Practice Guidelines Implementation Network (PGIN) Evidence-Based Communication Using Decision Aids
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1 Practice Guidelines Implementation Network (PGIN) Evidence-Based Communication Using Decision Aids American Society of Clinical Oncology All rights reserved.
2 Objectives Increase knowledge and awareness of ASCO shared decision-making tools Help practices consider how to incorporate use of tools in work flow Introduce State Affiliates to science of patient communication, create a feedback loop to ASCO
3 Preference-Based Medicine Step Evidence-Based Medicine Preference-Based Medicine 1 Asking focused questions Proper setup and introduction 2 Finding the evidence Eliciting values and preferences and learning about goals 3 Performing critical appraisal De-biasing strategies and responding to emotions 4 Making a decision Making a recommendation and seeking consensus 5 Evaluating performance Assuring nonabandonment and follow-up Quill and Holloway. Evidence, Preferences, Recommendations Finding the Right Balance in Patient Care. NEJM. May 3, 2012.
4 What is a Decision Aid? A Decision Aid helps: Assess needs Provide decision-making support Evaluate how effective clinicians interventions were Enables clinician to present evidence/data to patients/caregivers Verbal Text Graphical *Source: O Connor et al. An Evidence-Based Approach to Managing Women s Decisional Conflict, J Ob, Gyn, and Neonatal Nursing, 2002
5 Core concepts Shared decision-making Patient-centered care Adult learning styles visual communication Visual communication helpful for those with low medical literacy Personalizing patient-clinician communication
6 Why use a Decision Aid? Health care decisions all carry: potential positive outcomes potential negative outcomes Two or more options may be equivalent e.g. overall survival similar between two agents Guidelines may be difficult for patients to interpret Can help clinicians interpret ASCO Guidelines
7 Why use a Decision Aid? Patients faced with decision: Feelings of uncertainty Not everyone agrees that the benefits outweigh the harms *Stacey D et al. Development and evaluation of a breast cancer prevention decision aid for higher-risk women, Health Expect Mar;6(1):3-18.
8 Why use a Decision Aid? Decisional conflict Uncertainty or difficulty in identifying the best alternative due to risk or uncertainty of outcomes Need o make value judgements about potential gains vs losses Anticipated regret over positive aspects of rejected outcomes (e.g. 63% of women considering tamoxifen for breast cancer risk reduction experienced this feeling)* *Stacey D et al. Development and evaluation of a breast cancer prevention decision aid for higher-risk women, Health Expect Mar;6(1):3-18.
9 Why use a Decision Aid? May increase patient satisfaction Can increase patient knowledge compared with usual practice without increasing anxiety (in cancer screening)** ASCO s Decision Aids are patient-friendly **Source: O Brien et al, Are Cancer-Related Decision Aids Effective?, JCO 2009
10 Weighing Your Options
11 Shared Decision Making Decision aids, which can be delivered: Online on paper, or on video, help patients absorb relevant clinical evidence and aid them in developing and communicating informed preferences, particularly for possible outcomes that they have not yet experienced. Barry and Edman-Levitan. Shared Decision Making The Pinnacle of Patient-Centered Care.
12 Shared Decision Making Use of patient decision aids for a range of preferencesensitive decisions led to increased knowledge more accurate risk perceptions a greater number of decisions consistent with patients values a reduced level of internal decisional conflict for patients, and fewer patients remaining passive or undecided tool to help address the problems of overdiagnosis and overtreatment.. Barry and Edman-Levitan. Shared Decision Making The Pinnacle of Patient-Centered Care.
13 Improving Risk Communication Use plain language to make written and verbal materials more understandable. Present data using absolute risks. Present information in pictographs if you are going to include graphs. Present data using frequencies. Use incremental risk format to highlight how treatment changes risks from preexisting baseline levels. the order in which risks and benefits are presented can affect risk perceptions May use summary tables that include all of the risks Recognize that comparative risk information (eg, what the average person s risk is) is persuasive and not just informative. May present only the information that is most critical to the patients decision making, even at the expense of completeness. Repeatedly draw patients attention to the time interval over which a risk occurs. Fagerlin, Zikmund-Fisher, Ubel. Helping Patients Decide: Ten Steps to Better Risk Communication. JNCI 2011;103:
14 ASCO Decision Aids Breast Cancer Adjuvant Endocrine Therapy for Women with Hormone Receptor- Positive Breast Cancer Lung Cancer Stage IV Non-Small Cell Lung Cancer - chemotherapy and erlotinib Chemoprevention or Screening Breast Cancer Risk Reduction PSA Test for Prostate Cancer Screening
15 Plain language ASCO Decision Aid Tool: Prostate Cancer Screening with PSA Testing The PSA test itself is simple. It is a blood sample that can be collected as part of a routine check-up at the doctor s office. The PSA test checks for raised PSA levels in the blood. ASCO Decision Aid Tool: Adjuvant Endocrine Therapy for Hormone Receptor-Positive Breast Cancer After you have surgery, radiation, and/or chemotherapy, you should think about whether or not to take adjuvant endocrine therapy. Adjuvant endocrine therapy is medicine only for women with ER+ and/or PR+ breast cancer. There are two basic types of adjuvant endocrine therapy: tamoxifen and aromatase inhibitors.
