Survivorship and Palliative Care

1. Survivorship and Palliative Care Julia H. Rowland, PhD Office of Cancer Survivorship, NCI NCCCP Launch June 25, 2007

2. Who is a ‘survivor?’ • Philosophically, anyone who has been diagnosed with cancer is a survivor— from the time of diagnosis to the end of life • Caregivers and family members are also cancer survivors (Source: NCCS, 1986)

3. Major Reports on Survivorship

4. Estimated Number of Cancer Survivors in the United States from 1971 to 2004 Data source: Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Howlader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2004, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2004/, based on November 2006 SEER data submission, posted to the SEER web site, 2007.

5. Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2004 by Time From Diagnosis and Gender (Invasive/1st Primary Cases Only, N = 10.8M survivors) Data source: Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Howlader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2004, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2004/, based on November 2006 SEER data submission, posted to the SEER web site, 2007.

6. Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2004 by Current Age (Invasive/1st Primary Cases Only, N=10.8M survivors) Data source: Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Howlader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2004, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2004/, based on November 2006 SEER data submission, posted to the SEER web site, 2007.

7. The Changing Demography of Cancer Survivorship • 66% of adults diagnosed with cancer today will be alive five years from now • Among children, the 10 year relative survival rate is approaching 75%. • Over 80% of all cancer patients are treated in the community • Cancer for many has become a chronic illness • Cancer is for most, a family illness

8. Late Effects of Cancer Treatment • Physical/Medical(e.g., second cancers, cardiac dysfunction, pain, lymphedema, sexual impairment) • Psychological (e.g., depression, anxiety, uncertainty, isolation, altered body image) • Social (e.g., changes in interpersonal relationships, concerns regarding health or life insurance, job lock/loss, return to school, financial burden) • Existential and Spiritual Issues (e.g., sense of purpose or meaning, appreciation of life)

9. What are Survivors Telling Us? • They want to know how to cope with and reduce the morbidity associated with their illness. • They expect their healthcare providers to help address these issues, but are often unsure of whom to ask or what may be available to them. • They are also worried about the health of their family members. • Early interventions for those in ‘distress’ can affect both quality and length of life outcomes.

10. What is the research telling us? • 3 factors important to cancer patients’ & survivors’ health-related outcomes (both QOL and survival) are: • Having access to state of the art care • Being active in one’s care • Having or perceiving adequate social support Key to all of the above, is access to appropriate, accurate and timely information and education.

11. Key Program Components • Comprehensive Psychosocial Care Provided / Available • At time of diagnosis • During Treatment • Post Treatment • Recurrence/Progression • End of life • Services Provided to • Patients • Survivors • Family/Caregivers

12. Key Program Components • Continuity/Coordination of Care • Referral to appropriate psychosocial programs/resources • “Handoff’’ to Primary Care post-treatment; treatment summaries; communication between and among providers and with patients • Referral to / Use of hospice or pain and/or palliative care services

13. Key Program Components • Education about Psychosocial & Palliative Care Issues in Cancer • Healthcare professional • Consumer: Patients/Survivors, Family Members, Public

14. Key Program Components • Focus on the Patient/Survivor/Caregiver Experience • HRQOL: health-related quality of life • QOC: quality of care metrics

15. Sample Research Questions:Baseline • What are the types of services patient/survivors and their families need across the course of their cancer care? • What psychosocial, pain & palliative care programs and services are currently available at each site to meet these needs and how are they being used? • For sites with no/limited psychosocial or pain & palliative care service: What is the feasibility of establishing these? • Do those finishing cancer therapy receive a treatment summary and care plan?

16. Sample Research Questions:Follow-up • What information resources and supportive services were added in response to needs identified by patients in year 1? Have these resources shown benefit? • Has training with providers resulted in increased referral to psychosocial or pain & palliative care services? • What proportion of patients finishing cancer treatment now receive a summary and care plan? • Do these programmatic changes improve patients/survivors perceived HRQOL and quality of care?

17. Changing the Culture of Research and Care The PATIENT is as important as the TUMOR