Decision making in oncology: A review of patient decision aids to support patient participation

CA Cancer Journal for Clinicians

Volumn 58, Issue 5, 2008, Pages 293-304

  Stacey, Dawn ^a   Samant, Rajiv ^a,b   Bennett, Carol ^c  

^a UNIVERSITY OF OTTAWA   (Canada)

^b OTTAWA REGIONAL CANCER CENTRE   (Canada)

^c OTTAWA HOSPITAL RESEARCH INSTITUTE   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

CANCER PATIENT; CANCER SCREENING; CONSULTATION; DECISION MAKING; DOCTOR PATIENT RELATION; HEALTH CARE PERSONNEL; HEALTH PRACTITIONER; HUMAN; MEDICAL PRACTICE; NURSE; ONCOLOGY; PATIENT PARTICIPATION; PHYSICIAN; PRIORITY JOURNAL; REVIEW; SYSTEMATIC REVIEW; TRAINING;

DECISION MAKING; DECISION SUPPORT TECHNIQUES; HUMANS; NEOPLASMS; PATIENT PARTICIPATION;

EID: 53149118976     PISSN: 00079235     EISSN: 15424863     Source Type: Journal    
DOI: 10.3322/CA.2008.0006     Document Type: Review

References (84)

1. Wennberg JE. Unwarranted variations in healthcare delivery: implications for academic medical centres. BMJ 2002;325:961-964.
2. O'Connor AM, Drake ER, Wells GA, et al. A survey of the decision-making needs of Canadians faced with complex health decisions. Health Expect 2003;6:97-109.
3. Elwyn G, O'Connor A, Stacey D, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ 2006;333:417.
4. Sepucha KR, Fowler FJ Jr, Mulley AG Jr. Policy support for patient-centered care: the need for measurable improvements in decision quality. Health Aff (Millwood) 2004;Suppl Web Exclusives: VAR54-VAR62.
5. Ratliff A, Angell M, Dow RW, et al. What is a good decision? Eff Clin Pract 1999;2:185-197.
6. Guimond P, Bunn H, O'Connor AM, et al. Validation of a tool to assess health practitioners' decision support and communication skills. Patient Educ Couns 2003;50:235-245.
7. Elwyn G, Hutchings H, Edwards A, et al. The OPTION scale: measuring the extent that clinicians involve patients in decision-making tasks. Health Expect 2005;8:34-42.
8. Loh A, Simon D, Hennig K, et al. The assessment of depressive patients' involvement in decision making in audio-taped primary care consultations. Patient Educ Couns 2006;63:314-318.
9. Stevenson FA, Cox K, Britten N, Dundar Y. A systematic review of the research on communication between patients and health care professionals about medicines: the consequences for concordance. Health Expect 2004;7:235-245.
10. O'Connor AM, Bennett C, Stacey D, et al. Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and meta-analysis. Med Decis Making 2007;27:554-574.
11. Edwards A, Elwyn G. Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision. Health Expect 2006;9:307-320.
12. Committee on Quality of Health Care in America, Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: Institute of Medicine; 2001.
13. Registered Nurses' Association of Ontario. Client Centred Care. 2006. Available at : http://www.rnao.org/Page.asp?PageID=924&ContentID=798. Accessed April 25, 2008.
14. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681-692.
15. Mazur DJ. What should patients be told prior to a medical procedure? Ethical and legal perspectives on medical informed consent. Am J Med 1986;81:1051-1054.
16. Schultz EA. Informed consent: an overview. CRNA 1998;9:2-9.
17. Government of Ontario, Canada. Health Care Consent Act, 1996, S.O. 1996, c. 2, Sch. A.
18. Holmes-Rovner M, Wills CE. Improving informed consent: insights from behavioral decision research. Med Care 2002;40(suppl):V30-V38.
19. Magee M. Relationship-based health care in the United States, United Kingdom, Canada, Germany, South Africa, and Japan: a comparative study of patient and physician perceptions worldwide. Paper presented at: World Medical Association General Assembly; 2003; Helsinki, Finland.
20. Coulter A, Jenkinson C. European patients' views on the responsiveness of health systems and healthcare providers. Eur J Public Health 2005;15:355-360.
21. Davison BJ, Gleave ME, Goldenberg SL, et al. Assessing information and decision preferences of men with prostate cancer and their partners. Cancer Nurs 2002;25:42-49.
22. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional preferences in women with breast cancer. JAMA 1997;277:1485-1492.
23. Hack TF, Degner LF, Watson P, Sinha L. Do patients benefit from participating in medical decision making? Longitudinal follow-up of women with breast cancer. Psychooncology 2006;15:9-19.
24. Street RL Jr, Voigt B. Patient participation in deciding breast cancer treatment and subsequent quality of life. Med Decis Making 1997;17:298-306.
25. Providing high quality, affordable health care to Washingtonians based on the recommendations of the blue ribbon commission on health care costs and access, SB 5930, Washington State (2007).
26. Bruera E, Willey JS, Palmer JL, Rosales M. Treatment decisions for breast carcinoma: patient preferences and physician perceptions. Cancer 2002;94:2076-2080.
27. Bruera E, Sweeney C, Calder K, et al. Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol 2001;19:2883-2885.
