Survivorship Care Plans in the U.S.: Current Status and Future Challenges

1. Survivorship Care Plans in the U.S.: Current Status and Future Challenges Carrie Tompkins Stricker, PhD, CRNP, AOCN® Chief Clinical Officer On Q Health, Inc. Oncology Nurse Practitioner Abramson Cancer Center University of Pennsylvania

2. Disclosures • On Q Health, Inc. – Officer and stock owner

3. Objectives • To provide a brief history of cancer survivorship in the U.S. • To overview the current and evolving status of cancer survivorship care delivery in the U.S. – Goals, challenges, models, & care plans • To discuss innovation & future directions in survivorship care delivery – Including survivorship care plans

4. Data source: Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR, Clegg L, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2005, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission, posted to the SEER web site, 2008. -Also: http://seer.cancer.gov/csr/1975_2008/, - Siegel, Naishadham, & Jemal, 2013. CA: Ca J Clin 2013; 63: 11-30v. Cancer survivors growing in number •*13.7million* •as of 1/1/13 Despite decline in incidence rates of 1.8%/yr in men and 1.5%/yr in women

5. Profile of U.S. Cancer Survivors • Over 13 million in the U.S. – will double by 2050 • Lifetime probability cancer is high – 45% for men, 38% for women • 68% of adults diagnosed can expect to be alive in 5 years - Siegel, Naishadham, & Jemal, 2013. CA: Ca J Clin 2013; 63: 11-30v. - http://www.iarc.fr/en/media-centre/iarcnews/2011/globocan2008-prev.php

6. Cancer survivor, vs. cancer survivorship care • Cancer survivor (NCCS definition) – Anyone diagnosed with cancer, from the time of diagnosis and for the balance of life

7. Cancer Survivorship Care Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.

8. Why a special focus on cancer survivorship care?

9. Well, finally! I thought this thing would never end!!!

10. Institute of Medicine Report (2005)

11. From cancer patient to cancer survivor On treatment Post-treatment … Lost in transition

12. Cancer survivorship: What are the issues? • Cancer survivors are: – seen less often by the cancer care team – at risk for many possible late effects of treatment – have many unmet needs • psychological, social concerns • persistent symptoms • functional recovery - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost inTransition. The National Academies Press: Washington, D.C.;

13. Experiences of Cancer Survivors LIVESTRONGTM Survey (2010) N=3129 post-treatment survivors • 98% reported > 1 problem as a result of cancer – Physical problems (86%) • Energy, concentration, sexual dysfunction, neuropathy, pain were most highly endorsed – Emotional concerns (93%) – Financial & job related concerns (58%) LIVESTRONG Report (2010). Accessed at http://www.livestrong.org/pdfs/3-0/LSSurvivorSurveyReport_final

14. LIVESTRONGTM survey: Care patterns – Receipt of care for reported problems • Physical problems - 58% – Although less than ½ received care for top 4* • Emotional concerns - 50% • Practical concerns - 20% *Energy, concentration, sexual dysfunction, neuropathy

15. Cancer survivorship: What are the issues? • Health care providers of survivors – Are often focused on other issues – Often lack knowledge about survivorship – Cannot keep up with demand - Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217 - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.

16. Primary care providers lack knowledge about cancer survivorship • Primary care provider (PCP) knowledge of chemotherapy effects Cancer Drug % of PCPs that correctly ID’ed late effects (n = 1,072) Cyclophosphamide 15% correctly identified premature menopause; 17% correctly identified secondary malignancy as late effect Oxaliplatin 22% correctly identified peripheral neuropathy Paclitaxel 22% correctly identified peripheral neuropathy Doxorubicin 55% correctly identified cardiac dysfunction Only 6% of PCPs were able to correctly identify all late effects Nekhlyudov L, Aziz N, Lerro CC, Virgo K. Presented June 2, 2012. ASCO Annual Meeting. Abstract 6008] UPDATE

17. Projected Supply of & Demand for Oncologists ASCO Workforce Report, JOP, 2007

18. Cancer survivorship: What are the issues? • Care for cancer survivors – is often not standardized – is not personalized – is poorly coordinated • Both under- and over-utilization of services is common – is highly variable in quality - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.

