Do we get it right? Radiation oncology outpatients' perceptions of the patient centredness of life expectancy disclosure

Authors

  • Lisa J. Mackenzie,

    Corresponding author
    1. Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, The University of Newcastle, Callaghan, New South Wales, Australia
    2. Hunter Medical Research Institute, Newcastle, Australia
    • Correspondence to: Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, The University of Newcastle, New South Wales, Australia. E-mail: Lisa.Mackenzie@uon.edu.au

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  • Mariko L. Carey,

    1. Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, The University of Newcastle, Callaghan, New South Wales, Australia
    2. Hunter Medical Research Institute, Newcastle, Australia
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  • Chris L. Paul,

    1. Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, The University of Newcastle, Callaghan, New South Wales, Australia
    2. Hunter Medical Research Institute, Newcastle, Australia
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  • Rob W. Sanson-Fisher,

    1. Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, The University of Newcastle, Callaghan, New South Wales, Australia
    2. Hunter Medical Research Institute, Newcastle, Australia
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  • Catherine A. D'Este

    1. Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, The University of Newcastle, Callaghan, New South Wales, Australia
    2. Hunter Medical Research Institute, Newcastle, Australia
    3. Priority Research Centre for Gender, Health and Ageing, School of Medicine and Public Health, The University of Newcastle, Callaghan, New South Wales, Australia
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Abstract

Objective

A patient-centred approach to discussing life expectancy with cancer patients is recommended in Western countries. However, this approach to eliciting and meeting patient preferences can be challenging for clinicians. The aims of this study were the following: (i) to examine cancer patients' preferences for life expectancy disclosure; and (ii) to explore agreement between cancer patients’ preferences for, and perceived experiences of, life expectancy disclosure.

Methods

Cancer patients undergoing radiotherapy treatment in metropolitan Australia completed a cross-sectional touchscreen computer survey including optional questions about their life expectancy disclosure preferences and experiences.

Results

Of the 208 respondents, 178 (86%) indicated that they would prefer their clinician to ask them before discussing life expectancy, and 30 (14%) indicated that they would prefer others (i.e. clinicians, family) to decide whether they were given life expectancy information. Of the 175 respondents who were classified as having a self- determined or other-determined disclosure experience, 105 (60%) reported an experience of life expectancy disclosure that was in accordance with their preferences. Cohen's κ was −0.04 (95% CI, −0.17, 0.08), indicating very poor agreement between patients' preferences for and perceived experiences of life expectancy disclosure (p = 0.74).

Conclusions

In light of patient-centred prognosis disclosure guidelines, our findings of a majority preference for, and experience of, a self-determined approach to life expectancy disclosure amongst radiation oncology patients are encouraging. However, poor agreement between preferences and experiences highlights that additional effort from clinicians is required in order to achieve a truly patient-centred approach to life expectancy disclosure. Copyright © 2013 John Wiley & Sons, Ltd.

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