28. Mazur DJ, Hickam DH. Patients' preferences for risk disclosure and role in decision making for invasive medical procedures. J Gen Intern Med 1997;12:114-117.
29. Brown RF, Butow PN, Henman M, et al. Responding to the active and passive patient: flexibility is the key. Health Expect 2002;5:236-245.
30. Towle A, Godolphin W. Framework for teaching and learning informed shared decision making. BMJ 1999;319:766-771.
31. Elwyn G, Charles C. Shared decision making: the principles and the competences, in Edwards A, Elwyn G (eds). Evidence-based Patient Choice. Inevitable or Impossible? Oxford, UK: Oxford University Press; 2001:118-143.
32. Gravel K, Légaré F, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals' perceptions. Implement Sci 2006;1:16.
33. Butow P, Harrison JD, Choy ET, et al. Health professional and consumer views on involving breast cancer patients in the multidisciplinary discussion of their disease and treatment plan. Cancer 2007;110:1937-1944.
34. Elkin EB, Kim SH, Casper ES, et al. Desire for information and involvement in treatment decisions: elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol 2007;25:5275-5280.
35. Kleeberg UR, Feyer P, Günther W, Behrens M. Patient satisfaction in outpatient cancer care: a prospective survey using The PASQOC(R) questionnaire. Support Care Cancer 2008 Jan 17;[Epub ahead of print] PMID: 18322707.
36. Fowler FJ Jr, McNaughton Collins M, Albertsen PC, et al. Comparison of recommendations by urologists and radiation oncologists for treatment of clinically localized prostate cancer. JAMA 2000;283:3217-3222.
37. O'Connor AM. Validation of a decisional conflict scale. Med Decis Making 1995;15:25-30.
38. Sun Q. Predicting Downstream Effects of High Decisional Conflict: Meta-analysis of the Decisional Conflict Scale [master's thesis]. Ottawa, Ontario: University of Ottawa; 2004.
39. Gattellari M, Ward JE. Men's reactions to disclosed and undisclosed opportunistic PSA screening for prostate cancer. Med J Aust 2005;182:386-389.
40. O'Connor AM. Predicting downstream effects of high decisional conflict. Presented at: 3rd International Shared Decision Making Conference; June 2005; Ottawa, Canada.
41. Collins D, Sepucha K, O'Connor A, et al. Can women with early stage breast cancer make an informed choice for mastectomy? Presented at: 4th International Shared Decision Making Conference; May 2007; Freiburg, Germany.
42. Murray MA, O'Connor AM, Fiset V, Viola R. Women's decision-making needs regarding place of care at end of life. J Palliat Care 2003;19:176-184.
43. Fiset V, O'Connor AM, Evans W, et al. Development and evaluation of a decision aid for patients with stage IV non-small cell lung cancer. Health Expect 2000;3:125-136.
44. Kinnersley P, Edwards A, Hood K, et al. Interventions before consultations for helping patients address their information needs. Cochrane Database Syst Rev 2007;3:CD004565.
45. Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: a systematic review. Soc Sci Med 2005;61:2252-2264.
46. Clayton JM, Butow PN, Tattersall MH, et al. Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. J Clin Oncol 2007;25:715-723.
47. Sepucha KR, Belkora JK, Aviv C, et al. Improving the quality of decision making in breast cancer: consultation planning template and consultation recording template. Oncol Nurs Forum 2003;30:99-106.
48. Belkora J, Katapodi M, Moore D, et al. Evaluation of a visit preparation intervention implemented in two rural, underserved counties of Northern California. Patient Educ Couns 2006;64:350-359.
49. Sepucha KR, Belkora JK, Mutchnick S, Esserman LJ. Consultation planning to help breast cancer patients prepare for medical consultations: effect on communication and satisfaction for patients and physicians. J Clin Oncol 2002;20:2695-2700.
50. O'Connor AM, Rostom A, Fiset V, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ 1999;319:731-734.
51. Goel V, Sawka CA, Thiel EC, et al. Randomized trial of a patient decision aid for choice of surgical treatment for breast cancer. Med Decis Making 2001;21:1-6.
52. Street RL Jr, Voigt B, Geyer C Jr, et al. Increasing patient involvement in choosing treatment for early breast cancer. Cancer 1995;76:2275-2285.
53. Whelan T, Levine M, Willan A, et al. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA 2004;292:435-441.
54. Green MJ, Biesecker BB, McInerney AM, et al. An interactive computer program can effectively educate patients about genetic testing for breast cancer susceptibility. Am J Med Genet 2001;103:16-23.
55. Green MJ, Peterson SK, Baker MW, et al. Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: a randomized controlled trial. JAMA 2004;292:442-452.
56. Lerman C, Biesecker B, Benkendorf JL, et al. Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst 1997;89:148-157.
57. Miller SM, Fleisher L, Roussi P, et al. Facilitating informed decision making about breast cancer risk and genetic counseling among women calling the NCI's Cancer Information Service. J Health Commun 2005;10(suppl):119-136.
