Objectives. Important Organizations 2/21/2015

Transcription

1 Objectives Helene C. Geraci MN ARNP AOCNP Swedish Health Care Services Cancer Institute True Family Women s Cancer Center Know the criteria set by the COC for a survivorship program Learn components for a treatment summary and a survivorship care plan Identify possible barriers and how to deal with them Important Organizations A bit of History ONS (Oncology Nursing Society) 1975 IOM (Institute of Medicine) 1970 Nat Academy of Sciences 1863 COC (Commission on Cancer) 1920 part of ACOS ACOS (American College of Surgeons) 1913 NCI (National Cancer Institute) 1937 NIH, DHHS NCCN (National Comprehensive Cancer Network) 1995 NCCS (National Coalition for Cancer Survivorship) 1985 JCAHO (Joint Commission on Accreditation of Healthcare Organizations ) 1951 ASCO (American Society of Clinical Oncology) 1964 Livestrong

2 18 Million Cancer Survivors Projected in 2022 Definition of survivor NCI considers cancer survivorship to start at the time of diagnosis and continues for the balance of the person s life. IOM (Institute of Medicine) Delivering high-quality cancer care: Charting a new course for a system in crisis. Washington, DC: The National Academies Press. Estimated Numbers of US Cancer Survivors by Site ACS % 3% 3% 3% 4% 4% 7% 8% 9% Male Survivors Jan 1, % Prostate Colon & Rectum Melanoma Urinary bladder Non-Hodgkin Lymphoma Testis Kidney & Renal Lung & Bronchus Oral cavity & Pharynx Leukemia Estimated Numbers of US Cancer Survivors by Site ACS % 6% 3% 3% 3% 2% 4% 8% 8% Female Survivors-Jan 1, % Breast Uterine corpus Colon & rectum Melanoma Thyroid Non-Hodgkin lymphoma Uterine cervix Lung & Bronchus Ovary Urinary bladder 2

3 Survivorship Challenges Increasing expectations for good quality of life after cancer Increasing identification of life challenges Long term effects Effects that persist after completion of treatment Late effects Occur after treatment has been completed Medical Consequences of Treatment Potential wide range of long-term and late effects Risk depends on the tissue and age of patient at time of treatment Dose and modality specific (e.g., surgery, radiation, chemotherapy) Combined modality therapy can have additive risks Dimensions of Quality of Life Physical Well Being & Symptoms Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Organ Toxicity Social Well Being Family Distress Roles & Relationships Affection/Social Function Appearance Enjoyment Isolation Finances Work Cancer Survivorship Psychological Well Being Control Anxiety Depression Enjoyment/Leisure Fear of Recurrence Cognition/Attention Distress of Dx & Treatment Spiritual Well Being Meaning of Illness Religiosity Transcendence Hope Uncertainty Existential Meaning Medical Sequelae of Cancer and its Treatment Bone and soft tissue Integumentary Cardiovascular Musculoskeletal Dental/oral Nervous system Endocrine Neurocognitive Gastrointestinal Ophthalmologic Genitourinary Pulmonary Hematologic Renal Hepatic Reproductive Immune system 3

4 Survivors Needs Lance Armstrong Foundation LIVESTRONG Poll n=1020 Secondary Health Problems 53% - secondary health problems 54% - deal with chronic pain 33% - infertility Non-Medical Support 49% - non-medical cancer needs were unmet 53% - practical and emotional consequences of cancer are often harder than medical issues Emotional Support 70%- dealt with depression 78% - did not seek professional services Relationships 58%- dealt with loss of sexual desire and/or sexual function Survivors Needs Lance Armstrong Foundation LIVESTRONG Poll n=1020 Financial Problems 43% - decreased income as a result of cancer 25% - in debt as a result of treatment 12% - turned down a treatment option because of cost Job Issues 32% - lack of advancement, demotion or job loss 34% - trapped in job to preserve insurance coverage Prevention Tobacco control Diet Physical Activity Sun exposure Virus exposure Alcohol use Chemoprevention The Cancer Control Continuum Early Diagnosis Treatment Survivorship End-of-Life Detection Care Cancer Oncology Chemotherapy Long term Palliation screening consultations Surgery follow-up / Spiritual Awareness Tumor Radiation surveillance issues of cancer staging therapy Late-effects Hospice signs and Patient Symptom management symptoms counseling management Rehabilitation and decision Psychosocial Coping making care Health promotion Survivorship Care Usual Practice Follow-up by oncologists is routine Patients find it reassuring Duration of follow-up is variable Follow-up guidelines are limited and recent Follow-up care focused on surveillance for recurrence Limited transfer of knowledge and information to primary care provider Source: From Cancer Patient to Cancer Survivor: Lost in Transition; page 24, Box

