Head and neck cancer: To what extent can psychological factors explain differences between health-related quality of life and individual quality of life?
Introduction
In 1998, there were 6500 new cases of mouth and throat cancer in the UK, and 2700 deaths, between seven and eight deaths a day. Despite developments in treatment and reconstructive techniques the survival after advanced disease has remained at about 50%, and those who are cured incur considerable morbidity. Support services in the form of speech therapists, dieticians, and prosthetic practitioners have lessened the impact of disability and impaired functioning.
Assessment of the impact of head and neck cancer should encompass more than survival, and extends beyond functioning to include patient well-being. Recently, much has been published on QoL issues in patients with head and neck cancer, but there is wide variation in what is meant by quality of life. The World Health Organisation has defined a high QoL as a ‘state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.’ Using WHO's definition, global QoL should include a patient's psychological and emotional state and his or her satisfaction in work, home life, religion, family, education, and income. Assessing global QoL generally provides a broader picture of the impact of disease on a person's life. In clinical practice, however, QoL usually refers to health-related quality of life (HR-QoL) which examines aspects of QoL affected by a health or medical concern. Assessment of HR-QoL typically includes physical, psychological, and social domains, and tends to make the assumption that a standard set of circumstances is required for optimal well-being.
However, most assessments of HR-QoL do not take into account the fact that many patients have come to terms with their limitations and consequently these areas of measurement may have little impact on their extent of satisfaction. Within this context, there has been little published on the assessment of individualised QoL (how patients perceive their QoL with respect to areas most important to them) and how it compares with more standard measures.
Section snippets
The use of a theoretical framework: the self-regulation model
Standardised HR-QoL varies with time and treatment, but why those with similar stages of disease and treatment should experience different levels of quality of life is not clear. However, there is enormous variation in the way patients adjust to illness and the nature of this adjustment is crucial to psychological and physical outcomes. In addition, this variation is not primarily the result of clinical factors such as severity of illness. To gain a better understanding of how treatment of head
Methods
During the period July 2003 to March 2004, 55 patients who had recently been diagnosed with confirmed squamous cell carcinoma of the head and neck were recruited from four hospitals in the south-east of England, after obtaining approval from the Local Regional Ethics Committee and gaining patients’ informed consent. Data were obtained during the period between confirmation of the diagnosis but before treatment, by self-completed questionnaires and medical records. Patients were recruited into
Statistical analysis
Characteristics of responders and non-responders were assessed for differences using chi square tests for sex and stage of cancer, and an independent Student's t-test for age at diagnosis. Data on the three outcome measures were scored and standardised as per recommendations. Pearson's correlations were calculated among all three outcome measures to assess any associations. Pearson's correlations were also calculated among all variables and each of the three outcome variables to establish
Patients’ characteristics
The sample comprised 55 patients with newly diagnosed head and neck cancer, three quarters of those who had been invited to take part. There were 36 men (65%), which is typical of the disease, and the American Joint Committee on Cancer (AJCC) stages of disease were fairly evenly distributed (Table 1). Those who declined to take part tended to be older and more likely to be men, but the differences were not significant. There was also no significant difference in stage of cancer between
The correlation between standardised HR-QoL and individualised QoL
Standardised HR-QoL and individualised QoL measures were correlated only partly (Table 3). The PGI correlated significantly only with EORTC QLQ-C30 domains of: emotional functioning (r = 0.320, p < 0.05); cognitive functioning (r = 0.368, p < 0.01) and global QoL/health (r = 0.464, p < 0.001), and similarly with SF-12 domains of: mental health (r = 0.421,p < 0.005); role emotional (r = 0.476, p < 0.001); social functioning (r = 0.334, p < 0.05) and role physical (r = 0.304, p < 0.05). This suggests that, before treatment,
Discussion
Although standardised HR-QoL measures are often used in patients with head and neck cancer within a clinical setting, it has been suggested that they fail to capture the individual's sense of ‘quality of life’. This is because they do not focus on the individual's perception of QoL over and above standardised QoL related to pre-selected domains. In contrast, patient-generated outcome (individualised QoL) attempts to capture aspects of QoL that are most important to the individual at that
Acknowledgements
CDL is supported by a grant from Guy's and St Thomas’ Charitable Foundation (no: R020216). Thanks to all the patients and staff from Guy's and St Thomas’ Hospitals, The Royal Sussex County Hospital, and The Royal Marsden Hospital who assisted with this project.
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