A decision aid to support informed choices about bowel cancer screening among adults with low education: randomised controlled trial

Sian K Smith, Lyndal Trevena, Judy M Simpson, Alexandra Barratt, Don Nutbeam, Kirsten J McCaffery, Sian K Smith, Lyndal Trevena, Judy M Simpson, Alexandra Barratt, Don Nutbeam, Kirsten J McCaffery

Abstract

Objective: To determine whether a decision aid designed for adults with low education and literacy can support informed choice and involvement in decisions about screening for bowel cancer.

Design: Randomised controlled trial.

Setting: Areas in New South Wales, Australia identified as socioeconomically disadvantaged (low education attainment, high unemployment, and unskilled occupations).

Participants: 572 adults aged between 55 and 64 with low educational attainment, eligible for bowel cancer screening.

Intervention: Patient decision aid comprising a paper based interactive booklet (with and without a question prompt list) and a DVD, presenting quantitative risk information on the possible outcomes of screening using faecal occult blood testing compared with no testing. The control group received standard information developed for the Australian national bowel screening programme. All materials and a faecal occult blood test kit were posted directly to people's homes.

Main outcome measures: Informed choice (adequate knowledge and consistency between attitudes and screening behaviour) and preferences for involvement in screening decisions.

Results: Participants who received the decision aid showed higher levels of knowledge than the controls; the mean score (maximum score 12) for the decision aid group was 6.50 (95% confidence interval 6.15 to 6.84) and for the control group was 4.10 (3.85 to 4.36; P<0.001). Attitudes towards screening were less positive in the decision aid group, with 51% of the participants expressing favourable attitudes compared with 65% of participants in the control group (14% difference, 95% confidence interval 5% to 23%; P=0.002). The participation rate for screening was reduced in the decision aid group: completion of faecal occult blood testing was 59% v 75% in the control group (16% difference, 8% to 24%; P=0.001). The decision aid increased the proportion of participants who made an informed choice, from 12% in the control group to 34% in the decision aid group (22% difference, 15% to 29%; P<0.001). More participants in the decision aid group had no decisional conflict about the screening decision compared with the controls (51% v 38%; P=0.02). The groups did not differ for general anxiety or worry about bowel cancer.

Conclusions: Tailored decision support information can be effective in supporting informed choices and greater involvement in decisions about faecal occult blood testing among adults with low levels of education, without increasing anxiety or worry about developing bowel cancer. Using a decision aid to make an informed choice may, however, lead to lower uptake of screening. Trial registration ClinicalTrials.gov NCT00765869 and Australian New Zealand Clinical Trials Registry 12608000011381.

Conflict of interest statement

Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare that all authors had: no financial support for the submitted work from anyone other than their employer; no financial relationships with commercial entities that might have an interest in the submitted work; and no non-financial interests that may be relevant to the submitted work.

Figures

https://www.ncbi.nlm.nih.gov/pmc/articles/instance/4787675/bin/smis762195.f1_default.jpg
Flow of participants through trial

