Finding the gaps between national guidelines and patient decisions in the hereditary cancer community

Transcription

1 Finding the gaps between national guidelines and patient decisions in the hereditary cancer community Lisa Rezende, PhD Vice President/Education FORCE: Facing Our Risk of Cancer Empowered

2 The ABOUT Network

3 ABOUT Patient-Powered Research Network ABOUT is a research network and registry developed and governed by and for the HBOC community and organized by FORCE ABOUT research is designed and conducted by people from within the HBOC community Research team belongs to the community we are studying We meet people out in the community to turn their real-world experiences and questions into relevant and scientifically rigorous research

4 Who Qualifies for ABOUT? Anyone who has a personal or family history consistent with hereditary breast and ovarian cancer (HBOC) can join: BRCA1 or BRCA2 mutation carriers and their adult family members (female or male, whether or not they have had cancer) Anyone whose family has a mutation in genes that increases risk for breast, ovarian, prostate, melanoma or pancreatic cancers Personal or family history of breast, ovarian, prostate, melanoma or pancreatic cancers?? BRCA1, BRCA2 PALB2, Other genes PTEN/ Cowden P53/ Li-Fraumeni VUS, Negative, or not tested Family history

5 ABOUT Patient-Powered Research Network Research Team: FORCE HBOC researchers at the University of South Florida The Michigan Department of Community Health Governance (Steering Committee) Research Team Trained FORCE advocates (FRAT graduates) Representation from partnering advocacy groups Work Groups Research Generation and Prioritization Promotion and Recruitment Engagement and Retention

6 FORCE Research Advocate Training (FRAT) Prepares Consumers to Participate in Network Leadership Training course for consumers, patients & other HBOC stakeholders without advanced medical or research training Helps consumers understand the research process so they can represent the HBOC community research interests and goals FRAT graduates can apply to participate on ABOUT Steering Committee and Work Groups

7 How Does ABOUT Involve Consumers? Opportunities for engagement within and outside of traditional research roles RESEARCH PARTICIPANT CLINVAR DATABASE GENERATOR & PERCOLATOR NETWORK GOVERNANCE Patients in Research Registry Participants sign consent to enroll and complete baseline survey, will be recontacted Anyone with BRCA Test Result Patients contribute test results for uploading into ClinVar public database All Stakeholders FORCE members, program users, social media followers, and constituents of partner groups submit questions, answer polls, respond to surveys, etc. Research Advocates FRAT Program graduates are nominated for steering committee and work groups

8 Turning Community Medical Questions into Research: Generator And Percolator (GAP) Tools

9 ABOUT Network GAP Tools Help Us Prioritize Research Questions Solicit community s input, guidance, and engagement at every step Generate and refine the important patient questions that are highest priority into answerable research questions Inquiries to helpline, message boards, outreach groups Engagement surveys Facebook page and polls Needs assessments from partner members

10 ABOUT Network GAP Tools New and emerging research Needs assessment community Questions stakeholders from Step 4 Step 4 Step

11 ABOUT Network GAP Tools New and emerging research Needs assessment Questions/comments submitted by stakeholders Engagement polls New research or media articles Needs assessment results from advocacy partners

12 ABOUT Network GAP Tools 2 1 Literature and guideline review AND Advisory Board consulted

13 ABOUT Network GAP Tools Article written to clarify information and guidelines, and share limits Step of 1 knowledge Step

14 ABOUT Network GAP Tools Engagement surveys to Step assess opinions, preferences and understanding Step of evidence and impact on Step decision-making Step 4 Step 4

15 ABOUT Network GAP Tools Step 4 End result is well-defined research questions for Patient Centered Outcomes Step 4 Research Step 4 Product

16 Example: Decision-Making Around Surgeries to Reduce Risk of Ovarian Cancer BRCA1 and BRCA2 mutation carriers are at greatly increased risk of ovarian cancer (20-45% lifetime risk). National guidelines recommend women with BRCA1 or BRCA2 mutations have surgery to remove their ovaries and fallopian tubes. Step Step Step management of surgical menopause for BRCA1Step and 3BRCA2 There are no national guidelines around hysterectomy or mutation carriers who have never had cancer. Step 4 Step 4

