OHRI Patient Decision Aids
Ottawa Hospital Research Institute - Patient Decision Aids
 
 
Patient Decision Aids
Development Toolkit
 • Conceptual Framework
 • Development Methods
 • Evaluation Measures
 • International Standards
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Development Methods

What are the Ottawa Decision Aids?

Our decision tools prepare people to discuss their options with professionals by:

  • informing them about the health condition, options and possible outcomes of options using the latest quality-rated scientific evidence;
  • creating realistic expectations by using diagrams that show our best scientific estimate of what happens to 100-1000 people like them;
  • clarifying the personal value or importance of the benefits and risks or side effects of options;
  • guiding people to deliberate about options and to communicate on a personal worksheet their: a) knowledge of options; b) personal values; c) current leaning toward options; d) unresolved decisional needs; and e) next steps;
  • using plain language written at a grade 8 level or less (evaluated using readability software).

Ottawa decision aids that are:

How are they developed?

Development of the Ottawa decision aids is based on a conceptual framework (Ottawa Decision Support Framework) and has been updated to meet the 2005 International Patient Decision Aid Standards (IPDAS).



IPDAS Criteria

I. Content: Does the patient decision aid ...
Provide information about options in sufficient detail for decision making?
  describe the health condition 2.1Yes
  list the options 2.2Yes
  list the option of doing nothing 2.3Yes
  describe the natural course without options 2.4Yes
  describe procedures 2.5Yes
  describe positive features [benefits] 2.6Yes
  describe negative features of options [harms / side effects / disadvantages] 2.7Yes
  include chances of positive / negative outcomes 2.8Yes
Additional items for tests
  describe what test is designed to measure 2.9NA
  include chances of true positive, true negative, false positive, false negative test results 2.10NA
  describe possible next steps based on test result 2.11NA
  include chances the disease is found with / without screening 2.12NA
  describe detection / treatment that would never have caused problems if one was not screened 2.13NA
Present probabilities of outcomes in an unbiased and understandable way?
  use event rates specifying the population and time period 3.1Yes
  compare outcome probabilities using the same denominator, time period, scale 3.2, 3.3, 3.6Yes
  describe uncertainty around probabilities 3.4Yes
  use visual diagrams 3.5Yes
  use multiple methods to view probabilities [words, numbers, diagrams] 3.7Yes
  allows the patient to select a way of viewing probabilities [words, numbers, diagrams] 3.8Yes
  allow patient to view probabilities based on their own situation 3.9Yes
  place probabilities in context of other events 3.10Yes
  use both positive and negative frames 3.13Yes
Include methods for clarifying and expressing patients' values?
  describe the procedures and outcomes to help patients imagine what it is like to experience their physical, emotional, social effects 4.1Yes
  ask patients to consider which positive and negative features matter most 4.2Yes
  suggest ways for patients to share what matters most with others 4.3Yes
Include structured guidance in deliberation and communication?
  provide steps to make a decision 6.1Yes
  suggest ways to talk about the decision with a health professional 6.2Yes
  include tools [worksheet, question list] to discuss options with others 6.3Yes
II. Development Process: Does the patient decision aid ...
Present information in a balanced manner?
  able to compare positive / negative features of options 9.1Yes
  shows negative / positive features with equal detail [fonts, order, display of statistics] 9.2Yes
Have a systematic development process?
  includes developers' credentials / qualifications 1.1Yes
  finds out what users [patients, practitioners] need to discuss options 1.2, 1.3Yes
  has peer review by patient / professional experts not involved in development and field testing 1.8bYes
  is field tested with users [patients facing the decision; practitioners presenting options] 1.4, 1.5Yes
The field tests with users [patients, practitioners] show the patient decision aid is:
  acceptable 1.6, 1.7Yes
  balanced for undecided patients 9.3Yes
  understood by those with limited reading skills 10.6Yes
Use up to date scientific evidence that is cited in a reference section or technical document?
  provides references to evidence used 11.1Yes
  report steps to find, appraise, summarise evidence 11.2Yes
  report date of last update 11.3Yes
  report how often patient decision aid is updated 11.4Yes
  describe quality of scientific evidence [including lack of evidence] 11.5bYes
  uses evidence from studies of patients similar to those of target audience 11.6Yes
Disclose conflicts of interest?
  report source of funding to develop and distribute the patient decision aid 7.1, 7.2Yes
  report whether authors or their affiliations stand to gain or lose by choices patients make after using the patient decision aid 7.3, 7.4Yes
Use plain language?
  is written at a level that can be understood by the majority of patients in the target group 10.3Yes
  is written at a grade 8 equivalent level or less according to readability score [SMOG or FRY] 10.4Yes
  provides ways to help patients understand information other than reading [audio, video, in-person discussion] 10.5Yes
Meet additional criteria if the patient decision aid is Internet based
  provide a step-by-step way to move through the web pages 8.1NA
  allow patients to search for key words 8.2NA
  provide feedback on personal health information that is entered into the patient decision aid 8.3NA
  provides security for personal health information entered into the decision aid 8.4NA
  make it easy for patients to return to the decision aid after linking to other web pages 8.5NA
  permit printing as a single document 8.6NA
Meet additional criteria if stories are used in the patient decision aid
  use stories that represent a range of positive and negative experiences 5.2NA
  state in an accessible document that the patient gave informed consent to use their stories 5.5NA
  reports if there was a financial or other reason why patients decided to share their story 7.5NA
III. Effectiveness: Does the patient decision aid ensure decision making is informed and values base
Decision processes leading to decision quality. The patient decision aid helps patients to ...
  recognise a decision needs to be made 12.1In progress
  know options and their features 12.2. 12.3Yes
  understand that values affect decision 12.4Yes
  be clear about option features that matter most 12.5Yes
  discuss values with their practitioner 12.6Yes
  become involved in preferred ways 12.7In progress
Decision quality. The patient decision aid ...
  improves the match between the chosen option and the features that matter most to the informed patient 12.8Yes


