Abstract
This paper defines risk and its component elements and describes where clinical practice may be starting from in terms of what is reported in the literature about understanding risks and the information requirements of consumers. It notes briefly how theoretical models in the literature contribute to our understanding by providing a basis from which to summarise current evidence about the effects of healthcare interventions which address risks and risk behaviour. The situations or types of interventions in which risk related interventions are most effective are described, but a significant caveat is noted about the types of outcomes which have been reported in the literature and which are most appropriate to evaluate. The effects of "framing" variations in the information given to consumers and the ethical dilemmas these raise for a debate about "informed choice" in healthcare programmes are discussed. In response to both the practical and ethical dilemmas that arise from the current evidence, some of the areas where attention should be focused in the future are outlined so that both health gain and informed choice might be achieved. These include the use of decision aids, although their implementation is not widespread at present. Lessons from the current literature on how further progress can be made towards improved communication, discussion between professionals and consumers, and enhancing informed choice are discussed.
Key Words: patient preference; risk; informed choice; decision making; patient-caregiver communication
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Selected References
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- Bernstein Steven J., Skarupski Kimberly A., Grayson Carla E., Starling Mark R., Bates Eric R., Eagle Kim A. A randomized controlled trial of information-giving to patients referred for coronary angiography: effects on outcomes of care. Health Expect. 1998 Jun;1(1):50–61. doi: 10.1046/j.1369-6513.1998.00007.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bryant G. D., Norman G. R. Expressions of probability: words and numbers. N Engl J Med. 1980 Feb 14;302(7):411–411. doi: 10.1056/NEJM198002143020718. [DOI] [PubMed] [Google Scholar]
- Davison B. J., Degner L. F. Empowerment of men newly diagnosed with prostate cancer. Cancer Nurs. 1997 Jun;20(3):187–196. doi: 10.1097/00002820-199706000-00004. [DOI] [PubMed] [Google Scholar]
- Doyal L. Informed consent: moral necessity or illusion? Qual Health Care. 2001 Sep;10 (Suppl 1):i29–i33. doi: 10.1136/qhc.0100029... [DOI] [PMC free article] [PubMed] [Google Scholar]
- Dudley N. Importance of risk communication and decision making in cardiovascular conditions in older patients: a discussion paper. Qual Health Care. 2001 Sep;10 (Suppl 1):i19–i22. doi: 10.1136/qhc.0100019... [DOI] [PMC free article] [PubMed] [Google Scholar]
- Edwards A., Elwyn G., Covey J., Matthews E., Pill R. Presenting risk information--a review of the effects of "framing" and other manipulations on patient outcomes. J Health Commun. 2001 Jan-Mar;6(1):61–82. doi: 10.1080/10810730150501413. [DOI] [PubMed] [Google Scholar]
- Edwards A., Elwyn G. How should effectiveness of risk communication to aid patients' decisions be judged? A review of the literature. Med Decis Making. 1999 Oct-Dec;19(4):428–434. doi: 10.1177/0272989X9901900411. [DOI] [PubMed] [Google Scholar]
- Edwards A., Elwyn G., Stott N. Communicating risk reductions. Researchers should present results with both relative and absolute risks. BMJ. 1999 Feb 27;318(7183):603–604. [PubMed] [Google Scholar]
- Edwards A., Hood K., Matthews E., Russell D., Russell I., Barker J., Bloor M., Burnard P., Covey J., Pill R. The effectiveness of one-to-one risk communication interventions in health care: a systematic review. Med Decis Making. 2000 Jul-Sep;20(3):290–297. doi: 10.1177/0272989X0002000305. [DOI] [PubMed] [Google Scholar]
- Edwards A., Matthews E., Pill R., Bloor M. Communication about risk: diversity among primary care professionals. Fam Pract. 1998 Aug;15(4):296–300. doi: 10.1093/fampra/15.4.296. [DOI] [PubMed] [Google Scholar]
- Edwards A., Matthews E., Pill R., Bloor M. Communication about risk: the responses of primary care professionals to standardizing the 'language of risk' and communication tools. Fam Pract. 1998 Aug;15(4):301–307. doi: 10.1093/fampra/15.4.301. [DOI] [PubMed] [Google Scholar]
