizing treatment strategies to improve the physical burden of HNL and QoL. This study provides the framework for developing a patient-reported HNL QoL measure. IMPLICATIONS FOR CANCER SURVIVORS: The development of an HNL-specific QoL measure, grounded in the patient perspective, may provide cancer care teams with a tool to better understand HNL's impact on each patient to tailor patient-centered care and optimize QoL outcomes.