A systematic review of questionnaires to measure the impact of appearance on quality of life for head and neck cancer patients

Abstract

Facial disfigurement is often experienced by head and neck cancer (HNC) patients following surgery and has a significant impact on their quality of life (QOL). The aim of the current review is to assess patient-reported outcome (PRO) measures for use in HNC patients, appraise the psychometric properties of QOL instruments that include an appearance domain and determine which instrument/s might be the most appropriate for use in HNC patients in clinical practice and research. A systematic search of the English-language literature was performed using the Medline and PsycINFO electronic databases. PRO measures designed to assess QOL and the impact of disfigurement on QOL were identified. Instruments were evaluated based on their development and validation criteria, appearance domain content and use in assessing QOL outcomes in HNC patients. From 530 articles, 18 QOL questionnaires were identified. Only five PRO instruments were considered suitable for review: University of Washington QOL questionnaire (UWQOLQ); Head and Neck Survey (HNS); European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Head and Neck 35 (EORTC QLQ-H&N35); Derriford Appearance Scale 59 (DAS59) and the Derriford Appearance Scale 24 (DAS24). The UW-QOL has better coverage of appearance issues than the EORTC QLQ-H&N35 and the HNS, is well validated and demonstrates promising psychometric properties. The DAS24 and DAS59 which are devoted solely to appearance issues and are not specific to HNC, have had psychometric properties tested in large scale studies, but have only been used in clinical practice in a limited number of studies. The available evidence suggests the UW-QOL is the most appropriate screening tool to assess appearance issues in clinical practice. The DAS24 shows promise as a research tool for improving understanding of how appearance affects QOL in HNC patients.