16 Pictographs # out of 100 Tamoxifen alone Disease-Free Survival Aromatase Inhibitor alone Disease-Free Survival ASCO Decision Aid Tool: Adjuvant Endocrine Therapy for Hormone Receptor-Positive Breast Cancer Pictographs illustrate the frequency of participants experiencing an event out of 100 participants receiving the same intervention. Pictograph created courtesy of cbssm.org
17 Frequencies ASCO Decision Aid Tool: Prostate Cancer Screening with PSA Testing Out of 1000 men who had screening, about 4 died of prostate cancer. Out of 1000 men who did not have screening, about 5 died of prostate cancer. ASCO Decision Aid Tool: Adjuvant Endocrine Therapy for Hormone Receptor-Positive Breast Cancer Out of 100 women taking an aromatase inhibitor for 5 years, 16 had breast cancer return.
18 Comparative Risk ASCO Decision Aid Tool: Adjuvant Endocrine Therapy for Hormone Receptor- Positive Breast Cancer 1. Out of 100 women taking tamoxifen for 5 years, about 5 women (4.9) got blood clots. 2. Out of 100 women taking an aromatase inhibitor for 5 years, about women (2.4) got blood clots. Chance of getting a blood clot in 5 years 3. Out of 100 women who took tamoxifen and switched to an aromatase inhibitor, about 5 women (4.8) got blood clots. Tamoxifen Aromatase Inhibitor Tamoxifen then Aromatase Inhibitor
19 Summary Tables of Risks and Side Effects What are possible rare side effects that women may experience? What are more common side effects that women may experience? ASCO Decision Aid Tool: Medications to Reduce the Risk of Developing Breast Cancer (excerpt) Tamoxifen Raloxifene Exemestane thromboembolic events cardiovascular events endometrial cancer. hot flashes, sweats, vaginal discharge, dryness, and menstrual irregularities. bone loss for premenopausal women thromboembolic events cardiovascular events hot flashes, leg cramps, peripheral edema, flu syndrome, arthralgia, and sweating. a decrease in bone mineral density hot flashes, sweats, arthralgia, headache, and insomnia. Who should not take this medication? Women with a prior history of blood clots in the veins or in the lung, or with stroke or stroke-like events women who are, or may become, pregnant, or nursing mothers. Women with a prior history of blood clots in the veins or in the lung, or with stroke or stroke-like events nursing mothers. How could it affect my quality of life? You may experience some of the side effects listed above, although these tend to go away after treatment is complete. Women report fewer breast complaints and headaches, especially during treatment. There are some reports of a slight increase in problems related to sexual functioning.
20 Most Critical Information ASCO Decision Aid Tool: STAGE IV Non-Small Cell Lung Cancer (NSCLC)First-Line Chemotherapy What are my chances of being alive at one year if I take chemotherapy or do best supportive care? Chemotherapy Best Supportive Care (Hospice) Alive at 1 year Dead at 1 year 0% 20% 40% 60% 80% 100% Chance of being alive at one year
21 Most critical information ASCO Decision Aid Tool: Adjuvant Endocrine Therapy for Hormone Receptor-Positive Breast Cancer Binary choices (Ipsilateral disease-free survival)
22 Time interval ASCO Decision Aid Tool: Adjuvant Endocrine Therapy for Hormone Receptor-Positive Breast Cancer Out of 100 women taking tamoxifen for 5 years, 17.4 had breast cancer return. ASCO Decision Aid Tool: STAGE IV Non-Small Cell Lung Cancer (NSCLC) First-Line Chemotherapy What are my chances of being alive at one year if I take chemotherapy or do best supportive care? In more recent trials using newer chemotherapy with cisplatin (Platinol ) and pemetrexed (Alimta ) or cisplatin and gemcitabine (Gemzar ) for people with advanced lung cancer, 44 out of 100 people were alive after one year. At two years, 19 out of 100 people were alive. (ibid.)
23 Summary Decision Aids and Discussion Guides display patient-friendly data at your fingertips (in various forms [oral, visual]) Allow provider to present risks and benefits of intervention Facilitate shared decision-making Can help practice communicate a consistent message May answer common questions and therefore, save time Shared decision-making may result in improved patient compliance with treatment plan Based on research on risk communication and science of patient communications
24 Breast cancer Available Decision Aids Risk reduction Adjuvant hormonal therapy Prostate cancer PSA Testing Lung Ccancer Unresectable NSCLC Adjuant NSCLC
25 ASCO Practice Guidelines Implementation Network (PGIN) A network of ASCO volunteers who aid in the dissemination and promote implementation of ASCO clinical practice guidelines in the oncology practice community. Membership includes: ASCO Clinical Practice Guidelines Committee (CPGC) members, State Society members, Oncologists (community and academic) other disease site content experts with an interdisciplinary focus (medical oncology, pediatric oncology, surgical oncology and radiation oncology), oncology nurses hematology/oncology pharmacists oncology practice managers.
26 ASCO Practice Guidelines Implementation Network (PGIN) PGIN members: Add community-based provider perspective Represent PGIN on Clinical Practice Guidelines Committee (CPGC), Guideline Advisory Groups (GAGs), and Guideline Expert Panels Provide input on the implementability of guideline recommendations Encourage the Guideline Panels to discuss practice issues that could impact the application of recommendations Upon request from the CPGC or staff, review and comment on ASCO guideline implementation tools or suggest new tools Communicate about ASCO clinical practice guidelines and clinical tools and resources to peers (State Society members, specialty society members, colleagues). Pilot Clinical Tools and Resources (including Decision Aids) in practice
27 Resources ASCO Guidelines and Clinical Tools and Resources ( or Practice Guidelines Implementation Network (PGIN) ( ASCO Guidelines Wiki (
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