Development and preliminary evaluation of a bowel cancer screening decision aid for adults with lower literacy Sian K. Smith a, *, Lyndal Trevena a , Alexandra Barratt b , Ann Dixon a , Don Nutbeam c , Judy M. Simpson c , Kirsten J. McCaffery a a Screening and Diagnostic Test Evaluation Program, Centre for Medical Psychology and Evidence Based Decision Making, School of Public Health, University of Sydney, New South Wales, NSW, Australia b Centre for Medical Psychology and Evidence Based Decision Making, School of Public Health, University of Sydney, New South Wales, Australia c School of Public Health, University of Sydney, New South Wales, Australia 1. Introduction The concept of informed choice is an important aspect of ethical health care and, in recent years, it has received widespread support in the area of cancer screening [1,2]. To ensure that people can make an informed choice about screening, information must meet their needs, and be understood, regardless of their literacy level [3]. This may be particularly important in the context of the recent implementation of population based bowel cancer screening programs in the UK, Canada, and Australia. The Australian National Bowel Cancer Screening program was introduced in 2007, and currently offers biennial screening to people turning 50, 55 and 65 years. Eligible adults receive an invitation and faecal occult blood test (FOBT) kit through the mail, to complete and return. Therefore, unlike breast and cervical cancer screening programs, the decision to participate in bowel cancer screening, is usually made at home without any discussion with a health care professional. To promote informed decision making, resources such as decision aids have been developed, evaluated, and implemented across a variety of health care settings [4]. Decision aids aim to present balanced information about the benefits and harms of health care options. Such tools have been shown to enhance patients’ knowledge of their options, result in more accurate perceptions of risk, and help patients clarify their values in relation Patient Education and Counseling 75 (2009) 358–367 ARTICLE INFO Article history: Received 31 July 2008 Received in revised form 22 January 2009 Accepted 23 January 2009 Keywords: Informed choice Informed decision making Bowel cancer screening Decision aid Literacy Health literacy ABSTRACT Objective: Several countries have recently implemented national bowel cancer screening programs. To ensure equal access to screening, information is needed to suit adults ranging in literacy level. Decision aids are effective in providing balanced information and have been applied in screening. However, few have been designed for populations with lower education and literacy. This article describes the development and preliminary evaluation of a bowel cancer screening decision aid for this group. Method: We conducted face-to-face interviews with adults of varying literacy ability, to develop the decision aid (Stage 1). We applied principles of plain language, created visual illustrations to support key textual messages, and used colour coding to direct the reader through the booklet. We then explored its acceptability and comprehension among consumers with higher and lower education (Stage 2). Participants were recruited from a community sample with lower education and a university alumni network. Results: A total of 75 participants were interviewed, 43 with lower educational attainment and 32 with university education. The decision aid was positively reviewed by both education groups. Results highlighted the need to clarify the purpose of the decision aid and the availability of choice in the context of screening, especially to those with lower education. Conclusion: The 2 stage iterative development process identified important factors to consider in the development of decision tools for this target group, and is recommended. Practice implications: Our findings have implications for how to support people with lower education and literacy make informed screening decisions. ß 2009 Elsevier Ireland Ltd. All rights reserved. * Corresponding author at: Screening and Diagnostic Test Evaluation Program, Centre for Medical Psychology and Evidence Based Decision Making, Room 126A, School of Public Health, Edward Ford Building (A27), Fisher Road, University of Sydney, NSW 2006, Australia. Tel.: +61 2 9351 7186; fax: +61 2 9351 5049. E-mail address: sians@health.usyd.edu.au (S.K. Smith). Contents lists available at ScienceDirect Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou 0738-3991/$ – see front matter ß 2009 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2009.01.012