19. Surveillance tests are underutilized • Cancer surveillance – 38% of older breast cancer survivors do not receive annual mammography[2] • Late effects surveillance – Only 14% to 26% of prostate cancer survivors at risk for osteoporosis are screened/treated[3,4] – 80% of Hodgkin’s Disease survivors s/p mantle radiotherapy do not undergo recommended echocardiograms[4 1. Salloum et al., 2012; 2. Schapira et al., 2000; 3.Tanvetyanon T. Cancer. 2005;103:237-241. 4. Yee EF, et al. J Gen Intern Med. 2007;22:1305-1310. Oeffinger, K.C., et al., Pediatric Blood & • Cancer, 2010. 56(5): p. 818-824.

20. Identifying Potential Solutions Institute of Medicine (IOM) report, 2005

21. IOM Recommendation #1: • Health care providers… & other stakeholders should work to raise awareness of cancer survivors needs… and act to ensure the delivery of appropriate cancer survivorship care

22. Survivorship care: What are the elements? • Prevention of new & recurrent cancers, and of other late effects • Surveillance for cancer and late effects • Intervention for effects of cancer and its treatment • Coordination between specialty & primary care •Institute of Medicine & National Research Council, 2006

23. IOM Recommendation #1: • “Act together to ensure the delivery of appropriate cancer survivorship care” …. But HOW?

24. Survivorship Care: Milestones Excellence centers established • 2005: • LIVESTRONGTM Centers of Excellence Network - models of care in academia and community • 2008 • American Cancer Society (ACS) establishes National Cancer Survivorship Resource Center with George Washington University Insert Network diagram and LOGO

25. Models of Care established Clinical Models • Multidisciplinary • Disease specific • Consultative service • Integrated Care Model • Others – “Shared Care” model an umbrella for several Providers • MD • Oncologist • Primary care • Nurse Practitioners • Oncology • Primary care • Combined MD/NP • Nurse navigators

26. Guidelines and pathways upon which to base models • 2006 – 1st ASCO Survivorship guideline (fertility preservation) • 2011 – LIVESTRONG Essential Elements of Care • 2013 – National Comprehensive Cancer Network (NCCN) publishes first Survivorship guidelines Survivorship Care: Milestones

27. IOM Recommendation #1: • “Act together to ensure the delivery of appropriate cancer survivorship care” …. How ELSE?

28. IOM Recommendation #2: Survivorship care plans “Patients completing primary treatment should be provided with a comprehensive: 1. Cancer treatment summary 2. Follow-up (survivorship) care plan … that is clearly and effectively explained Hewitt, Greenfield, & Stovall (2006). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C. (p. 151).

29. Survivorship care plans: Components • Cancer type, treatments, complications • Possible consequences, including late effects • Timing, content, & coordination of follow-up care, surveillance, – Including health promotion, healthy living • Resources & referrals, including psychosocial services •Hewitt, Greenfield, & Stovall (2006). From Cancer Patient to Cancer Survivor: Lost in •Transition. The National Academies Press: Washington, D.C. (p. 151).

30. Survivorship care plans • Examples

31. Journey Forward

32. LIVESTRONG Care Plan

33. Survivorship care plans: Current status in the U.S. • Limited reach • Time-consuming and inefficient • Narrow focus – Little attention to psychosocial needs, health promotion • Personalization to individual needs lacking

34. Survivorship Care Plans (SCPs): Limited reach • NCI-designated (university) cancer centers1 – 43% of centers deliver SCPs to breast or colorectal cancer survivors • Nationwide (U.S.) randomized sample2 of community and academic centers – <10 % of oncologists delivered SCPs – <5% delivered SCPs that outlined responsibility for care 1. Salz et al. 2012; 2. Blanch-Hartigan et al., 2014.

