The National Cancer Survivorship Resource Center

Transcription

1 The National Cancer Survivorship Resource Center Katherine Sharpe, M. T. S. Managing Director, Prevention & Survivorship Strategy American Cancer Society

2 The Survivorship Center Objectives Identify resources/programmatic gaps Develop and disseminate evidence-based solutions to address these gaps Help improve primary care providers knowledge of issues faced by cancer survivors Survivorship as a public health priority 2

3 Project Leadership Rebecca Cowens-Alvarado, MPH (ACS) Mandi Pratt-Chapman, MA (GWCI) Shelby Roberts, MPH (ACS) Jennifer Leonard, JD, MPH (GWCI) Jennifer Bretsch, MS (GWCI) Nicole Erb (ACS) Rachel Cannady (ACS) Patrice Bowles (ACS) Lorenzo Norris, MD (GWCI) Steven Patierno, PhD (GWCI) Katherine Sharpe, MTS (ACS) 3

4 The Survivorship Center Expert Panel The Survivorship Center Core Team (ACS, GWCI, CDC) Expert Panel Steering Committee Systems Policy & Practice: Clinical Survivorship Care Workgroup Policy Advocacy Workgroup Quality of Life: Information Delivery Workgroup Quality of Life: Programs and Navigation Workgroup 4

5 Socio-Ecological Approach to Advancing Survivorship Society / Policy Level Health Care System Level Cancer Survivor Level 5

6 Socio-Ecological Approach Society / Policy Level Health Care System Level Cancer Survivor Level 6

7 Workgroup Members Quality of Life: Information Delivery Natasha Buchanan, PhD Colleen Doyle, MS Roshini George, MA, MBA Paul Jacobsen, PhD Al Marcus, PhD Deborah Mayer, PHD, RN, AOCN, FAAN Pamela Meyerhoffer, FAHP Anna Napoles, MPH, PhD Richard Payne, MD Lillie Shockney, RN Annette Stanton, PhD Marjorie Van Der Pas, MS Dawn Wiatrek, PhD Anne Willis, MA Amy Zhang, PhD 7

8 Quality of Life: Information Delivery Gaps Identified ❶ Gaps in the availability of information on cancer survivorship. ❷ Need for a tool to assist survivors with information seeking. ❸ Gaps in communication between survivors and providers. 8

9 The Survivorship Center Gap Filler Survivorship Information Resource Inventory 357 post-treatment survivorship resources 249 Multimedia channels Web Call Center Video Pod Cast Text 108 Print channels Brochure/Booklet Fact Sheets Action Plan/Care Plan Magazine Newsletter 9

10 The Survivorship Center Gap Filler 10

11 The Survivorship Center Gap Filler Life After Treatment Guide Tips to sort through information found online to determine if it is current, correct, and applicable Treatment Summary and Survivorship Care Plan Common long-term/late effects Health and wellness Online resources 11

12 The Survivorship Center Gap Filler Prescription for Cancer Information 12

13 Workgroup Members Quality of Life: Programs and Navigation Kimlin Ashing-Giwa, PhD Jennifer Bires, LGSW Rachel Cannady, BS Diane Davies Angelina Esparza, RN, MPH Ann Fairchild, LCSW, OSW-C Greta Greer, MSW Elizabeth Hatcher, BSN, RN Lovell A. Jones, PhD Jennifer Klemp, MPH, PhD Corinne Leach, PhD, MPH, MS Mary McCabe, RN, MA Pam Milberg Erin Moaratty Steven Patierno, PhD Barbara Rabinowitz, PhD, MSW, RN Rian Rodriguez, MPH Elizabeth Rohan Kevin Stein, PhD Anne Willis, MA Michael Zincone 13

14 Quality of Life: Programs and Navigation Gaps Identified ❶ Need to create a consensus-based definition of a cancer survivorship program. ❷ Need to increase evidence-based survivorship programs. 14

15 The Survivorship Center Gap Filler Cancer Survivorship Program Definition The goal of a cancer survivorship program is to maximize the quality of life of survivors and their caregivers. The program should include a comprehensive set of services provided by multidisciplinary groups working together to assure effective medical care, education and emotional support. Communication between and among survivors, their caregivers and providers is essential for the seamless referral, navigation and coordination of these services. 15