References

    1. Australian Commission on Safety and Quality in Health Care. How we work—consumer engagement. 2009. .
    1. Agency for Healthcare Research and Quality. Mission statement and budget. 2009. .
    1. Department of Health (UK). National Health Service constitution. 2009. .
    1. Haynes R, Devereaux P, Guyatt C. Clinical expertise in the era of evidence-based medicine and patient choice. Evid Based Med 2002;7:36-8.
    1. Montori VM, Guyatt GH. Progress in evidence-based medicine. JAMA 2008;300:1814-6.
    1. O’Connor AM, Rostom A, Fiset V, Tetroe J, Entwistle V, Llewellyn-Thomas H, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ 1999;319:731-4.
    1. O’Connor AM, Bennett CL, Stacey D, Barry M, Col Nananda F, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2009;3:CD001431.
    1. DeWalt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP. Literacy and health outcomes. A systematic review of the literature. J Gen Intern Med 2004;19:1228-39.
    1. General Medical Council (UK). Consent guidance: patients and doctors making decisions together. 2008. .
    1. Sense about science. Making sense of screening. 2009. .
    1. Irwig L, McCaffery K, Salkeld G, Bossuyt P. Informed choice for screening: implications for evaluation. BMJ 2006;332:1148-50.
    1. Gotzsche PC, Hartling OJ, Nielsen M, Brodersen J, Jorgensen KJ. Breast screening: the facts—or maybe not. BMJ 2009;338:b86.
    1. Australian Institute of Health and Welfare. National Bowel Cancer Screening Program monitoring report. AIHW, 2007.
    1. Kinnersley P, Edwards A, Hood K, Ryan R, Prout H, Cadbury N, et al. Interventions before consultations to help patients address their information needs by encouraging question asking: systematic review. BMJ 2008;337:a485.
    1. Australian Bureau of Statistics. Information paper: census of population and housing—socio-economic indexes for areas, Australia 2001. Australian Government Publishing Service, 2003.
    1. National Health and Medical Research Council (Australia). Guidelines for the prevention, early detection and management of colorectal cancer. A guide for general practitioners. NHMRC, 2000.
    1. Austalian Bureau of Statistics. Adult literacy and life skills survey, summary results. ABS, 2006.
    1. Doak CC, Doak LG, Root JH. Teaching patients with low literacy skills. 2nd ed. Lippincott, 1996.
    1. Hibbard JH, Peters E. Supporting informed consumer health care decisions: data presentation approaches that facilitate the use of information in choice. Annu Rev Public Health 2003;24:413-33.
    1. Houts PS, Doak CC, Doak LG, Loscalzo MJ. The role of pictures in improving health communication: a review of research on attention, comprehension, recall, and adherence. Patient Educ Couns 2006;61:173-90.
    1. Smith SK, Trevena L, Barratt A, Dixon A, Nutbeam D, Simpson JM, et al. Development and preliminary evaluation of a bowel cancer screening decision aid for adults with lower literacy. Patient Educ Couns 2009;75:358-67.
    1. Smith SK, Trevena L, Nutbeam D, Barratt A, McCaffery KJ. Information needs and preferences of low and high literacy consumers for decisions about colorectal cancer screening: utilizing a linguistic model. Health Expect 2008;11:123-36.
    1. Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A, et al. The International Patient Decision Aids Standards Collaboration. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ 2006;333:417.
    1. Trevena L, Irwig L, Barratt A. Randomized trial of a self-administered decision aid for colorectal cancer screening. J Med Screen 2008;15:76-82.
    1. Marteau T, Dormandy E, Michie S. A measure of informed choice. Health Expect 2001;4:99-108.
    1. Michie S, Dormandy E, Marteau TM. The multi-dimensional measure of informed choice: a validation study. Patient Educ Couns 2002;48:87-91.
    1. Mathieu E, Barratt A, Davey H, McGeechan K, Howard K, Houssami N. Informed choice in mammography screening: a randomized trial of a decision aid for 70-year-old women. Arch Intern Med 2007;167:2039-46.
    1. Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nurs Res 1997;29:21-43.
    1. O’Connor AM. Decisional conflict scale—user manual. 2008. .
    1. Sainfort F, Booske BC. Measuring post-decision satisfaction. Med Decis Making 2000;20:51-61.
    1. O’Connor AM. Decision self efficacy scale—user manual.1995. .