35. SCPs: Time-consuming & inefficient • LIVESTRONGTM Center of Excellence Network of academic & community cancer centers (n = 13) – Reach • Most sites (2/3) serve <10% of breast cancer survivors – Average time to prepare and deliver SCP • 2 ½ - 3 hours per patient • Chart abstraction: > 1 hour for > 1/3 of sites Stricker C, Jacobs L, Risendal B, et al: Journal of Cancer Survivorship 5:358-370, 2011.

36. Why so time consuming to prepare SCPs? • Cancer care occurs in many settings • Communication and information-sharing is poor • No centralized (electronic) medical record • Survivors’ needs vary and are not systematically addressed Dulko et al. (2013). Oncol Nsg Forum 40: 575-80.

37. Survivorship Care Plans (SCPs): Gaps in content • N = 65 SCPs in 13 LIVESTRONG centers – Content areas poorly addressed • Supportive care provided • Coordination of care; referrals • Psychosocial effects • Healthy living • Relatives cancer risk & need for surveillance Stricker, C.T., Jacobs, L.A., Risendal, B. et al. Journal of Cancer Survivorship (in press)

38. Survivorship care plans (SCPs): “Helpful, but not good enough” • Key patient perspectives on SCPs delivered in LIVESTRONG network study – Information helpful; “wish I had received it sooner” – Personalization needed • So much information is overwhelming • “What is relevant to me?” – Need for more actionable information • What to report, to whom • Healthy living recommendations Unpublished data; Stricker, Jacobs, Palmer et al

39. SCPs: Improving beyond the current state • Extending reach – Mandating delivery – Modifying requirements, templates – Improving efficiency – Reimbursing delivery? • Improving content – Guidelines, pathways – Psychosocial emphasis (IOM report) Birken et al. (2014). Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

40. Survivorship Care Plans: Mandatory for many in 2015 • The Commission on Cancer (CoC) accredits cancer centers who meet CoC standards – 71% of cancer patients are treated in CoC accredited centers • CoC Standard 3.3 – Requires a comprehensive care summary & follow-up plan to patients with cancer completing curative cancer treatment – Must be implemented by 1/1/2015 •Commission on Cancer, 2011. Cancer Program Standards: Ensuring Patient – Centered Care

41. Readiness survey of CoC member institutions (early 2014) • Only 37 percent "completely confident” in ability to implement SCP by 2015 • Only 21% had developed a SCP process …. the CoC responds… Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

42. Commission on Cancer Standard 3.3: updated 9/9/14 • Target population – 10% of all patients by 1/1/15 – 100% by 1/1/19 – Focus on high volume malignancies first • Breast, colorectal, lung, lymphoma, prostate • Content specifications – Modified to be more achievable (ASCO template) Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

43. American Society of Clinical Oncology (ASCO) template: 2014 update http://www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf

44. ASCO Treatment Summary - less detail now required http://www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf

45. Improving efficiency through data interfaces CANCER REGISTRY MEDICAL RECORDS

46. SCPs: Improving beyond the current state • Extending reach – Mandating delivery – Modifying requirements, templates – Improving efficiency – Reimbursing delivery? • Improving content – Guidelines, pathways – More patient-centered focus Birken et al. (2014). Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

48. ASCO Follow up Care Plan - now more patient-centered • Oncology team contacts & schedule of follow up visits* • Cancer surveillance tests for recurrence • Cancer screening for early detection of new primaries • Possible symptoms of cancer recurrence to report • Late- and/or long-term effects (symptoms to report) • Non-medical concerns (e.g. emotional or mental health, parenting, work/employment, financial issues, and insurance) • Health behaviors, health promotion *who, how often, and where

49. Survivorship care plans: Remaining challenges • Care planning across the cancer continuum – Treatment planning from diagnosis – Patients with non-curable disease • Personalization of care plans – to patient characteristics, concerns Birken et al. (2014).; Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

50. Expanding our vision of survivorship • Cancer survivor (NCCS definition) – Anyone diagnosed with cancer, from the time of diagnosis and for the balance of life • Many critical “survivorship” issues must be addressed from time of diagnosis – e.g., fertility, genetics, education about potential symptoms and late effects

51. 56 IOM: Domains of the Cancer Care Continuum

52. Personalized care across the cancer continuum • Innovative solutions are needed

53. The On Q Care Planning System (CPS)TM allows cancer teams to deliver personalized care plans to patients in real-time To deliver care plans, On Q collects patient- reported outcomes (PROs) and clinical information for use by a rules engine - integrate patient goals, symptoms, concerns, and preferences •59 New solution: On Q Health, Inc.