16 The Survivorship Center Gap Filler Moving Beyond Patient Satisfaction: Tips to Measure Program Impact Includes and extends basic evaluation questions Participant satisfaction Program attrition Past participant referrals Evaluating program impact on quality of life Domain-specific Programs or Interventions Physical Psychological Social Spiritual 16

17 The Survivorship Center Gap Filler Moving Beyond Patient Satisfaction: Tips to Measure Program Impact Domain Program/Intervention Indicators Measures Physical Functioning Fatigue Physical Activity Decreased fatigue; improved sleep; increased number of survivors using fatigue self-management strategies Psychological Functioning Depression Coping Skills Training (Cognitive-Behavioral Therapy) + Psychoeducation Increased interest in activities; increased feelings of worthiness; decreased feelings of guilt; increased level of energy; improved level of concentration; decreased sadness Brief Fatigue Inventory; Fatigue Symptom Inventory; Pittsburgh Sleep Quality Index Beck Depression Inventory; Center for Epidemiologic Studies-Depression; Hospital Anxiety and Depression Scale; Patient Health Questionnaire-9 17

18 The Survivorship Center Gap Filler Cancer Survivor Program Resource Inventory Post-treatment survivorship resources Online repository Identify promising practices 18

19 The Survivorship Center Gap Filler Cancer Survivor Program Resource Inventory 2 ACS Divisions: Florida and New England National Cancer Institute s Community Cancer Center Program (NCCCP) 19 consented; 16 responded (84% response rate) 62% reported >5 survivorship programs/support services 19

20 Socio-Ecological Approach Society / Policy Level Health Care System Level Cancer Survivor Level 20

21 Workgroup Members Clinical Survivorship Care Workgroup Anthony Back Fran Becker, LCSW Mandi Pratt Chapman, MA Rebecca Cowens-Alvarado, MPH Denice Economou, RN, MN, CNS, AOCN Stephen Edge, MD Michael Feuerstein, PhD, MPH, ABPP Michele Galioto, RN, MSN Patti Ganz, MD Daniel M. Hayes, MD Chi-Hyun Kim, MD Sallyann Coleman King, MD, MSc Samuel LaMonte, MD Len Lichtenfeld, MD Joan McClure Ken Miller, MD Lorenzo Norris, MD Guadalupe Palos, PhD, RN, LMSW Brandy L. Peaker, MD, MPH Julia Rowland, PhD Sue Sabatino Laura Seeff, MD Katherine Sharpe, MTS Julie Silver, MD Carrie Tilley, CRNP Stephanie Van Winkle Frank Wilson, MD, FACR, FASTRO Donna S. Zhukovsky, MD, FACP, FAAHPM 21

22 Gaps Identified Clinical Survivorship Care 1. Lack of clinical survivorship care guidelines. 2. Lack of clarity on which health care professionals should be responsible for clinical survivorship care. 3. Variations in the availability of and services provided for post-treatment survivorship care. 4. Gaps in clinical information on survivorship, education and training of health care professionals. 22

23 Guideline Development: Beginning to Fill the Gaps Target audience is primary care providers Offers comprehensive, patient-centered care Management of late/ long-term effects Psychosocial recommendations Screening, surveillance for new/recurrent cancers Prevention and routine health recommendations Coordination among specialists and PCPs Train health care provider teams on delivering survivorship care 23

24 Guideline Development Phase 1: Gathered draft guideline content from survivorship experts based on clinical practice Phase 2: Developing guidelines by cancer type based on literature reviews, evidence, and experts 24

25 Socio-Ecological Approach Society / Policy Level Health Care System Level Cancer Survivor Level 25

26 Workgroup Members Policy Advocacy Workgroup Betsy J. Clark, PhD, ACSW, MPH Mandi Pratt Chapman, MA Rebecca Cowens-Alvarado, MPH Nancy Davenport-Ennis Richard Deming, MD Lewis Foxhall, MD Aaron Gilson, MS, MSSW, PhD Tom Kean, MPH Rebecca Kirch, JD Jennifer Leonard, JD, MPH Staci Lofton Susan Matsuko Shinagawa Diane Meier, MD, FACP Andy Miller, MHSE, CHES Joanna Morales, Esq. Lynn Nonnemaker Margaret O Grady, RN, MSN, OCN, FAAMA Shelby Roberts, MPH Eric Sandler, MD Kate Shafer, LICSW Nicole Tapay Zelma Watkins 26