    1. Marteau TM, Bekker H. The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). Br J Clin Psychol 1992;31:301-6.
    1. Sutton S, Bickler G, Sancho-Aldridge J, Saidi G. Prospective study of predictors of attendance for breast screening in inner London. J Epidemiol Community Health 1994;48:65-73.
    1. O’Connor AM. Acceptability tool—user manual.1996. .
    1. Young AF, Dobson AJ, Byles JE. Health services research using linked records: who consents and what is the gain? Aust N Z J Public Health 2001;25:417-20.
    1. Huang N, Shih S-F, Chang H-Y, Chou Y-J. Record linkage research and informed consent: who consents? BMC Health Serv Res 2007;7:18.
    1. Clement S, Ibrahim S, Crichton N, Wolf M, Rowlands G. Complex interventions to improve the health of people with limited literacy: a systematic review. Patient Educ Couns 2009;75:340-51.
    1. Crockett R, Wilkinson TM, Marteau TM. Social patterning of screening uptake and the impact of facilitating informed choices: psychological and ethical analyses. Health Care Anal 2008;16:17-30.
    1. Elwyn G, O’Connor A, Bennett C, Newcombe R, Politi M, Durand M, et al. Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi). PLoS One 2009;4:e4705.
    1. Bekker HL. The loss of reason in patient decision aid research: do checklists damage the quality of informed choice interventions? Patient Educ Couns 2010;78:357-64.
    1. Campbell N, Murray E, Darbyshire J, Emery J, Farmer A, Griffiths F, et al. Designing and evaluating complex interventions to improve health care. BMJ 2007;334:455-9.
    1. Wolf AM, Schorling JB. Does informed consent alter elderly patients’ preferences for colorectal cancer screening? Results of a randomized trial. J Gen Intern Med 2000;15:24-30.
    1. Dolan JG, Frisina S. Randomized controlled trial of a patient decision aid for colorectal cancer screening. Med Decis Making 2002;22:125-39.
    1. Griffith J, Fichter M, Fowler F, Lewis C, Pignone M. Should a colon cancer screening decision aid include the option of no testing? A comparative trial of two decision aids. BMC Med Inform Decis Mak 2008;8:10.
    1. Pignone M, Harris R, Kinsinger L. Videotape-based decision aid for colon cancer screening. A randomized, controlled trial. Ann Intern Med 2000;133:761-9.
    1. Malenka DJ, Baron JA, Johansen S. The framing effect of relative and absolute risk. J Gen Intern Med 1993;8:543-8.
    1. Gigerenzer G, Edwards A. Simple tools for understanding risks: from innumeracy to insight. BMJ 2003;327:741-4.
    1. Nelson WL, Han PKJ, Fagerlin A, Stefanek M, Ubel PA. Rethinking the objectives of decision aids: a call for conceptual clarity. Med Decis Making 2007;27:609-18.
    1. Bekker HL, Legare F, Stacey D, O’Connor A, Lemyre L. Is anxiety a suitable measure of decision aid effectiveness: a systematic review? Patient Educ Couns 2003;50:255-62.
    1. McCaffery K, Irwig L, Bossuyt P. Patient decision aids to support clinical decision making: evaluating the decision or the outcomes of the decision. Med Decis Making 2007;27:619-25.
    1. National Health and Hospitals Reform Commission (Australia). A healthier future for all Australians—final report of the National Health and Hospitals Reform Commission. 2009. .
    1. Department of Health (UK). NHS constitution: the NHS belongs to us all. 2009. .
    1. Raffle A. Information about screening—is it to achieve high uptake or to ensure informed choice? Health Expect 2001;4:92-8.
    1. Torgerson DJ, Donaldson C. An economic view of high compliance as a screening objective. BMJ 1994;308:117-9.
    1. Howard K, Salkeld G, Irwig L, Adelstein BA. High participation rates are not necessary for cost-effective colorectal cancer screening. J Med Screen 2005;12:96-102.
    1. Entwistle VA, Carter SM, Trevena L, Flitcroft K, Irwig L, McCaffery K, et al. Communicating about screening. BMJ 2008;337:a1591.
    1. Barnato AE, Llewellyn-Thomas HA, Peters EM, Siminoff L, Collins ED, Barry MJ. Communication and decision making in cancer care: setting research priorities for decision support/patients’ decision aids. Med Decis Making 2007;27:626-34.
    1. Harrison JD, Masya L, Butow P, Solomon M, Young J, Salkeld G, et al. Implementing patient decision support tools: moving beyond academia? Patient Educ Couns 2009;76:120-5.

Source: PubMed

스폰서 및 공동 작업자

건강 상태

약물 개입

3
구독하다