17 GAP Tools Example: Decision-Making About Hysterectomy with BSO Step Step Step 4 Step Step 4

18 GAP Tools Example: Decision-Making About Hysterectomy with BSO Step Step Step Step 4 Step 4

19 GAP Tools Example: Decision-Making About Hysterectomy with BSO 50% of women who had BSO had hysterectomy True for BRCA1 and BRCA2 mutation carriers Step Step Factor that most influenced decision on hysterectomy both for, and against was physician recommendation Step Step 4 Step 4

20 GAP Tools Example: Decision-Making About Hysterectomy with BSO About half of women chose hysterectomy at the community time stakeholders BSO and half do not Doctor s recommendation is one of the leading factors influencing the decision to have or not have hysterectomy at the time of BSO Other factors cited for hysterectomy include uterine cancer risk, family history of cancer Other factors cited for Step keeping 1 uterus include worry about potential side effects and potential for surgical Step complications Step Most women are not taking Step HRT/ERT, 2 although close to 50% of those under 50 who have never had cancer Step are Follow-up care differs across the board with most women getting annual pelvic exams Step 4 Step 4

21 GAP Tools Example: Decision-Making About Hysterectomy with BSO Step Step Step Step 4 Step 4

22 GAP Tools: Identifying Topics for Further Surveys 50% of respondents who never had cancer and younger than 50 were not on any hormone replacement (HRT or ERT) after BSO Step Step Step Step 4 Step 4

23 GAP Tools: Decision-making Around Management of Surgical Menopause Survey 52% of respondents under 50 who had never had cancer were currently taking HRT/ERT, 8% taken in the past but no longer, and 40% never taken hormones Step Step Step Step 4 Step 4

24 GAP Tools: Decision-making Around Management of Surgical Menopause Survey For women under 50 who have never had cancer Questions and from have undergone riskreducing removal of ovaries and fallopian tubes Top factors influencing decision to take HRT/ERT: treating hot flashes (85%) age at time of ovary removal (81%) doctor s recommendation (81%) Step Step Top factors influencing Step decision 2 against taking HRT/ERT: Step risk of breast cancer (77%), doctor s recommendation Step 4 (64%), Step 4 concern about side effects of hormones (other than cancer risk) (54%)

25 GAP Tools: Decision-making Around Management of Surgical Menopause Survey Why women stop taking HRT or ERT 51% concerned about cancer risk 30% only planned a specific time 25% doctor recommendation Step Step 20% medical concern or side effect 12% cost 10% felt they did not help Step Step 4 Step 4

26 GAP Tools: Decision-making Around Management of Surgical Menopause Survey Step Step About half of women are on or have taken hormones after BSO. Doctor s recommendation is one of the leading factors influencing the decision to take hormones Most women do not question their decisions around hormone replacement Most women are not more concerned about cancer risk based on their decisions around hormone replacement Step Most women who stopped hormones did so out of concern for cancer risk Step 4 Step 4

27 GAP Tools: Engagement surveys Patients need balanced information and clear explanations on emerging research and the comparative benefits and risks for medical decision associated with HBOC More information is needed about how doctors make recommendations to patients in the absence of guidelines on a particular topic More resources are needed to educate health care providers Step and 1 insurance companies to assure that Step people 1 have access to evidence-based options Step Step More research is needed Step on long-term 2 health and quality of life outcomes surrounding ovarian cancer Step risk and prevention in high-risk women These results will guide our research moving forward Step 4 Step 4

28 ABOUT Network GAP Tools Engagement survey results taken to our Research Generation and Step 4 Prioritization Work Group Step 4 Step 4 Product

29 ABOUT Network GAP Tools Survey results reported back to Step 4 the patient community Step 4 Step 4 Product

30 Acknowledgments ABOUT Network o Dr. Rebecca Sutphen, University of South Florida o Dr. Sue Friedman, FORCE o Debra Duquette, CGC,Michigan Department of Community Health o Lisa Schlager, FORCE o Beth Ann Clark, University of South Florida o Colleen Maguire, University of South Florida o Steering Committee Members: Dr. Laura Koontz (Ovarian Cancer National Alliance), Leslie Hammersmith (Young Survival Coalition), Kelly Hodges (Sisters Network), Courtney Christian (Black Women s Health Imperative), Marisol Rosas, Joi Morris, Carmen Pace, Lori Riddle Walker, Brian Honick, Emily Jones, Marleah Kruzel, Melanie Nix, Robin Karlin Funded by a grant from the Patient-centered Outcome Research Institute