- Edwards A., Pill R., Stott N. Communicating risk. Use of standard terms is unlikely to result in standard communication. BMJ. 1996 Dec 7;313(7070):1483–1483. doi: 10.1136/bmj.313.7070.1483. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Elwyn G., Edwards A., Gwyn R., Grol R. Towards a feasible model for shared decision making: focus group study with general practice registrars. BMJ. 1999 Sep 18;319(7212):753–756. doi: 10.1136/bmj.319.7212.753. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Elwyn G., Edwards A., Kinnersley P. Shared decision-making in primary care: the neglected second half of the consultation. Br J Gen Pract. 1999 Jun;49(443):477–482. [PMC free article] [PubMed] [Google Scholar]
- Freeman T. R., Bass M. J. Risk language preferred by mothers in considering a hypothetical new vaccine for their children. CMAJ. 1992 Oct 1;147(7):1013–1017. [PMC free article] [PubMed] [Google Scholar]
- Frets P. G., Niermeijer M. F. Reproductive planning after genetic counselling: a perspective from the last decade. Clin Genet. 1990 Oct;38(4):295–306. doi: 10.1111/j.1399-0004.1990.tb03584.x. [DOI] [PubMed] [Google Scholar]
- Gail M. H., Brinton L. A., Byar D. P., Corle D. K., Green S. B., Schairer C., Mulvihill J. J. Projecting individualized probabilities of developing breast cancer for white females who are being examined annually. J Natl Cancer Inst. 1989 Dec 20;81(24):1879–1886. doi: 10.1093/jnci/81.24.1879. [DOI] [PubMed] [Google Scholar]
- Greenhalgh T. Narrative based medicine: narrative based medicine in an evidence based world. BMJ. 1999 Jan 30;318(7179):323–325. doi: 10.1136/bmj.318.7179.323. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holmes-Rovner M., Kroll J., Rovner D. R., Schmitt N., Rothert M., Padonu G., Talarczyk G. Patient decision support intervention: increased consistency with decision analytic models. Med Care. 1999 Mar;37(3):270–284. doi: 10.1097/00005650-199903000-00007. [DOI] [PubMed] [Google Scholar]
- Holmes-Rovner Margaret, Valade Diane, Orlowski Catherine, Draus Catherine, Nabozny-Valerio Barbara, Keiser Susan. Implementing shared decision-making in routine practice: barriers and opportunities. Health Expect. 2000 Sep;3(3):182–191. doi: 10.1046/j.1369-6513.2000.00093.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Hux J. E., Naylor C. D. Communicating the benefits of chronic preventive therapy: does the format of efficacy data determine patients' acceptance of treatment? Med Decis Making. 1995 Apr-Jun;15(2):152–157. doi: 10.1177/0272989X9501500208. [DOI] [PubMed] [Google Scholar]
- Jacoby A., Baker G., Chadwick D., Johnson A. The impact of counselling with a practical statistical model on patients' decision-making about treatment for epilepsy: findings from a pilot study. Epilepsy Res. 1993 Dec;16(3):207–214. doi: 10.1016/0920-1211(93)90081-h. [DOI] [PubMed] [Google Scholar]
- Lerman C., Biesecker B., Benkendorf J. L., Kerner J., Gomez-Caminero A., Hughes C., Reed M. M. Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst. 1997 Jan 15;89(2):148–157. doi: 10.1093/jnci/89.2.148. [DOI] [PubMed] [Google Scholar]
- Liao L., Jollis J. G., DeLong E. R., Peterson E. D., Morris K. G., Mark D. B. Impact of an interactive video on decision making of patients with ischemic heart disease. J Gen Intern Med. 1996 Jun;11(6):373–376. doi: 10.1007/BF02600051. [DOI] [PubMed] [Google Scholar]
- Llewellyn-Thomas H. A. Patients' health-care decision making: a framework for descriptive and experimental investigations. Med Decis Making. 1995 Apr-Jun;15(2):101–106. doi: 10.1177/0272989X9501500201. [DOI] [PubMed] [Google Scholar]
- Lloyd A. J. The extent of patients' understanding of the risk of treatments. Qual Health Care. 2001 Sep;10 (Suppl 1):i14–i18. doi: 10.1136/qhc.0100014... [DOI] [PMC free article] [PubMed] [Google Scholar]
- Makoul G., Arntson P., Schofield T. Health promotion in primary care: physician-patient communication and decision making about prescription medications. Soc Sci Med. 1995 Nov;41(9):1241–1254. doi: 10.1016/0277-9536(95)00061-b. [DOI] [PubMed] [Google Scholar]
- Man-Son-Hing M., Laupacis A., O'Connor A. M., Biggs J., Drake E., Yetisir E., Hart R. G. A patient decision aid regarding antithrombotic therapy for stroke prevention in atrial fibrillation: a randomized controlled trial. JAMA. 1999 Aug 25;282(8):737–743. doi: 10.1001/jama.282.8.737. [DOI] [PubMed] [Google Scholar]
- Mazur D. J., Hickam D. H. Interpretation of graphic data by patients in a general medicine clinic. J Gen Intern Med. 1990 Sep-Oct;5(5):402–405. doi: 10.1007/BF02599425. [DOI] [PubMed] [Google Scholar]
