Development and preliminary evaluation of a bowel cancer screening decision aid for adults with lower literacy

Smith, Sian K; Trevena, Lyndal; Barratt, Alexandra; Dixon, Ann; Nutbeam, Don; Simpson, Judy M.; McCaffery, Kirsten

doi:10.1016/j.pec.2009.01.012

Cited by 35 publications

(38 citation statements)

References 32 publications

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“…Acceptability and utilisation of materials will be assessed by items measuring how women used and evaluated the booklets, as used successfully in previous decision aid trials 39 61…”

Section: Stream A: Quantitative Studymentioning

confidence: 99%

The effect of information about overdetection of breast cancer on women's decision-making about mammography screening: study protocol for a randomised controlled trial

et al. 2014

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IntroductionWomen are largely unaware that mammography screening can cause overdetection of inconsequential disease, leading to overdiagnosis and overtreatment of breast cancer. Evidence is lacking about how information on overdetection affects women's breast screening decisions and experiences. This study investigates the consequences of providing information about overdetection of breast cancer to women approaching the age of invitation to mammography screening.Methods and analysisThis is a randomised controlled trial with an embedded longitudinal qualitative substudy. Participants are a community sample of women aged 48–50 in New South Wales, Australia, recruited in 2014. Women are randomly allocated to either quantitative only follow-up (n=904) or additional qualitative follow-up (n=66). Women in each stream are then randomised to receive either the intervention (evidence-based information booklet including overdetection, breast cancer mortality reduction and false positives) or a control information booklet (including mortality reduction and false positives only). The primary outcome is informed choice about breast screening (adequate knowledge, and consistency between attitudes and intentions) assessed via telephone interview at 2 weeks postintervention. Secondary outcomes measured at this time include decision process (decisional conflict and confidence) and psychosocial outcomes (anticipated regret, anxiety, breast cancer worry and perceived risk). Women are further followed up at 6 months, 1 and 2 years to assess self-reported screening behaviour and long-term psychosocial outcomes (decision regret, quality of life). Participants in the qualitative stream undergo additional in-depth interviews at each time point to explore the views and experiences of women who do and do not choose to have screening.Ethics and disseminationThe study has ethical approval, and results will be published in peer-reviewed journals. This research will help ensure that information about overdetection may be communicated clearly and effectively, using an evidence-based approach, to women considering breast cancer screening.Trial registration numberAustralian New Zealand Clinical Trials Registry ACTRN12613001035718.

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“…Acceptability and utilisation of materials will be assessed by items measuring how women used and evaluated the booklets, as used successfully in previous decision aid trials 39 61…”

Section: Stream A: Quantitative Studymentioning

confidence: 99%

The effect of information about overdetection of breast cancer on women's decision-making about mammography screening: study protocol for a randomised controlled trial

et al. 2014

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“…As this issue had arisen with previous screening decision aids,19 27 our initial draft tried to address it by posing a question in the title (‘Should I…?’) and stating in the opening paragraph that the ‘booklet is designed to help you make an informed choice about whether you would prefer to have screening or not.’ However, findings from the first few interviews led us to strengthen this by adding ‘there is no right or wrong answer about whether to have breast screening. It is a matter of what you believe is the right choice for you.’ We also renamed the booklet ‘Breast cancer screening: It's your choice’ and modified the subtitle to include ‘information to help women make a decision’ rather than ‘information to consider’.…”

Section: Resultsmentioning

confidence: 99%

“…Stage 1 included the design of a decision aid informed by our focus group study,15 previous decision aid work18 19 and other relevant literature, followed by an iterative piloting and revision process involving user testing and expert feedback. Then we created a control decision aid omitting the overdetection content.…”

Section: Methodsmentioning

confidence: 99%

“…Participants had been told that they would receive one of two versions of the booklet, but they were not aware of how the versions differed or which was the intervention arm. Around 3 weeks later, a trained HVRF interviewer conducted a structured telephone interview (15–20 min) measuring decision aid acceptability using rating scales,19 26 knowledge using items adapted from previous work,15 26 and other trial outcomes17 that are beyond the scope of this paper.…”

Section: Methodsmentioning

confidence: 99%

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Overdetection in breast cancer screening: development and preliminary evaluation of a decision aid

et al. 2014

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ObjectiveTo develop, pilot and refine a decision aid (ahead of a randomised trial evaluation) for women around age 50 facing their initial decision about whether to undergo mammography screening.DesignTwo-stage mixed-method pilot study including qualitative interviews (n=15) and a randomised comparison using a quantitative survey (n=34).SettingNew South Wales, Australia.ParticipantsWomen aged 43–59 years with no personal history of breast cancer.InterventionsThe decision aid provides evidence-based information about important outcomes of mammography screening over 20 years (breast cancer mortality reduction, overdetection and false positives) compared with no screening. The information is presented in a short booklet for women, combining text and visual formats. A control version produced for the purposes of comparison omits the overdetection-related content.OutcomesComprehension of key decision aid content and acceptability of the materials.ResultsMost women considered the decision aid clear and helpful and would recommend it to others. Nonetheless, the piloting process raised important issues that we tried to address in iterative revisions. Some participants found it hard to understand overdetection and why it is of concern, while there was often confusion about the distinction between overdetection and false positives. In a screening context, encountering balanced information rather than persuasion appears to be contrary to people's expectations, but women appreciated the opportunity to become better informed.ConclusionsThe concept of overdetection is complex and new to the public. This study highlights some key challenges for communicating about this issue. It is important to clarify that overdetection differs from false positives in terms of its more serious consequences (overtreatment and associated harms). Screening decision aids also must clearly explain their purpose of facilitating informed choice. A staged approach to development and piloting of decision aids is recommended to further improve understanding of overdetection and support informed decision-making about screening.

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“…Smith et al 118,119 2 Whether or not to have screening for bowel cancer via faecal occult blood test (FOBT) screening every two years. Sorenson et al 120 1…”

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confidence: 99%

Design Features of Explicit Values Clarification Methods

et al. 2016

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Development and preliminary evaluation of a bowel cancer screening decision aid for adults with lower literacy

Cited by 35 publications

References 32 publications

The effect of information about overdetection of breast cancer on women's decision-making about mammography screening: study protocol for a randomised controlled trial

The effect of information about overdetection of breast cancer on women's decision-making about mammography screening: study protocol for a randomised controlled trial

Overdetection in breast cancer screening: development and preliminary evaluation of a decision aid

Design Features of Explicit Values Clarification Methods

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