A systematic review of questionnaires to measure the impact of appearance on quality of life for head and neck cancer patients
Introduction
Radical surgery can prolong survival time in head and neck cancer (HNC) patients but it is increasingly recognised that these gains may be offset by a substantial loss in quality of life (QOL) due to deformity and disability.1, 2, 3, 4, 5, 6 The important role of facial appearance in self esteem and society's aversion to visible deformity means that its alteration can have a significant impact on QOL, so that HNC patients may fear facial disfigurement more than disease recurrence.7, 8, 9, 10, 11, 12 Assessment of QOL may assist in developing appropriate treatment options and facilitate communication between physicians and patients by highlighting areas of concern.13, 14, 15 QOL evaluation can help to monitor the response of patients and assist with their understanding,5 and expectations,15 of the consequences of aggressive treatment.
Evidence suggests patients are reluctant to burden clinicians with concerns about appearance13 and may only raise the issue towards the end of the consultation.13, 16, 17 There is poor awareness among many clinicians of patients' concern with disfigurement, as clinicians tend to prioritise functional problems such as speech or swallowing.18 Three assessment methods have been used to evaluate QOL in HNC patients: self-reported or patient-reported outcome (PRO) questionnaires; semi-structured interviews; and qualitative approaches.19 PRO questionnaires have become the preferred method of assessment because their ease of use and reproducibility make them practical for both research and clinical use.9, 20, 21, 22 They also generate numerical data which is suitable for statistical analysis. For these reasons, only PRO instruments are reviewed in this study. PRO instruments can either be generic, measuring QOL in all states of a person's condition, or they can be disease-specific.
There is currently no “gold standard” available to assess the impact of appearance changes in HNC patients.8 None of the several review articles published on QOL assessment in HNC,8, 9, 14, 23, 24, 25 have reviewed instruments that specifically assess appearance.24 The aim of this review is to critically analyse studies that have used PRO measures to assess the impact of disfigurement in HNC patients, appraise the psychometric properties of QOL instruments that include a specific appearance domain and determine which available QOL instruments might be the most appropriate for use in HNC.
Section snippets
Methods
A comprehensive electronic bibliographic search was performed between 26th and 29th August 2012 by one author. The electronic databases Medline (Web of Knowledge v5.7) and PsycINFO (Proquest) were searched including search terms: head and neck cancer, facial disfigurement, questionnaire, quality of life and patient-reported outcomes (Figure 1). A full grey literature search was not conducted after a preliminary search identified no literature fitting the inclusion criteria. The QOL instruments
Results
In the initial search for instruments and their validation, 530 articles were identified. Title and abstract examination excluded 475 studies, leaving 55 studies to review. Eighteen QOL questionnaires were identified. Five satisfied the inclusion criteria when the full versions were examined: 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),
QOL instruments for HNC patients that assess appearance issues
The UW-QOL is a self-administered questionnaire specifically for use with HNC patients.26 It has been through several revisions, the latest consisting of 15 items – 12 disease-specific items (assessing pain, appearance, activity, recreation, swallowing, chewing, speech, shoulder, taste, saliva, mood and anxiety domains) and three global QOL items. This version also asks patients to rate the three most important domains with the opportunity for free-text comment. UW-QOL is completed in around
Discussion
Facial disfigurement is frequently experienced by HNC patients and has a strong impact on their QOL8 as they manage the diagnosis of HNC and the visible facial disfigurement that may result from treatment.7, 11, 12 These consequences are accentuated by the central role of the face in social communication and expression.7, 59, 60 Reconstructive surgery aims to alleviate these effects but the benefits of good reconstruction are difficult to quantify. This review aims to appraise the psychometric
Conclusions
The UW-QOL is considered the most well developed and validated questionnaire to clinically evaluate appearance problems in HNC patients. Disfigurement can be more comprehensively evaluated through the use of DAS24. However, further studies are needed to comprehensively assess the UW-QOL and DAS24 content abilities in evaluating appearance issues in HNC patients and in their combined use.
Conflict of interest/funding
None declared.
Acknowledgement
The authors would like to acknowledge the support of Dr Justin Bilszta, Medical Education Unit, Melbourne Medical School, University of Melbourne for giving constructive comments which have strengthened this paper.
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