54. Enters limited clinical data* On Q Rules Engine App generates CDS for oncologists via a customized draft patient care plan that incorporates relevant oncology quality standards, current research •PROPRIETARY & CONFIDENTIAL •60CDS = Clinical Decision Support *Temporary solution until HL-7 interfaces are available. Patient completes a disease and treatment-specific questionnaire on a mobile device at each visit. Care Team Patient Oncologist finalizes and nurse counsels patient on care plan recommendations What is the On Q CPS™? Patient e-reports outcomes of previously recommended interventions. Patients to receive a care plan at each clinical encounter with their oncologist.

55. • On Q offers survivorship care plans as one component of its care planning system • How are On Q survivorship care plans different? – Highly personalized • To both patient and institution – Prospective, longitudinal – Concise, clear guidance – Comprehensive, continuously updated content •CONFIDENTIAL AND PROPRIETARY •61 On Q Survivorship Care Plans

56. On Q CPS™ Survivorship care plans: Surveillance and follow-up •CONFIDENTIAL AND PROPRIETARY •63 Supports coordination of care

57. On Q Survivorship care plans: Late effects education & health promotion •CONFIDENTIAL AND PROPRIETARY •64 • Personalized, concise, and actionable • Healthy living information • Local resources

58. • Also provides personalized supportive care plans – Management of existing symptoms and psychosocial care issues – Personalized healthy living advice •CONFIDENTIAL AND PROPRIETARY •65 On Q CPSTM Care Plans

59. •CONFIDENTIAL AND PROPRIETARY •66 On Q CPS™: Psychosocial assessment is linked to….

60. … Psychosocial care management •CONFIDENTIAL AND PROPRIETARY •67 Localized referrals and support for psychosocial distress

61. Survivorship care plans: Future challenges • Documenting outcomes of SCPs – Few well-designed studies to date • Improving coordination of care – Clear definition of responsibility • Longitudinal care delivery – Not just “one and done” – Adherence and tracking • Dealing with workforce issues

62. Considerations for cancer survivorship care in Japan • Unmet needs of survivors in Japan – Some similarities with U.S. survivors – Also have important differences • Preferences for support – Greater desire for peer support

63. Cancer survivors in Japan have unmet needs • N = 628 Japanese cancer survivors – Mostly lung, breast, colorectal, urologic cancer • Unmet needs – 25.7% had > 2 unmet needs – Constant over time – Highest in “medical-psychological”, financial • Fear of recurrence = 17.4% • Financial = 17.8% • Employment = 14.5% – Lowest in physical, sexual domains Umezawa et al. (2014). Prevalence, associated factors, and source of support concerning supportive care needs among Japanese cancer survivors. Psycho-Oncology DOI: 10.1002/pon.3702

64. Survivors in Japan prefer but lack peer support for unmet needs N = 628 cancer survivors - Psychological and financial needs highest

65. Cancer survivors in Japan: Other concerns • Young breast cancer survivors – (30.7%) unsatisfied with ‘‘overall communication with medical professionals” Miyashita M et al. 2014;

66. Conclusions • Cancer survivors experience many unique needs that often remain unmet – Capturing survivors voices is critical • Systematic yet personalized approaches are needed to improve quality – Should consider personal and cultural differences • Infrastructure and technology solutions needed to maximize effect • Additional research needed

67. In spite of the uncertainties, there can still be good quality of life after cancer!

Survivorship Care Plans in the U.S.: Current Status and Future Challenges

Survivorship Care Plans in the U.S.: Current Status and Future Challenges

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Survivorship Care Plans in the U.S.: Current Status and Future Challenges