- Mazur D. J. Information disclosure and beyond: how do patients understand and use the information they report they want? Med Decis Making. 2000 Jan-Mar;20(1):132–134. doi: 10.1177/0272989X0002000117. [DOI] [PubMed] [Google Scholar]
- Mazur D. J., Merz J. F. Patients' interpretations of verbal expressions of probability: implications for securing informed consent to medical interventions. Behav Sci Law. 1994 Autumn;12(4):417–426. doi: 10.1002/bsl.2370120410. [DOI] [PubMed] [Google Scholar]
- O'Connor A. M., Rostom A., Fiset V., Tetroe J., Entwistle V., Llewellyn-Thomas H., Holmes-Rovner M., Barry M., Jones J. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ. 1999 Sep 18;319(7212):731–734. doi: 10.1136/bmj.319.7212.731. [DOI] [PMC free article] [PubMed] [Google Scholar]
- O'Connor A. M., Tugwell P., Wells G. A., Elmslie T., Jolly E., Hollingworth G., McPherson R., Drake E., Hopman W., Mackenzie T. Randomized trial of a portable, self-administered decision aid for postmenopausal women considering long-term preventive hormone therapy. Med Decis Making. 1998 Jul-Sep;18(3):295–303. doi: 10.1177/0272989X9801800307. [DOI] [PubMed] [Google Scholar]
- O'Connor A. M. Validation of a decisional conflict scale. Med Decis Making. 1995 Jan-Mar;15(1):25–30. doi: 10.1177/0272989X9501500105. [DOI] [PubMed] [Google Scholar]
- Prochaska J. O., DiClemente C. C. Stages of change in the modification of problem behaviors. Prog Behav Modif. 1992;28:183–218. [PubMed] [Google Scholar]
- Protheroe J., Fahey T., Montgomery A. A., Peters T. J. The impact of patients' preferences on the treatment of atrial fibrillation: observational study of patient based decision analysis. BMJ. 2000 May 20;320(7246):1380–1384. doi: 10.1136/bmj.320.7246.1380. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Rembold C. M. Number needed to screen: development of a statistic for disease screening. BMJ. 1998 Aug 1;317(7154):307–312. doi: 10.1136/bmj.317.7154.307. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Richards T. Partnership with patients. BMJ. 1998 Jan 10;316(7125):85–86. doi: 10.1136/bmj.316.7125.85. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Robinson A., Thomson R. Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools. Qual Health Care. 2001 Sep;10 (Suppl 1):i34–i38. doi: 10.1136/qhc.0100034... [DOI] [PMC free article] [PubMed] [Google Scholar]
- Sarfati D., Howden-Chapman P., Woodward A., Salmond C. Does the frame affect the picture? A study into how attitudes to screening for cancer are affected by the way benefits are expressed. J Med Screen. 1998;5(3):137–140. doi: 10.1136/jms.5.3.137. [DOI] [PubMed] [Google Scholar]
- Sawka Carol A., Goel Vivek, Mahut Catherine A., Taylor Glen A., Thiel Elaine C., O'Connor Annette M., Ackerman Ida, Burt Janet H., Gort Elaine H. Development of a patient decision aid for choice of surgical treatment for breast cancer. Health Expect. 1998 Jun;1(1):23–36. doi: 10.1046/j.1369-6513.1998.00003.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Shaw N. J., Dear P. R. How do parents of babies interpret qualitative expressions of probability? Arch Dis Child. 1990 May;65(5):520–523. doi: 10.1136/adc.65.5.520. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Shiloh S., Sagi M. Effect of framing on the perception of genetic recurrence risks. Am J Med Genet. 1989 May;33(1):130–135. doi: 10.1002/ajmg.1320330121. [DOI] [PubMed] [Google Scholar]
- Skolbekken J. A. Communicating the risk reduction achieved by cholesterol reducing drugs. BMJ. 1998 Jun 27;316(7149):1956–1958. doi: 10.1136/bmj.316.7149.1956. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Street R. L., Jr, Van Order A., Bramson R., Manning T. Preconsultation education promoting breast cancer screening: does the choice of media make a difference? J Cancer Educ. 1998 Fall;13(3):152–161. doi: 10.1080/08858199809528537. [DOI] [PubMed] [Google Scholar]
- Whelan T. J., Levine M. N., Gafni A., Lukka H., Mohide E. A., Patel M., Streiner D. L. Breast irradiation postlumpectomy: development and evaluation of a decision instrument. J Clin Oncol. 1995 Apr;13(4):847–853. doi: 10.1200/JCO.1995.13.4.847. [DOI] [PubMed] [Google Scholar]
- Wilson P. W., D'Agostino R. B., Levy D., Belanger A. M., Silbershatz H., Kannel W. B. Prediction of coronary heart disease using risk factor categories. Circulation. 1998 May 12;97(18):1837–1847. doi: 10.1161/01.cir.97.18.1837. [DOI] [PubMed] [Google Scholar]
- Woloshin K. K., Ruffin M. T., 4th, Gorenflo D. W. Patients' interpretation of qualitative probability statements. Arch Fam Med. 1994 Nov;3(11):961–966. doi: 10.1001/archfami.3.11.961. [DOI] [PubMed] [Google Scholar]
