Smooth Transitions: Utilizing Survivorship Care Plans to Improve Follow-Up in both Oncology and Non-Oncology Settings

Transcription

1 Smooth Transitions: Utilizing Survivorship Care Plans to Improve Follow-Up in both Oncology and Non-Oncology Settings Susan Leigh, BSN, RN Survivorship Navigator Arizona Oncology Tucson Vida! Educational Series

2 Educational Objectives Define cancer survivorship in relation to trends and characteristics Introduce examples of physiologic and psychosocial impacts of surviving cancer. Identify key elements of treatment summaries and survivorship care plans

3 Number 12,000,000 Estimated Number of Cancer Survivors in the United States from 1971 to ,000,000 8,000,000 6,000,000 4,000,000 2,000, : NCCS established Year 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, , National Cancer Institute. Bethesda, MD, based on November 2006 SEER data submission, posted to the SEER web site, 2007.

4 Characteristics of the 11.4 Million Survivors Age Distribution, Years (4%) <19 Years (1%) Estimated Number of Survivors by Diagnosis, Thyroid (4%) Female Breast (23%) Years (35%) 65+ Years (60%) Melanoma (7%) Urinary (7%) Hematologic (8%) Gynecologic (9%) Colorectal (10%) Prostate (20%) 1. National Cancer Institute, National Institutes of Health. Estimated US Cancer Prevalence. Accessed May 7, 2010, from 4

5 Cancer Survivorship Figures As of January 2012, it is estimated that there are 13.7 million cancer survivors in the U.S., representing approximately 4% of the population. Approximately 15% of survivors were diagnosed 20 or more years ago. Today, 68% of adults diagnosed with cancer will be alive in five years. Among children, over 75% of childhood cancer survivors will be alive after 10 years. Siegel, R., DeSantis, C., Virgo, K., et al. (2012), Cancer Treatment and Survivorship Statistics, CA: A Cancer Journal for Clinicians. doi: /caac

6 American Cancer Society Cancer Facts & Figures 2012 Cancer Treatment & Survivorship Facts & Figures

7 Who is a Survivor????

8 How Will We Define our Population? Multiple ways to define a survivor

9 National Coalition for Cancer Survivorship (NCCS) The experience of living with, through or beyond cancer. Begins at the moment of diagnosis and continues until the end of life. (Mullan, Carter, Leigh for NCCS)

10 Seasons of Survival Mullan F. N Engl J Med. 1985;313(4): Acute Stage Diagnosis Treatment Extended Stage Remission Maintenance Permanent Stage Long-term survival Cure

11 Seasons of Survival Mullan F. N Engl J Med. 1985;313(4): Acute Stage Transition Stage Extended Stage Permanent Stage Final Stage

12 Today s FOCUS.. Acute Stage Transition stage Extended Stage Remission Maintenance Permanent Stage Long-term survival Final Stage End of Life

13 Survivors Patients Victors Sufferers Activists Warriors Veterans Thrivers Advocates The Blessed Cancer Fighters Cancer Conquerors Cancer Killers Luxury of Labeling

14 After Treatment Ends.

15 Multiple Paths to Survivorship Living cancer-free for the remainder of life Living cancer-free for many years but experiencing one or more serious, late complications of treatment Living cancer-free for many years, but dying after a late recurrence Living cancer-free after the first cancer is treated, but developing a second cancer Living with intermittent periods of active disease requiring treatment Living with cancer continuously without a diseasefree period (ACS Survivorship Facts & Figures 2013)

16 Quality of Life Model Applied to Physical Well Being and Symptoms Functional Activities Strength/Fatigue Sleep and Rest Overall Physical Health Fertility Pain Cancer Survivors Psychological Well Being Control Anxiety Depression Enjoyment/Leisure Fear of Recurrence Cognition/Attention Distress of Diagnosis and Control of Treatment Social Well Being Family Distress Roles and Relationships Affection/Sexual Function Appearance Enjoyment Isolation Finances Work Cancer Survivorship Spiritual Well Being Meaning of Illness Religiosity Transcendence Hope Uncertainty Inner Strength Ferrell, BR and Grant, M. City of Hope Beckman Research Institute(2004)

17 Long-term and Late Effects of Cancer and Cancer Treatment Long-term Effects Side effects that begin during treatment and continue after completion of primary therapy e.g., peripheral neuropathy, fatigue, chronic pain, erectile dysfunction Late Effects Toxicities that are not apparent during primary treatment but manifest clinically some time later 1 e.g., lymphedema, osteoporosis, second cancers from radiation or chemotherapy, 1. Earle C. J Clin Oncol. 2006;24(32):

18 Late Effects SURGERY 1,2 Head and neck: Difficulties with communication, swallowing, and breathing; cosmetic; damage to muscles affecting movement Neurologic structures (brain, spinal cord): Impairment of cognitive function, motor sensory function, vision, swallowing, language, bowel and bladder control Abdominal surgery: Risk of intestinal obstruction, hernia, altered bowel function Removal of spleen: Impaired immune function, increased risk of sepsis hernia Ostomy: Bowel obstruction, constipation, nausea, vomiting, loss of appetite, fatigue, poor body image Oophorectomy: Premature menopause and infertility Orchiectomy: Infertility, testosterone deficiency Lung resection: Difficulty breathing, fatigue, generalized weakness Amputation; limb-sparing procedures: Functional changes; cosmetic deformity; psychosocial impact; accelerated arthritis in other joints; postsurgical, phantom, and/or neuropathic pain Pelvic surgery: Sexual dysfunction, incontinence, hernia, risk of intestinal obstruction Removal of lymph nodes: Lymphedema, retrograde ejaculation in testicular cancer Prostatectomy: Urinary incontinence, sexual dysfunction, poor body image 1. Ganz P. Sem Oncol Nurs 2001;17(4): Hewitt M, et al. Committee on Cancer Survivorship. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press;

