AYA Best Practices Working Group

Transcription

1 AYA Best Practices Working Group Lor Randall, MD Huntsman Cancer Institute, Primary Children's Hospital, University of Utah Director, Sarcoma Services and Medical Director, HCI Surgical Services Chief, SARC Lab and Fellowships CO-Leader, Sarcoma Disease Oriented Research Team Professor of Orhtopaedics Carolyn Reynolds, APRN, MS Operations Director, Pediatrics Specialty Clinical Program; Intermountain Healthcare Objectives: Discuss some of the key issues that adolescents/young adults (AYA) with cancer face as they seek care in the healthcare system Discuss two ideas of how to assist AYA to overcome barriers is receiving desired care Discuss the challenges faced by adolesnents and young adults (AYA) faced with cancer Identify the deficiencies in current oncology delivery as it relates to AYA's Identify and appreciate survivorship issues for young adults who have been treated for cancer Discuss sarcoma treatment that will be used as an example paradigm

2 Huntsman-Intermountain Adolescent & Young Adult Cancer Care Program R. Lor Randall & Carolyn Reynolds On Behalf of the HI-AYA Working Group 9 th HICCP Annual Meeting August 25, 2016

3 HI-AYA Working Group Julie Asch Anna Beck Brad Bott Brynn Fowler Cheryl Gerdy Daanish Hoda Anne Kirchhoff Tibor Kovacsovics Richard Lemons Lauri Linder Craig Nichols Samantha Pannier Elizabeth Raetz R. Lor Randall Carolyn Reynolds Holly Spraker-Perlman John Sweetenham Jennifer Anne Wright Yelena Wu Jeff Yancey

4 Growing Public Awareness of Unique Issues Facing AYAs with Cancer NCCN, NCI, Institute of Medicine

5 The Facts >70,000 AYAs are diagnosed w/ cancer/year in US Age: years Leukemia, CNS, melanoma, sarcoma, others Cancer is leading cause of AYA disease related death #1 in females and #2 in males Only accidents, suicide, homicide claim more lives AYAs are 8X more likely to be diagnosed w/cancer than children < 15 yo. Most programs focus on younger or older

6 The Population: Utah Intermountain, HCI & the Community AYA ~10,000 cancer diagnoses AYA is 4% of cancer at most AYA in Utah: <400 cancer cases AYA Survivorship Cancer Survivors: 81,260 AYA survivors: 9% AYA survivors in Utah: ~7,300 people

7 The AYA Burning Platform: Medical no man s land Lack of survival progress in 30 years Biological differences Therapy tolerance, chemotherapy metabolism Treatment by physicians less familiar with the disease Delay in diagnosis Lack of new therapeutics Lack of availability and participation in clinical trials Lack of insurance/under-insured Poor adherence to therapy Lack of psychosocial and financial support

8 R. Lor Randall, MD, FACS, Anne Kirchhoff, PhD, MPH, Brynn Fowler, MPH, Samantha Pannier, Douglas Fair, MD, Echo Warner, MPH, Jeff Yancey, PhD, CHES, William Sausse, MD, Holly Spraker-Perlman, MD

9 HI-AYA Cancer Study Goal: To build a robust patient navigation program with a solid foundation in understanding what AYA patients, survivors, and providers in Utah need Clinical initiative informed by research Multilevel needs assessment to inform the development of the statewide AYA cancer navigation program. Statewide provider survey Multilevel Assessment AYA interviews HI-AYA Cancer Study Needs Assessment Key Informant interviews Supportive Care interviews

10 HI-AYA Cancer Study: Results Ovarian 5% AYA Diagnoses Distribution Breast 23% Other 15% Brain/ CNS 10% Sarcoma 23% Lymphoma 16% Thyroid 8% AYA Cancer Patient/Survivor Interviews (N=39) Patient navigators in Utah should provide targeted and accessible support for AYAs, with a focus on: o o o Social and emotional support Access to fertility services Connection to other AYA patients Most AYAs expressed a preference for phone or face to face communication AYAs expressed a desire to connect with the navigator at first diagnosis Key Informant Interviews (N=11) All key informants find the goals of the program important: AYA patients are needy of these services, and services are best disseminated through an informed centralized party. Statewide Oncology Provider Survey (N=106) 86.5% agreed that a navigator program would be very beneficial to their AYA cancer patients 85.7% cited that they would prefer to interact with the navigator via .

