Workgroup Report and Open Discussion

1. Workgroup Report and Open Discussion Provider Ad Hoc Workgroup, Advisory Committee on Breast Cancer in Young Women April 19, 2012

2. Members • GenerosaGrana* • Brandon Hayes-Lattin* • Renee Nicholas • Wendy Susswein* • Karen Kelly Thomas* • Laura Tillman • JoAnne Zujewski

3. Charge • To gather initial background information and to advise the Committee regarding behavior change of providers as relates to: • Enhancing provider knowledge regarding breast cancer in young women • Assessing gaps, guidelines, and issues messaging regarding breast cancer in young women • Improving skills of providers regarding delivery of care to young women at risk (average risk and high risk) of- and/or facing breast cancer (e.g. survivors) • “Providers” to be defined

4. Patient Populations • Women of Reproductive Age (up to 45 years) • Pre-Diagnosis • Average risk • High risk (including risk for relapse or second primary) • Post-Diagnosis

5. Providers • Pre-Diagnosis and Early Diagnosis (Primary Care) • Primary Care Physicians • General Practice • Family Practice • Internal Medicine • OB/Gyn • Primary Care Nurse Practitioners/Physician Assistants

6. Providers • Post-Diagnosis • Oncologists • Medical Oncology • Surgical Oncology • Radiation Oncology • Oncology Nursing • Primary Care Providers (including transitions)

7. Professional Societies and Networks • American College Health Association (ACHA) • American Academy of Family Practice (AAFP) • American College of Physicians (ACP) • American Congress of Obstetricians and Gynecologists (ACOG) • American Academy of Nurse Practitioners (AANP) • American Academy of Physician Assistants (AAPA)

8. Professional Societies and Networks • American Society of Clinical Oncology (ASCO) • American College of Surgeons (ACoS) • American Society for Radiation Oncology (ASTRO) • Oncology Nursing Society (ONS) • National Comprehensive Cancer Network (NCCN)

9. Assessment of Factors for Behavior Change • Knowledge • Training, Continuing Education • Resources • Guidelines, Materials • Skills • Communication • Access • Utilization/Opportunities for Engagement • Accountability • Quality Assurance

10. Knowledge/Guidelines Pre-Diagnosis and Post-Diagnosis

11. Available Guidelines • Screening • ACOG • ACP • AAFP • ASCO • ACoS • NCCN • Practice • ACHA • AAFP • ACOG • ACP • ASCO • ACoS • ASTRO • NCCN • ONS

12. Young Adult Preventative Health Guidelines “There But Can’t Be Found” • Identify adolescent and adult clinical preventive services guidelines relevant to the young adult age group; • Review, compare, and synthesize these guidelines, with emphasis on the extent to which professional guidelines are consistent with evidence-based guidelines developed by the US Preventive Services Task Force; • Recommend the next steps in the establishment and integration of preventive care guidelines for young adults. Ozer et al. Arch Pediatr Adolesc Med. 2012;166(3):240-247

13. Opportunities for Engagement • Sexually active women • Pregnant women • During Breastfeeding • Taking a Family history • Assessing chronic medical conditions (high blood pressure, diabetes, hyperlipidemia)

14. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF recommends screening and behavioral counseling interventions to reduce alcohol misuse by adults, including pregnant women, in primary care settings. • The USPSTF recommends routine screening for iron deficiency anemia in asymptomatic pregnant women. • The USPSTF recommends screening for asymptomatic bacteriuria with urine culture for pregnant women at 12 to 16 weeks' gestation or at the first prenatal visit, if later. • The USPSTF recommends screening for high blood pressure in adults aged 18 and older.

15. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF recommends that women whose family history is associated with an increased risk for deleterious mutations in BRCA1 or BRCA2 genes be referred for genetic counseling and evaluation for BRCA testing. • The USPSTF recommends that clinicians discuss chemoprevention with women at high risk for breast cancer and at low risk for adverse effects of chemoprevention. Clinicians should inform patients of the potential benefits and harms of chemoprevention. • The USPSTF recommends screening mammography for women, with or without clinical breast examination, every 1-2 years for women aged 40 and older.

16. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF recommends interventions during pregnancy and after birth to promote and support breastfeeding. • The USPSTF strongly recommends screening for cervical cancer in women who have been sexually active and have a cervix. • The USPSTF recommends screening for chlamydial infection for all sexually active non-pregnant young women aged 24 and younger and for older non-pregnant women who are at increased risk. • The USPSTF recommends screening for chlamydial infection for all pregnant women aged 24 and younger and for older pregnant women who are at increased risk.

17. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF recommends screening women aged 20 to 45 for lipid disorders if they are at increased risk for coronary heart disease. • The USPSTF recommends screening adults for depression when staff-assisted depression care supports are in place to assure accurate diagnosis, effective treatment, and follow-up. • The USPSTF recommends screening for type 2 diabetes in asymptomatic adults with sustained blood pressure (either treated or untreated) greater than 135/80 mm Hg. • The USPSTF recommends that all women planning or capable of pregnancy take a daily supplement containing 0.4 to 0.8 mg (400 to 800 μg) of folic acid.

18. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF recommends that clinicians screen all sexually active women, including those who are pregnant, for gonorrhea infection if they are at increased risk for infection (that is, if they are young or have other individual or population risk factors). • The USPSTF recommends intensive behavioral dietary counseling for adult patients with hyperlipidemia and other known risk factors for cardiovascular and diet-related chronic disease. Intensive counseling can be delivered by primary care clinicians or by referral to other specialists, such as nutritionists or dietitians. • The USPSTF strongly recommends screening for hepatitis B virus infection in pregnant women at their first prenatal visit.

19. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF strongly recommends that clinicians screen for human immunodeficiency virus (HIV) all adolescents and adults at increased risk for HIV infection. • The USPSTF recommends that clinicians screen all adult patients for obesity and offer intensive counseling and behavioral interventions to promote sustained weight loss for obese adults. • The USPSTF strongly recommends Rh (D) blood typing and antibody testing for all pregnant women during their first visit for pregnancy- 2004 related care.

20. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF recommends repeated Rh (D) antibody testing for all unsensitizedRh (D)-negative women at 24-28 weeks' gestation, unless the biological father is known to be Rh (D)-negative. • The USPSTF recommends high-intensity behavioral counseling to prevent sexually transmitted infections (STIs) for all sexually active adolescents and for adults at increased risk for STIs. • The USPSTF recommends that clinicians ask all adults about tobacco use and provide tobacco cessation interventions for those who use tobacco products.

21. Relevant US Preventive Services Task Force A/B Rated Recommendations • The USPSTF recommends that clinicians ask all pregnant women about tobacco use and provide augmented, pregnancy-tailored counseling to those who smoke. • The USPSTF strongly recommends that clinicians screen persons at increased risk for syphilis infection. • The USPSTF recommends that clinicians screen all pregnantwomen for syphilis infection.

22. NCCN Clinical Practice Guideline: Pre-Diagnosis • Breast Cancer Screening and Diagnosis • Normal Risk, Modified Gail Model • Increased Risk • Positive Physical Findings • Palpable Mass Age >29 • Palpable Mass Age <30 • Breast Cancer Risk Reduction • Familial Risk Assessment • Risk Reduction Therapy

23. ASCO University: Online CME • Focus Under Forty • Cancer Care • Clinical Trials • Diagnosis and Treatment • Survivorship • Fertility Preservation Issues (Female) • Primary Care Role • Supportive Care • Breast Cancer as a Second Malignancy

24. ASCO University Focus Under Forty: Primary Care Role • Discuss unique challenges facing AYA patients • List potential causes of delayed diagnosis and key presenting symptoms • Access, awareness of symptoms, family/social dynamics, psychosocial factors (fear, embarrassment, invincibility), lack of insurance, PCP awareness/experience/time • Importance of appropriate referrals • Value of shared care between PCP and oncologist

25. ASCO University Focus Under Forty: Primary Care Role

26. ASCO University Focus Under Forty: Breast Cancer as a 2nd Malignancy • Increase awareness of disease chronicit and recurrences • Identify breast cancer treatments that have a significant impact on QOL and assess potential of alternative options as appropriate for AYA • Discuss unique issues related to body image and sexuality