27 Gaps Identified Society / Policy 1. Gaps in financial reimbursement of clinical survivorship services. 2. Gaps in research funding and limited evidence base on which to base policy recommendations. 3. Need to establish which operational or organizational structure is most effective and efficient in delivering survivorship care. 4. Lack of information on the costs and benefits of providing clinical survivorship care. 27

28 Cancer Survivorship White Paper Series 1. Current models of survivorship care and the challenges in delivering survivorship care 2. Services requested for survivorship care 3. Reimbursement for survivorship care 4. Survivorship research 28

29 The Survivorship Center Research

30 Self-Management for Survivors Pilot the Stanford University Self-Management online course RCT recruitment begins summer / fall 2012 Evaluation complete by spring

31 Post-treatment Transition Study: ACS Research The Post-Treatment Transition Study will identify and prioritize gaps in information and resources for cancer survivors as they transition from active treatment back to the community care setting. The study will examine perceived preparedness in breast, colorectal, and prostate cancer survivors within the first two years of completing primary treatment and is intended to inform the development of the National Cancer Survivorship Resource Center and other ACS activities. Co-Principal Investigators: Corinne Leach, PhD, MPH American Cancer Society Dawn Wiatrek, PhD American Cancer Society Co-Investigators: Kevin Stein, PhD American Cancer Society Katherine Sharpe, MTS American Cancer Society Tenbroeck Smith, MA American Cancer Society Study Collaborators: Annette Stanton, PhD UCLA, Department of Psychology and Jonsson Comprehensive Cancer Center Michael Diefenbach, PhD Mount Sinai School of Medicine 31

32 Conceptual Cost Models To develop conceptual models for clinical costs of providing care to cancer survivors in four different health care settings (Academic medical center, community cancer center, county cancer center, primary care medical groups) to add evidence based cost information to care delivery models used by health care systems and other providers of survivorship care Examining the cost-effectiveness of a cancer survivorship selfmanagement program on post-treatment survivors. 32

33 Gaps in Addressing Post-Treatment Survivorship Issues Population Gaps Survivors Gaps in the availability of evidence based information, resources and programs on cancer survivorship Need for a tool to assist survivors with information seeking to alleviate information overload and recognize issues in information quality Gaps in tools to empower survivors to manage survivorship care Lack of consensus definition on survivorship programs Health Care Systems Lack of clinical survivorship care guidelines Lack of clarity on which HCP s should be responsible for clinical survivorship care Variations in the knowledge about and availability of services provided for post-treatment care Gaps in clinical information on survivorship, education and training of HCP s Society / Policy Gaps in financial reimbursement of clinical survivorship services Gaps in research funding and limited evidence base on which to base policy recommendations Need to establish with infrastructure is most effective and efficient in delivering survivorship care Lack of information on the costs and benefits of providing clinical survivorship care 33

34 Population Recommendations to Address Post-Treatment Survivorship Issues Recommendations Survivors Refinement of chronic disease self-management model for cancer survivorship to help empower survivors to manage their survivorship care Develop evidence based, culturally appropriate information and resources to meet the needs of posttreatment survivors Increase awareness of existing survivorship information and resources Health Care Systems Develop survivorship care guidance for clinical and psychosocial needs Routine provision of survivorship care plans Education & training of health care professionals Society / Policy Reimbursement for essential post-treatment survivorship care Funding for survivorship research to increase evidence base Education of policy makers to increase awareness of survivorship issues 34 34

35 Going Forward Disseminate guidance among a wide variety of professionals caring for post-treatment cancer survivors Develop materials to support implementation of clinical care guidance. Develop provider education tools and resources and deliver education to PCPs Continue the development of policy resources to elevate survivorship as a public health priority. Continue enrollment in the online self-management randomized control trial and begin follow-up surveys of control and study participants. Develop and deliver tools to assist CCCPs in implementing survivorship activities outlined in their CCC plans. 35

36 The Survivorship Center is funded by the Centers for Disease Control and Prevention Cooperative Agreement #1U55DP