19 Late Effects/Organ System RADIATION 1,2 Central Nervous System: Problems with thinking, learning, memory; structural changes to brain, bleeding into brain Pulmonary: Lung scarring, decreased lung function Hepatic: Hypertension, impaired kidney function Renal: Hypertension, impaired kidney function Genitourinary: Bladder scarring, small bladder capacity Bone and Soft Tissue: Atrophy, deformity, fibrosis, abnormal growth, bone death Pituitary: hormone deficiencies Endocrine- Endocrine- Cardiovascular: Scarring or inflammation of the heart, coronary artery disease; scarring of heart sac (pericardium) Gastrointestinal: Thyroid: Low thyroid function, hypothyroidism, thyroid nodules Malabsorption, intestinal stricture Endocrine-gonadal: Men: Sterility, testosterone deficiency; Women: Sterility, premature menopause Lymphatic: Lymphedema Hematologic: Low blood counts, myelodysplastic syndrome and acute leukemia 1. Ganz P. Sem Oncol Nurs. 2001;17(4): Hewitt M, et al. Committee on Cancer Survivorship. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press;

20 Late Effects of Chemotherapy Breast Cancer (examples) Fatigue Neuropathy Cognitive dysfunction Weight gain Sexual dysfunction Psychological distress Ovarian failure with associated menopausal symptoms Osteoporosis from premature ovarian failure Increased risk of leukemia** Increased risk of cardiac dysfunction**

21 Late Effects of Hormonal Therapy Breast Cancer (examples) Hot flashes Increased risk of stroke Increased risk of uterine cancer Increased risk of blood clots Increased risk of osteoporosis Increased risk of fractures Vaginal dryness Arthralgias

22 What Determines Risk? Co-morbidities Type and severity of disease Genetics Exposure Drug treatment Radiation field Surgical site

23 The Big Bang

24 From Cancer Patient to Cancer Survivor: Lost in Transition (IOM) Cancer is often a chronic condition, but is not treated as one. When treatment ends, most cancer survivors do not have a follow-up care plan or treatment summary. Surviving cancer is something to celebrate, but it is not the end of the road. Cancer changes your life forever, and it also changes your healthcare needs forever.

25 Goals of Survivorship Care Planning Summarize and communicate what transpired during cancer treatment Record known and potential late effects of cancer treatments with their expected time course Promote a healthy lifestyle to prevent recurrence and reduce the risk of other comorbid conditions Prevent fragmentation of care as well as improve the efficiency of care 1. A National Coalition for Cancer Survivorship. Implementing Cancer Survivorship Care Planning: Workshop Summary. Washington, DC: National Academies Press;

26 Survivorship Care Planning 1. Treatment Plan 2. Treatment Summary (Historical - Past) 3. Follow-up Care Plan (Present & Future)

27 Treatment Summary Template Diagnosis, tumor characteristics, staging Reports of test results Treatments, dosages, toxicities Dates of treatments, completion Supportive care Contact information, care coordinator Responsibility: Oncology Team

28 Survivorship Care Plan Ongoing! Surveillance Recurrence New cancers Lingering & Late effects of treatment Health maintenance/health promotion Lifestyle/behavioral interventions Coordinated non-cancer care Education, resources and support services Responsibility: Team effort Oncology, Primary Care, Survivor, Ancillary Caregivers

29 Care Plan Templates Journey Forward*** Livestrong care plan*** Memorial Sloan Kettering model

30 Rich Boyajian, NP LAF Adult survivor clinic

31 Some Issues for Oncology Providers (Larry Shulman, MD, Dana Farber) Rapidly increasing number of new patients Increasing complexity of care and more frequent visits per patient Increasing number of cancer survivors needing increasing amounts of care Less availability of care for cancer survivors from PCPs? Who will get needed care the acutely ill cancer patient requiring active treatment, or the relatively well cancer survivor who needs focused care?

32 Third-year Internal Medical Residents Choosing Careers as Generalists, Subspecialists, and Hospitalists N Engl J Med 355:9; August 31,

33 Issues for Primary Care Workforce Falling number of PCPs Increasing population needing care Aging population needing care It takes much longer to see an older patient productivity will drop Who will get seen the elderly patient with multiple acute and chronic medical problems, or the cancer survivor who is relatively well, but in need of focused survivorship care?

34 Helpful References Cancer Survivorship Today and Tomorrow. Cancer Rehabilitation: Principles & Practice. Patricia Ganz M. Stubblefield, Michael O Dell From Cancer Patient to Cancer Survivor: Lost in Transition Institute of Medicine Implementing Cancer Survivorship Care Planning Institute of Medicine

35 Challenges for Survivors How do I identify risks and problems? Who will assess cancer-related concerns? Will insurance cover screening, follow-up, diagnostic tests, care? How do I find a specialist who will take my concerns/symptoms seriously? What resources are available for LT survivors?

36 Survivor NEEDS include. Access to comprehensive follow-up clinics and specialists for adults as well as children More research in the area of lingering and late effects Systematic follow-up and inclusion in databases to identify risks

37 Needs continued.. Focus on wellness and improved quality of life Insurance coverage for rehabilitation, visits to specialists, mental health care, end of life care Shift from Surviving to THRIVING

38 Expanding Sense of FUTURE and Re-defining HOPE