27. ASCO University Focus Under Forty: Breast Cancer as a 2nd Malignancy • Case after Hodgkin lymphoma: Risks • Mediastinal radiation • Prior breast biopsy with proliferative findings • 2nd hand smoke exposure • Mild alcohol use • Maternal aunt with breast cancer • Menarche age 12 • Breast fed children

28. ASCO: Guidelines • Breast Cancer Follow-Up and Management Guidelines in the Adjuvant Setting • Endorsement of the Cancer Care Ontario Practice Guideline on Adjuvant Ovarian Ablation in the Treatment of Premenopausal Women With Early-Stage Invasive Breast Cancer Khatcheressian et al. J Clin Oncol. 2006;24:5091-5097. Grigs et al. J Clin Oncol. 2011;29:1-5

29. ACoSCommision on Cancer • Cancer Program Standards 2012 • Accreditation, Quality Measurement, Performance Standards • Risk Assessment/Genetic Counseling • Patient Navigation • Psychosocial Distress Screening • Survivorship Care Plan • Prevention • Screening (Primary, Secondary, After Hodgkin lymphoma)

30. NCCN Clinical Practice Guideline: AYA • Age-Appropriate information • Fertility risks and fertility preservation • Psychosocial assessment • Genetic and familial risk assessment • BRCA1, BRCA2, TP53 (Li-Fraumeni syndrome) or PTEN (Cowdens syndrome) • Online resources for AYA patients • Screening • Breast cancer: chest radiation>20 Gy prior to age 30 with MRI and mammogram yearly starting age 25 or 8 years post

31. NCCN Clinical Practice Guideline: Breast Cancer • Workup, Treatment, Surveillance/Follow-up • Fertility and Birth Control After Adjuvant Breast Cancer Treatment • Breast Cancer During Pregnancy

32. Access/Utilization and Quality Improvement

33. Ambulatory Care Among Young Adults • National Ambulatory Medical Care Survey & National Hospital Ambulatory Medical Care Survey, 1996-2006 • Conclusion: Young adults use less ambulatory medical care relative to other groups and infrequently receive preventive care directed at the greatest threats to their health. Efforts to ensure appropriate preventive care are needed. Fortuna et al. Ann Intern Med. 2009;151:379-385

34. Ambulatory Care Among Young Adults Fortuna et al. Ann Intern Med. 2009;151:379-385

35. Utilization of Student Health Services ACHA Benchmarking Committee Report: 2010 Survey on the Utilization of Student Health Services

36. Utilization of Student Health Services ACHA Benchmarking Committee Report: 2010 Survey on the Utilization of Student Health Services

37. ASCO: Quality Oncology Practice Initiative (QOPI) • 89 Total Measures • 25 Core • Pain, Chemotherapy treatment summary, Tobacco, Emotional well-being • 9 Symptom • Infertility risks discussed prior to chemotherapy with patients of reproductive age • Fertility preservation options discussed or referral to specialist ASCO QOPI Summary of Measures, Spring 2012

38. ASCO: Quality Oncology Practice Initiative (QOPI) • 89 Total Measures • 14 Breast • Family history • Genetic testing/counseling • Therapy details ASCO QOPI Summary of Measures, Spring 2012

39. Quality Initiatives • Commission on Cancer: National Quality Forum • Quality of Cancer Care for Breast and Colorectal Cancer • ASTRO • Performance Assessment for the Advancement of Radiation Oncology Treatment (PAAROT)

41. Charge • To gather initial background information and to advise the Committee regarding behavior change of providers as relates to: • Enhancing provider knowledge regarding breast cancer in young women • Assessing gaps, guidelines, and issues messaging regarding breast cancer in young women • Improving skills of providers regarding delivery of care to young women at risk (average risk and high risk) of- and/or facing breast cancer (e.g. survivors) • “Providers” to be defined

42. Assessment of Factors for Behavior Change • Knowledge • Increasingly available, high quality • Resources • Increasingly available, high quality • Skills • More research required • Access • Observed challenge, Opportunity for improvement • Accountability • Increasingly available, Opportunity for integration

43. Discussion Questions • How can we better assess the knowledge base of providers? • How can we assure resources are used? How can we integrate with quality assessment/improvement efforts? • How can we better assess provider skills in resource utilization and communication? • How can we improve patient access and utilization?