Development & Validation of a Web-based Decision Aid to Facilitate Shared Decision Making in Sickle Cell Disease by Patients & Families

Transcription

1 Development & Validation of a Web-based Decision Aid to Facilitate Shared Decision Making in Sickle Cell Disease by Patients & Families L. Krishnamurti, D. Ross, N. Bakshi,A. Williams*, P. Lane, G. Loewenstein** * Children s Sickle Cell Foundation, Pittsburgh **Carnegie Mellon University, Pittsburgh, PA Patient Centered Outcomes Research Institute (PCORI): CER EM

2 Shared decision making is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values and preferences. -The Salzburg Statement on Shared Decision Making,

3 Patients Often Excluded From Decision Making Paternalistic Opinion Doctor Informative Information Patient Doctor Patient 3

4 Shared Decision Making is an Ethical Imperative Accurate evidence based information Options, their Risks and Benefits Tailored to patient needs Time to make Decisions Peruse information Doctor Ask Questions Share concerns& what is important for them State their preferences Patient 4

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6 Steps in Developing and Evaluating a Decision Aid Assess need. Assess feasibility. Define the objectives of the aid. Identify the framework of decision support. Select the methods of decision support to be used in the aid. Select the designs and measures to evaluate the aid. Plan dissemination. 6

7 Ottawa Decision Support Framework Decisional Needs Decisional conflict (uncertainty) Knowledge & expectations Values Support & resources Decision: type, timing, stage, leaning Personal / clinical characteristics Decision Quality Informed Values-based Actions Delay, continuance Impact Values-based health outcomes Regret & blame Appropriate use & costs of services Decision Support Clarify decision & needs Provide facts, probabilities Clarify values Guide in deliberation & communication Monitor / facilitate progress Counseling. Decision Tools. Coaching 7

8 Needs Assessment Nationwide Geographically dispersed sample (n=205) Patients Caregivers Stakeholders Physicians and other health care providers Recruited: national conferences and seminars Qualitative interviews minutes Recorded, transcribed, coded analyzed using descriptive analyses 8

9 Needs assessment: Is there a need for a decision aid for SCD? Are sufficient numbers affected and how are they affected Is there sufficient variation in utilization? Are there decision aids available to meet these needs Is there a demand for decision aids and what methods are preferred What are the decision needs of patients and practitioners? What makes the decision difficult? 9

10 Decisional Needs of Patients and Stakeholders Lack of knowledge and unbiased sources to inform decision making Influence of personal values e.g. fertility, finances, trust of healthcare system Ability to participate in decision despite pressures from family to defer and providers to make, decision Preference for format of presentation: electronic, visual, concise, accurate and from user perspective 10

11 Objectives of Decision Aid Improve knowledge of patients and stakeholders regarding sickle cell Improve knowledge of patients and stakeholders regarding treatment decisions : Hydroxyurea, Chronic Blood Transfusion and Bone marrow transplantation 11

12 Methods of Decision Support Used in Decision Aid Information about clinical condition, options and outcomes Presenting probabilities of outcomes Values clarification exercises Information about others opinions Guidance and coaching in decision making Platform agnostic web based presentation 12

13 Designs and Measures to Evaluate Decision Aid Randomized clinical trial with cross over using mixed methods Validated surveys administered before, after visit with physician and 3 months later. Surveys choice predisposition, self-efficacy, decisional conflict, stages of change, decisional regret. Assess knowledge and understanding Values clarification Qualitative interviews 13

14 Alpha and Beta Testing Completed Version 2.0 of site is on the web. ( Enrolling patients considering a decision ( Hu/Chr. Transfusion/BMT) in randomized clinical trial Contact Diana Ross for enrolling patients. or stop by at table. Presentation Sat 215 PM on Patient Values in Decision Making. We will come out to your patient event 14

15 Enhance Your Decision Aid Living document Inviting more testimonials regarding SCD, HU, Transfusion, BMT or any aspect of SCD Inviting patients, stakeholders, providers for beta testing We can record video remotely Plan translation to Spanish, French, other language? Contact 15