Author: Randall Morton
Morton, Randall, 2019 Development and implementation of quality of life measures in head and neck cancer patients, Flinders University, College of Medicine and Public Health
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Background:
A diagnosis of head and neck cancer (HNC) heralds a life-threatening event for patients. Quality of Life (QOL) assessment is an important outcome measure, as HNC treatment imposes enduring post-treatment difficulties for the survivors, often leading to a degree of psychological distress, and an adverse impact on physical, role, and social functioning. QOL status has a major impact on the extent to which patients need to access healthcare support services, and the degree to which they engage socially. Clinical research into QOL outcomes provides data that ensures that clinicians are uniquely placed to anticipate and plan for patient needs and to determine appropriate choice among different treatment options.
Patients and Method:
The research incorporated in this thesis includes publications spanning 28 years, from 1984 to 2012. The first research was a pilot, cross-sectional, observational study of previously treated HNC patients that demonstrated the substantial psychological impact of HNC treatment. This prompted further exploration of QOL assessment in which a valid and reliable QOL instrument was designed and subsequently used in a prospective observational study of a cohort of Auckland HNC patients. These studies were conducted at a time when understanding of QOL in HNC was in its infancy .
Indeed, the Auckland cohort study of 201 patients was one of the first large longitudinal studies of QOL outcomes in HNC patients. Life satisfaction was used as a multi-dimensional global QOL composite measure, and Calman’s Gap Theory was invoked to explain the dynamics of perceived global QOL. The data from this Auckland cohort were used in subsequent investigations to assess the impact of pain and time on global QOL, and the relationship between QOL and survival.
Results:
Important issues in this thesis include a discussion of: the role of an overall, or global, QOL measure as an important dependent variable for outcomes research; the central role of Calman’s “Gap Theory” in the understanding and interpretation of QOL outcomes in cancer patients; and an appreciation of the “response shift” phenomenon, as manifest by a paradoxical relationship between perceived post-treatment QOL and reported functional measures.
Findings from the studies incorporated in this thesis have shown that the pattern of post-treatment QOL outcomes is determined by tumour site and stage, that post-treatment global QOL is significantly associated with survival, that culture has a significant impact on perceived global QOL, and that there is a significant late deterioration in global QOL for HNC survivors.
The consequence of these findings is that QOL outcomes are important to include in the process of shared clinical decision-making.
Conclusion:
The published works show how the phenomenon of QOL assessment has developed over the period in review, culminating in an appreciation of how the information from QOL outcomes has shaped clinical decision-making. The report of the relationship between culture and QOL outcomes has added significantly to the understanding of the dynamics of health-related QOL, while observations relating to long-term QOL outcomes, and the prognostic role of early of post-treatment QOL outcomes, have the potential to substantially influence future clinical practice.
Keywords: Head and Neck Cancer, Quality of Life, Survival,
Subject: Medicine thesis
Thesis type: Doctor of Philosophy
Completed: 2019
School: College of Medicine and Public Health
Supervisor: Professor R McKinnon