Development and evaluation of an information booklet/decision-making guide for patients with colorectal cancer considering therapy in addition to surgery

Authors

  • M. JEFFORD mbbs , mhlthservmt , phd , fracp ,

    Corresponding author
    1. Peter MacCallum Cancer Centre, East Melbourne, Victoria, and the Cancer Information and Support Service, The Cancer Council Victoria, Melbourne, Victoria,
      Dr Michael Jefford, Department of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Locked Bag 1, A’Beckett Street, Victoria 8006, Australia (e-mail: Michael.Jefford@petermac.org).
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  • A. GIBBS ba, dip soc studs ,

    1. Centre for Behavioural Research in Cancer, The Cancer Council Victoria, Melbourne, Victoria, 
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  • D. READING ba, dip ed

    1. Cancer Education Unit, The Cancer Council Victoria, Melbourne, Victoria, Australia
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Dr Michael Jefford, Department of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Locked Bag 1, A’Beckett Street, Victoria 8006, Australia (e-mail: Michael.Jefford@petermac.org).

Abstract

The aim of this project was to develop and evaluate a decision-making guide for patients with colorectal cancer contemplating adjuvant therapy. Initially, a focus group was held, and then a draft booklet was developed, which was reviewed by patients and professionals. A subsequent revised booklet and a questionnaire were mailed to 24 patients and 32 professionals for evaluation. Further changes resulted in the final 100-page decision-making guide, which had a Flesch-Kincaid reading level of 8.0 and DISCERN rating 5. Seventeen patients (71%) and 22 professionals (69%) completed the questionnaire. All patients agreed/strongly agreed the guide was ‘informative’ and ‘written in a way you like’ and 94% considered it ‘helpful for making decisions’. Professionals found it ‘informative’ (95%), ‘written in a pleasing style’ (95%), ‘easy to understand’ (91%) and felt it would ‘help patients make decisions’ (76%), ‘be appropriate to give to patients’ (91%) and would ‘improve patient knowledge and preparedness’ (100%). Further work aims to assess the impact of the guide upon patient outcomes.

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