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

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Summary

Background

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.

Method

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.

Results

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.

Conclusion

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.

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.

References (66)

  • L. Millsopp et al.

    Facial appearance after operations for oral and oropharyngeal cancer: a comparison of casenotes and patient-completed questionnaire

    Br J Oral Maxillofac Surg

    (2006)
  • K. Bjordal et al.

    Patient self-reported and clinician-rated quality of life in head and neck cancer patients: a cross-sectional study

    Eur J Cancer B Oral Oncol

    (1995)
  • S.N. Rogers et al.

    A structured review and theme analysis of papers published on ‘quality of life’ in head and neck cancer: 2000–2005

    Oral Oncol

    (2007)
  • A.N. Kanatas et al.

    A systematic review of patient self-completed questionnaires suitable for oral and maxillofacial surgery

    Br J Oral Maxillofac Surg

    (2010)
  • M.G. Biazevic et al.

    Immediate impact of primary surgery on health-related quality of life of hospitalized patients with oral and oropharyngeal cancer

    J Oral Maxillofac Surg

    (2008)
  • K.A. Hassanein et al.

    Psychological outcome of patients following treatment of oral cancer and its relation with functional status and coping mechanisms

    J Craniomaxillofac Surg

    (2005)
  • K. Bjordal et al.

    A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients. EORTC Quality of Life Group

    Eur J Cancer

    (2000)
  • S.N. Rogers et al.

    A comparison between the University of Washington Head and Neck Disease-Specific measure and the Medical Short Form 36, EORTC QOQ-C33 and EORTC Head and Neck 35

    Oral Oncol

    (1998)
  • D.A. Chaukar et al.

    Quality of life in head and neck cancer survivors: a cross-sectional survey

    Am J Otolaryngol

    (2009)
  • A. de Graeff et al.

    Sociodemographic factors and quality of life as prognostic indicators in head and neck cancer

    Eur J Cancer

    (2001)
  • A. Klassen et al.

    Measuring quality of life in cosmetic surgery patients with a condition-specific instrument: the Derriford scale

    Br J Plast Surg

    (1998)
  • D.L. Harris et al.

    The Derriford appearance scale (DAS59): a new psychometric scale for the evaluation of patients with disfigurements and aesthetic problems of appearance

    Br J Plast Surg

    (2001)
  • T.P. Moss

    The relationships between objective and subjective ratings of disfigurement severity, and psychological adjustment

    Body Image

    (2005)
  • S.N. Rogers et al.

    Importance-rating using the University of Washington quality of life questionnaire in patients treated by primary surgery for oral and oro-pharyngeal cancer

    J Craniomaxillofac Surg

    (2002)
  • C. Katre et al.

    Assessment of problems with appearance, following surgery for oral and oro-pharyngeal cancer using the University of Washington appearance domain and the Derriford appearance scale

    Oral Oncol

    (2008)
  • D.L. Harris

    The symptomatology of abnormal appearance: an anecdotal survey

    Br J Plast Surg

    (1982)
  • S.B. Detmar et al.

    How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues

    J Clin Oncol

    (2000)
  • M.L. Brown et al.

    The burden of illness of cancer: economic cost and quality of life

    Annu Rev Public Health

    (2001)
  • J. Ringash et al.

    A structured review of quality of life instruments for head and neck cancer patients

    Head Neck

    (2001)
  • F.S. Herzon et al.

    Head and neck cancer–emotional management

    Head Neck Surg

    (1979)
  • M.J. Dropkin

    Anxiety, coping strategies, and coping behaviors in patients undergoing head and neck cancer surgery

    Cancer Nurs

    (2001)
  • M.J. Dropkin et al.

    Scaling of disfigurement and dysfunction in postoperative head and neck patients

    Head Neck Surg

    (1983)
  • S.B. Detmar et al.

    Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial

    JAMA

    (2002)
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