Note: small grey numbers behind above items correspond to endorsed criteria from the IPDAS second round voting document as reported in:
Elwyn G, O'Connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, Feldman-Stewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T, on behalf of the International Patient Decision Aids Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. British Medical Journal. 2006 Aug 26;333(7565):417.


Publications

  1. Sawka C, O'Connor AM, Llewellyn-Thomas H, To T, Pinfold SP, Harrison-Woermke D. The appropriateness of adjuvant systemic therapy for axillary node-negative breast cancer: A physician opinion survey. Journal of Clinical Oncology. 13(6): 1459-1469, 1995.
  2. Man-Son-Hing M, Laupacis A, O'Connor AM, Wells G, Lemelin J, Wood W, Dermer M. Warfarin for atrial fibrillation: the patients' perspective. Archives of Internal Medicine. 156:1841-1848, 1996.
  3. Sullivan K, Hebert P, Logan J, Dales R, O'Connor AM, McKim D, McNeely PD. What do physicians tell patients with end-stage COPD about intubation and mechanical ventilation? Chest. 109:258-264, 1996.
  4. McNeely PD, Hebert PC, Dales RE, O'Connor AM, Wells G, McKim D, Sullivan K. Deciding about mechanical ventilation in end-stage chronic obstructive pulmonary disease: how respirologists perceive their role. Canadian Medical Association Journal. 156(2):177-183, 1997.
  5. O'Connor AM, Tugwell P, Wells G, Elmslie T, Jolly E, Hollingworth G, et al. A decision aid for women considering hormone therapy after menopause: Decision support framework and evaluation. Patient Education and Counselling. 33(3):267-79, 1998.
  6. O'Connor AM, Tugwell P, Wells G, Elmslie T, Jolly E, Hollingworth G, et al. Randomized trial of a portable, self-administered decision aid for post-menopausal women considering long-term preventive hormone therapy. Medical Decision Making. 18(3):295-303, 1998.
  7. Papaioannou A, Parkinson W, Adachi J, O'Connor AM, Jolly E, Tugwell P, Bedard M. Efficacy of comprehensive counselling for assisting women to make decisions about hormone therapy. Canadian Medical Association Journal. 159(10):1253-7, 1998.
  8. Sawka C, Goel V, Mahut C, Taylor G, O'Connor AM, Ackerman I, et al. Development of a patient decision aid for choice of surgical treatment for breast cancer. Health Expectations. 1(1):23-36, 1998.
  9. Dales R, O'Connor AM, Hebert P, Sullivan K, McKim D, Llewellyn-Thomas H. Intubation and mechanical ventilation for COPD: Development of an instrument to elicit patient preferences. Chest. 116:792-800, 1999.
  10. Drake ER, Engler-Todd L, O'Connor AM, Surh L, Hunter A. Development and evaluation of a decision aid about prenatal testing for women of advanced maternal age. Journal of Genetic Counseling. 8(4):217-233, 1999.
  11. Man-Son-Hing M, Laupacis A, O'Connor AM, Biggs J, Drake E, Yetisir E, Hart RG. A patient decision aid regarding antithrombotic therapy for stroke prevention in atrial fibrillation: a randomized controlled trial. Journal of the American Medical Association. 282(8):737-743, 1999.
  12. O'Connor AM, Drake ER, Fiset V, Graham I, Laupacis A, Tugwell P. The Ottawa Patient Decision Aids. Effective Clinical Practice. 2(4):163-170, 1999.
  13. Fiset V, O'Connor AM, Evans W, Graham I, DeGrasse C, Logan J. Development and evaluation of a decision aid for patients with stage IV non-small cell lung cancer. Health Expectations.3:125-136, 2000.