11 Next Steps: Evaluation Primary outcomes of interest will include patient utilization and reach of the navigator, and patient satisfaction with the program. Objective 1: Evaluate utilization and reach of navigation program. Develop database that includes: Date of initial navigator contact/time since diagnosis Frequency of interaction Average hours of interaction (total) and on specific topics (e.g., financial assistance) Types of services provided (financial, fertility, clinical trial, etc.) Patient demographics (age, sex, zip code, etc.) Method of interaction (in person, telephone, web) Objective 2: Assess AYA oncology patient experience with the navigation program. Survey the first 50 patients who enroll in the navigation program (if other funding is secured, we will continue to conduct the survey). Education on fertility concerns or other potential side effects Timely access to community resources Financial assessment and mobilization of financial assistance Overall satisfaction with the care received at their cancer center

12 HCI-Intermountain Collaboration! Co-developed Web-content [including draft logos] Health Educator job description, onboarding/training materials PPE org chart Charter Patient Intake Form Co-collaborated on Database build [identification of required data elements Health Educator interviews Initial IRB application

13 Vision The vision of the HI-AYA program is to improve health outcomes for adolescents and young adults with cancer in the five-state Intermountain West (Utah, Idaho, Montana, Nevada, and Wyoming).

14 Mission The mission of the HI-AYA (ages 15-39) program as approved by the HICCP Board of Trustee s includes: Develop a collaborative AYA program for the Intermountain West to provide appropriate care & support for this underserved population. Establish a peer-reviewed funding base for original research in AYA populations.

15 Strategy and Tactics Initially, utilize a non-disease-specific platform to develop the health educator/navigator position and subsequently catalyze the development of a comprehensive clinical/clinical research platform capable of developing and obtaining peer-reviewed funding and philanthropic support (1-3 years): Develop a bold and balanced governance, business, and research plan to administer an AYA clinical/clinical research program to enable and inform navigation and best practices. Define the responsibilities and obtain the authorities to build an appropriate and impactful platform. Develop working groups to build the disease-specific and cross-cutting core programs for this platform. Cross-cutting programs include cancer care delivery research (CCDR), care pathways throughout the continuum of care (entry, treatment, survivorship, palliative care, end of life), cancer prevention and control (including psychosocial and behavioral research), cancer informatics, quality, biorepository, communications, and digital engagement. Continue to develop and apply for peer-reviewed and/or philanthropic funding.

16 Relationships HICCP BoT HICCP Steering HI-AYA Best Practices Working Group Patient and Family Advisory Board Health Educator: Dx-Specific Working Groups Communications: Marketing & Digital Engagement Informatics: Tracking & Outcomes Database IRB: Biorepository & Clinical Trials & CCDR & Population Sciences Grants: Peer Reviewed Funding & Reporting Care Continuum: Care Pathways & Quality Measurement

17 HI-AYA Health Educator Advocate, liaison and informant to cancer patients (ages 15-39)/families for best practices National Academy of Medicine s AYA consensus statement NCCN guidelines. Navigation for AYAs & caregivers at Huntsman Cancer Institute, Intermountain Healthcare, and Community Clinics in the state of Utah (and beyond)

18 Duties 1. Patient Navigation/Education (50%) 2. Reports Volume/Outcomes and Tracking (EMR) (10%) 3. Compliance with National Guidelines and Monitoring (10%) 4. Program oversight report to Steering (10%) Maintains records, subject matter files, and correspondence Operations budget and monitors and reports the status of budget to the HI-AYA subcommittee on a quarterly basis 5. Inventory/Social Media/Access (10%) 6. Program Marketing/Raising Awareness (10%)

19 John Sweetenham, MD, FRCP, FACP Senior Director of Clinical Affairs and Executive Medical Director Huntsman Cancer Institute, University of Utah Donna Branson Director, Patient and Public Education R. Lor Randall, MD, FACS HCI HI-AYA Medical Director Carolyn Reynolds, APRN Intermountain Healthcare HI-AYA Co-Director Spanish-Speaking Patient Navigation (1.5 FTE) Community Outreach and Prevention Education (3.25 FTE) Jeff Yancey, PhD, MCHES Associate Director of Education Huntsman-Intermountain Adolescent and Young Adult (HI-AYA) Patient Navigation (1.0 FTE) Cancer Learning Center and Information Service (4.0 FTE)

20 HI-AYA Oncology Program Navigator Flow Frequency of interaction? Referral (Provider/social worker/etc.) Yes HI-AYA Navigator Initial Visit (near diagnosis) Patient entered into and tracked in the navigation database Follow up visits/calls/ interactions Self-Referral (Advertisements) Case Finding (EMR checking) Age between 15 and 39?* No Direct to other resources/other navigation services Intake questionnaire Navigator assessment of patient needs (logistical, emotional/ social, etc.) Resources made available based on needs assessed Final Visit/After 1 year *Current plan to limit to leukemia patients, but then will likely expand to other disease groups Concurrent Treatment Timeline Patient Assessment and follow up survivorship surveys Post-treatment: Contact with PCP, survivorship needs? End of life/palliative care Diagnosis Active Treatment Transition off-treatment Survivorship =Potential points of contact

21 Concluding Remarks GENUINELY collaborative with a team approach Underserved ( minority oncology) population Initially a health education mission (v1.0) Ambitious clinical care & academic agenda (v2.0) Utah Does! On behalf of the working group and the AYAs, thanks to all those that are believing in us!