58. Schwartz MD, Benkendorf J, Lerman C, et al. Impact of educational print materials on knowledge, attitudes, and interest in BRCA1/BRCA2: testing among Ashkenazi Jewish women. Cancer 2001;92:932-940.
59. van Roosmalen MS, Stalmeier PF, Verhoef LC, et al. Randomized trial of a shared decision-making intervention consisting of trade-offs and individualized treatment information for BRCA1/2 mutation carriers. J Clin Oncol 2004;22:3293-3301.
60. Whelan T, Sawka C, Levine M, et al. Helping patients make informed choices: a randomized trial of a decision aid for adjuvant chemotherapy in lymph node-negative breast cancer. J Natl Cancer Inst 2003;95:581-587.
61. Dolan JG, Frisina S. Randomized controlled trial of a patient decision aid for colorectal cancer screening. Med Decis Making 2002;22:125-139.
62. Pignone M, Harris R, Kinsinger L. Videotape-based decision aid for colon cancer screening. A randomized, controlled trial. Ann Intern Med 2000;133:761-769.
63. 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.
64. Auvinen A, Hakama M, Ala-Opas M, et al. A randomized trial of choice of treatment in prostate cancer: the effect of intervention on the treatment chosen. BJU Int 2004;93:52-56.
65. Davison BJ, Degner LF. Empowerment of men newly diagnosed with prostate cancer. Cancer Nurs 1997;20:187-196.
66. Frosch DL, Kaplan RM, Felitti V. The evaluation of two methods to facilitate shared decision making for men considering the prostate-specific antigen test. J Gen Intern Med 2001;16:391-398.
67. Gattellari M, Ward JE. Does evidence-based information about screening for prostate cancer enhance consumer decision-making? A randomised controlled trial. J Med Screen 2003;10:27-39.
68. Gattellari M, Ward JE. A community-based randomised controlled trial of three different educational resources for men about prostate cancer screening. Patient Educ Couns 2005;57:168-182.
69. Myers RE, Daskalakis C, Cocroft J, et al. Preparing African-American men in community primary care practices to decide whether or not to have prostate cancer screening. J Natl Med Assoc 2005;97:1143-1154.
70. Partin MR, Nelson D, Radosevich D, et al. Randomized trial examining the effect of two prostate cancer screening educational interventions on patient knowledge, preferences, and behaviors. J Gen Intern Med 2004;19:835-842.
71. Schapira MM, VanRuiswyk J. The effect of an illustrated pamphlet decision-aid on the use of prostate cancer screening tests. J Fam Pract 2000;49:418-424.
72. Volk RJ, Cass AR, Spann SJ. A randomized controlled trial of shared decision making for prostate cancer screening. Arch Fam Med 1999;8:333-340.
73. Wolf AM, Nasser JF, Wolf AM, Schorling JB. The impact of informed consent on patient interest in prostate-specific antigen screening. Arch Intern Med 1996;156:1333-1336.
74. Stacey D, Murray MA, Légaré F, et al. Decision coaching to support shared decision making: a framework, evidence, and implications for nursing practice, education, and policy. Worldviews Evid Based Nurs 2008;5:25-35.
75. Kennedy AD, Sculpher MJ, Coulter A, et al. Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled tr ial. JAMA 2002;288:2701-2708.
76. Wirrmann E, Askham J. Implementing Patient Decision Aids in Urology. Oxford, UK: Picker Institute Europe; 2006.
77. Graham ID, Logan J. Innovations in knowledge transfer and continuity of care. Can J Nurs Res 2004;36:89-103.
78. Stacey D, O'Connor A. Cochrane Inventory of Existing Patient Decision Aids Identified Using Cochrane Review Methods. Available at: http://decisionaid.ohri.ca/index.html. Accessed April 25, 2008.
79. O'Connor AM, Wennberg JE, Légaré F, et al. Toward the 'tipping point': decision aids and informed patient choice. Health Aff (Millwood) 2007;26:716-725.
80. Silvia KA, Sepucha KR. Decision aids in routine practice: lessons from the breast cancer initiative. Health Expect 2006;9:255-264.
81. Kearing S, O'Connor AM, Collins D, et al. Psychometric properties of a 10-item decisional conflict scale in a cohort of newly diagnosed breast cancer patients. Presented at: Society for Medical Decision Making Annual Conference; October 2006; Boston, MA.
82. Brackett CD, Cochran N, Coutermarsh M, et al. Assessing quality of the PSA screening decision: integrating shared decision making into primary care. Presented at: 30th Annual Meeting of the Society of General Internal Medicine; April 2007; Toronto, Canada.
83. Brooks B, Brackett C, Cochran N, Coutermarsh M. Integrating cancer screening decision aids into primary care: results of a pilot study. Presented at: Society for Medical Decision Meeting Annual Conference; October 2006; Boston, MA.
84. Jibaja-Weiss ML, Volk RJ, Granch TS, et al. Entertainment education for informed breast cancer treatment decisions in low-literate women: development and initial evaluation of a patient decision aid. J Cancer Educ 2006;21:133-139.