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What are the Essential Elements to Enable Patient Participation in Medical Decision Making?

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Abstract

BACKGROUND

Patient participation in shared decision making (SDM) results in increased patient knowledge, adherence, and improved outcomes. Despite the benefits of the SDM model, many patients do not attain the level of participation they desire.

OBJECTIVE

To gain a more complete understanding of the essential elements, or the prerequisites, critical to active patient participation in medical decision making from the patient’s perspective.

DESIGN

Qualitative study.

SETTING

Individual, in-depth patient interviews were conducted until thematic saturation was reached. Two analysts independently read the transcripts and jointly developed a list of codes.

PATIENTS

Twenty-six consecutive subjects drawn from community dwelling subjects undergoing bone density measurements.

MEASUREMENTS

Respondents’ experiences and beliefs related to patient participation in SDM.

RESULTS

Five elements were repeatedly described by respondents as being essential to enable patient participation in medical decision making: (1) patient knowledge, (2) explicit encouragement of patient participation by physicians, (3) appreciation of the patient’s responsibility/rights to play an active role in decision making, (4) awareness of choice, and (5) time.

LIMITATIONS

The generalizability of the results is limited by the homogeneity of the study sample.

CONCLUSIONS

Our findings have important clinical implications and suggest that several needs must be met before patients can become active participants in decisions related to their health care. These needs include ensuring that patients (1) appreciate that there is uncertainty in medicine and “buy in” to the importance of active patient participation in decisions related to their health care, (2) understand the trade-offs related to available options, and (3) have the opportunity to discuss these options with their physician to arrive at a decision concordant with their values.

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Acknowledgements

Dr. Fraenkel had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. We would like to thank all the participants for their time and effort. The authors do not have any financial interests that would be considered a conflict of interest. This study was partially funded by the Arthritis Foundation Clinical Science Grant. Dr. Fraenkel is also supported by the K23 Award AR048826-01 A1.

Conflict of Interest

None disclosed.

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Authors and Affiliations

Authors

Corresponding author

Correspondence to Liana Fraenkel MD, MPH.

APPENDIX

APPENDIX

Discussion Guide

Attitudes Towards Shared Decision-making Study

The purpose of this study is to understand communication between patients and their doctors around treatment decisions. We are interested in understanding how patients and their doctors make decisions about treatment for an illness or a medical condition. The information gathered through this study will be used to develop strategies to help patient and doctors communicate more effectively.

I will be asking you 14 questions. They are all open-ended questions and there are no right or wrong answers. The first 6 questions are about your own experiences in making decisions about medical care. They are not necessarily specific to osteoporosis.

  1. 1.

    To begin, I am going to ask you to think back to a time when an important decision had to be made about your treatment for an illness or a medical condition. [NOTE: Do not include small decisions, such as having a blood test.]

    IF PARTICIPANT CANNOT THINK OF A DECISION FOR THEMSELVES, ASK ABOUT A PARENT, CHILD, OR SOME OTHER PERSON THEY CARE FOR.

    Please tell me about that situation.

    • Tell me very briefly about the illness or condition.

    • Also, just briefly, how did you find out about this illness or condition?

    • What was the decision that had to be made about treating this condition?

    • How was the decision made?

    • What was your role in the decision-making process?

    • What were you told to do?

    • What did do about it?

    • Who did you talk to about this decision?

    • Why did you choose to do this?

    • Who helped you to make this decision?

    • What information did you gather about making this decision?

    • How did you get this information?

    • Are there other things you have considered doing?

  2. 2.

    Thinking back about this decision and other decisions related to your health care, to what extent do you feel that you have shared in the decision making with your doctor(s)? Why? PROBE: To what extent do you feel you have had a role in, or participated in the decision making?

  3. 3.

    Thinking back over times when you faced a decision about medical care, was there ever a time when you wished you had a bigger role in the decision-making process? PROBE: Why did you wish you had a larger role?

  4. 4.

    Now, thinking back about times when you faced a decision about medical care, was there ever an instance when you wished you were asked to make fewer decisions or have less of a role in the decision-making process? PROBE: Why?

  5. 5.

    Have you ever disagreed with your doctor about a treatment plan that was suggested to you? PROBE: How did you handle this disagreement?

  6. 6.

    Have you ever been told by a doctor to try a treatment option that was impractical for you? How did you respond to this? PROBE: Has a doctor ever disagreed with you about something you wanted to try?

The next 4 questions are about the value or importance you place on elements of the decision-making process.

  1. 7.

    In a situation where there are choices about treatment, how important is the physician’s recommendation to you in making a decision?

  2. 8.

    How important is it for the patient and doctor to share a similar outlook, such as values about health or use of medicine? Why? PROBE: Think about a situation where there are 2 medicines approved for an illness, medicine A and medicine B. What would you do if you wanted to take medicine A but the doctor recommended medicine B?

  3. 9.

    How important do you think it is for your doctor to have a clear understanding of what issues are most important to you when deciding which treatment to take?

  4. 10.

    How important is it that a physician explains clearly the financial costs of a course of treatment? Why?

The next set of questions covers your beliefs and attitudes about patient involvement in treatment decisions.

  1. 11.

    I will begin this set by asking you to talk about the pros and cons of having a patient participate in the decision-making process. What are your thoughts about having a patient be part of the decision? Why? PROBE: What is the best way to make a decision about how to treat an illness or a medical condition? Why? PROBE: What are the pros and cons of each approach? Why?

  2. 12.

    Every treatment has a chance of helping, as well as a chance of causing side effects. Who should decide whether the treatment is worth the risk? PROBE: Who should decide what side effects the patient should put up with?

  3. 13.

    In general, do you think there any barriers in our health care system which make it difficult for patients to participate in their health care? Why?

  4. 14.

    What do you think could be done to improve the decision-making process for you?

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Fraenkel, L., McGraw, S. What are the Essential Elements to Enable Patient Participation in Medical Decision Making?. J GEN INTERN MED 22, 614–619 (2007). https://doi.org/10.1007/s11606-007-0149-9

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