Head and neck lymphoedema patient reported outcomes
Research type
Research Study
Full title
Head and neck lymphoedema patient reported outcomes
IRAS ID
299489
Contact name
Heather Starmer
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 7 months, 30 days
Research summary
Summary of Research
Head and neck lymphoedema is a common consequence of surgical and nonsurgical treatment of head and neck cancers. Assessment of lymphoedema should include not only quantitative measures but also measures of the impact of the oedema on patients. Currently there are no patient reported outcomes tools to evaluate the patient perceived impact of head and neck lymphoedema. The semi-structured interviews proposed for this study will serve as the foundation for development of a validated patient reported outcome tool. We hope to gain a better understanding of the unique challenges experienced by patients with head and neck lymphoedema. This knowledge will contribute to development of a patient reported outcome tool that can be used in clinical practice to assess response to treatment and to determine specific treatment strategies to implement.
Summary of Results
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 as well as their desire to normalize life.
Conclusions: Understanding the impact of HNL on individual patients may be critical to optimize treatment strategies to improve not only the physical burden of HNL, but also QoL. This study provides the framework for developing a patient-reported HNL QoL measure.
Implications for cancer survivors: The development of a HNL specific QoL measure, grounded in the patient perspective will provide cancer care teams with a tool to better understand the impact of HNL on each individual patient in order to tailor patient-centered care to optimize QoL outcomes.REC name
Wales REC 4
REC reference
21/WA/0314
Date of REC Opinion
1 Nov 2021
REC opinion
Further Information Favourable Opinion