  14. O'Connor AM, Jacobsen MJ, Elmslie T, Jolly E, Wells G, Bunn H, et al. Simple vs Complex Patient Decision Aids: Is More Necessarily Better? (abstract) Medical Decision Making. 20(4):496, 2000.
  15. Stacey D. Development and evaluation of a breast cancer prevention decision aid to address the needs of women aged 50 and older at high risk for breast cancer [MScN Thesis]. Ottawa (ON): University of Ottawa; 2000.
  16. Comeau C. Development and Evaluation of a Home vs. Institutional Care Decision Aid for Family Members of Cognitively Impaired Seniors. Unpublished MScN Thesis. University of Ottawa, 2001.
  17. Dodin S, Légaré F, Daudelin G, Tetroe J, O'Connor AM. Prise de décision en matière d'hormonothérapie de remplacement: Essai clinique randomisé. Canadian Family Physician/Le Médecin de famille canadien. 47:1586-1593, 2001.
  18. Goel V, Sawka CA, Thiel EC, Hort EH, O'Connor AM. Randomized trial of a patient decision aid for choice of surgical treatment for breast cancer. Medical Decision Making. 21:1-6, 2001.
  19. Grant FC, Laupacis A, O'Connor AM, Rubens F, Robblee J. Evaluation of a decision aid for patients considering autologous donation of blood before open-heart surgery. Canadian Medical Association Journal. 164(8):1139-44, 2001.
  20. Laupacis A, Grant C, Laupacis A, O'Connor AM, Rubens F, Robblee J. Evaluation of a decision aid for patients considering autologous donation of blood before open-heart surgery. Canadian Medical Association Journal. 164(8):1139-1144, 2001.
  21. Man-Son-Hing M, Laupacis A, O'Connor AM, Hart RG, Feldman G, Blackshear JL, Anderson DC. Development of a decision aid for patients with atrial fibrillation who are considering antithrombotic therapy. Journal of General Internal Medicine. 15:723-730, 2001.
  22. Mitchell SL, Tetroe J, O'Connor, AM. A decision aid for long-term tube feeding in cognitively impaired older persons. Journal of the American Geriatrics Society. 49:1-4, 2001.
  23. O'Connor AM, Edwards A. The Role of Decision Aids in Promoting Evidence-Based Patients Choice. In Edwards A, Elwyn G, editors. Evidence-Based Patient Choice. Oxford: Oxford University Press; p. 220-42, 2001.
  24. Cranney A, O'Connor AM, Jacobsen MJ, Tugwell P, Adachi JD, Ooi DS, Waldegger L, Goldstein R, Wells G. Development and pilot testing of a decision aid for postmenopausal women with osteoporosis. Patient Education and Counseling. 47(3):237-247, 2002.
  25. Man-Son-Hing M, O'Connor AM, Laupacis A, Drake E, Biggs J, Hum V. The effect of qualitative versus quantitative presentation of probability estimates on patient decision making. A randomized trial. Health Expectations. 5:246-255, 2002.
  26. O'Connor AM, Jacobsen MJ, Stacey D. An evidence-based approach to managing women's decisional conflict. Journal of Obstetric, Gynecologic, and Neonatal Nursing. 31(5):570-581, 2002.
  27. Rostom A, O'Connor AM, Tugwell P. A Randomized Trial of a Computerized versus an Audio-booklet Decision Aid for Women Considering Post-menopausal Hormone Replacement Therapy. Patient Education and Counselling. 46:67-74, 2002.
  28. Stacey D, DeGrasse C, Johnston L. Addressing the Support Needs of Women at High-risk of Breast Cancer: Evidence-based Care by Advanced Practice Nurses. Oncology Nursing Forum. 29 (6), E77-E84, 2002.
  29. Clark HD, O'Connor AM, Graham ID, Wells GA. What factors are associated with a woman's decision to take hormone replacement therapy? Evaluated in the context of a decision aid. Health Expectations. 6(2):110-117, 2003.
  30. Guimond P, Bunn H, O'Connor AM, Jacobsen MJ, Tait V, Drake E, Graham I, Stacey D, Elmslie T. Validation of a tool to assess health practitioners' decision support and communication skills. Patient Education and Counseling. 50(3):235-245, 2003.
  31. Légaré F, O'Connor AM, Graham ID, Wells GA, Jacobsen MJ, Elmslie T, Drake ER. The effect of decision aids on the agreement between women's and physicians' decisional conflict about hormone replacement therapy. Patient Education and Counseling. 50(2):211-221, 2003.
  32. O'Connor AM, Drake ER, Wells GA, Tugwell P, Laupacis A, Elmslie T. A survey of the decision-making needs of Canadians faced with complex health decisions. Health Expectations. 6(2):97-109, 2003.
  33. O'Connor AM, Stacey D. Knowledge transfer to patients: Methods to support patients' decisions. In: P Tugwell, B Shea, G Wells, V Ibeke, M Boers, L Simon, P Brooks (Eds.), Evidence-Based Rheumatology. Oxford: British Medical Journal. 2003.
  34. O'Connor AM, Tait V, Stacey D, Légaré F. Communicating the benefits/harms of estrogen-progestin hormone therapy with decision aids. Medscape Women's Health eJournal. 8(2), 2003.
  35. Stacey D, O'Connor AM, DeGrasse C, Verma S. Development and evaluation of a breast cancer prevention decision aid for higher risk women. Health Expectations. 6:3-18, 2003.
  36. Lalonde L, O'Connor AM, Drake E, Duguay P, Lowensteyn I, Grover SA. Development and preliminary testing of a patient decision aid to assist pharmaceutical care in the prevention of cardiovascular disease. Pharmacotherapy. 24(7):909-922, 2004.
  37. Murray MA, Miller T, Fiset V, O'Connor AM, Jacobsen MJ. Decision support: helping patients and families to find a balance at the end of life. International Journal of Palliative Nursing. 13(6):270-277, 2004.
  38. O'Connor AM, Stacey D, Légaré F, Santesso N. Knowledge Translation for Patients: Methods to Support Patients' Participation in Decision Making About Preference-Sensitive Treatment Options in Rheumatology in P Tugwell, B Shea, M Boers, P Brooks, LS Simon, V Strand, G Wells (eds), Evidence-Based Rheumatology. BMJ Books. Pp. 41-62. 2004.
  39. Tugwell P, Shea B, Boers M, Brooks P, Simon LS, Strand V, Wells G, editors. Evidence-Based Rheumatology. London: BMJ Books; 2004.
  40. Laupacis A, O'Connor AM, Drake ER, Rubens FD, Robblee JA, Grant FC, Wells PS. A decision aid for autologous pre-donation in cardiac surgery: A randomized trial. Patient Education and Counseling. Epub, 2005.
  41. Wilson KG, Arron SD, Vandenheen KL, Hebert PC, McKim DA, Fiset V, Graham ID, Sevigny E, O'Connor AM. Evaluation of a decision aid for making choices about intubation and mechanical ventilation in Chronic Obstructive Pulmonary Disease. Patient Education and Counseling. 57:88-95, 2005.
  42. Elwyn G, O'Connor AM, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, Feldman-Stewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T, on behalf of the International Patient Decision Aids Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. British Medical Journal. 333(7565):417, 2006.



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