5 National Direction for Cancer Survivorship Initiatives Institute of Medicine Report 11/05 Implement survivorship care plan Build bridges between oncology and primary care Develop and test models of care Develop national guidelines, institute quality assurance, strengthen professional education Make better use of psychosocial and community support services Address employment and insurance issues Invest in survivorship research Executive Summary From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, D.C.: The National Academies Press; COC accreditation committee made following changes January 1,2015 Implement a pilot survivorship careplan process involving 10% of eligible patients January 1,2016 Provide survivorship care plans to 25% of eligible patients January 1,2017 Provide survivorship care plans to 50% of eligible patients January 1,2018 Provide survivorship care plans to 75% of eligible patients January 1, 2019 Provide survivorship care plans to all eligible patients. Long Term Follow-up Programs Rationale A need to figure out how to care for the large number of individuals in follow-up Greater understanding of the consequences of cancer and its treatment Focus on the application of interventions to eliminate/reduce sequelae Follow-up care setting can be a platform for research Begin to focus on survivorship education and training 5

6 IOM Components of Survivorship Coordination between Patients, Care Prevention & Detection Oncologists, Primary Coordination Care Physicians and Other Communication mgmt. between Patients, Health Oncologists, Care PCP Providers and Other Health Care Professionals Treatment Survivorship Summaries Care Plans Treatment Summaries Survivorship Care Plans 1. Promote Healthy Behaviors Physical Activity Diet Tobacco Cessation Sun Protection 2. Screening Procedures Surveillance Assessment for recurrence Late effects Interventions for Consequences Of Cancer and/or Treatment Physical Psychological Social Spiritual Adapted from IOM Report (2006) & Aziz &Rowland (2003) Grant et al. (2010) Survivorship Care Models Pediatric Programs NP and oncologist/primary care physician Long term follow-up clinics Free standing Multidisciplinary Not disease specific Survivorship care models Oncology specialist care Multi-disciplinary care Disease Specific Clinic General Survivorship Clinic Consultative Care Clinic Integrated Care Clinic Community Generalist Shared Care Clinic Survivorship Care Models Community Setting Where most survivors receive care Few models tried to date academic adaptation is possible Shared-care deserves evaluation Used for chronic disease management A few studies suggest this is applicable to survivorship care 6

7 New and Expanded Services Opportunites. New and Expanded Services Opportunities Maximize use of current programs and services Support groups and psychoeducational programs Nutrition counseling Smoking cessation Physical rehabilitation Integrative Medicine Establish communication systems Patients Providers Consider new services Sexual health program Partner with existing community programs i.e. YMCA Communication. Treatment Summaries-Care Plans Coordination between specialists and primary care physicians to ensure that all of the survivor s health needs are met. How? Treatment summary Record of surgery, RT, and chemo, endocrine therapy Any events during treatment needing follow-up Expected long term and late effects.communication Survivorship Care Plans Care plan Oncology follow-up care Oncologist or PCP NP Nurse Practitioner Prevention practices/ Health promotion Legal protections Resources 7

8 References American Cancer Society. Cancer Treatment and Survivorship Facts & Figures Atlanta: American Cancer Society, 2012 No Ferrell, B. R., & Hassey Dow, K. (1997). Quality of life among long-term cancer survivors. Oncology (Williston Park), 11(4), , 571; discussion 572, Ganz, P. A. (Ed.). (2007). Cancer Survivorship Today and Tomorrow. New York: Springer. Grant, M., Economou, D., & Ferrell, B. R. (2010). Oncology nurse participation in survivorship care. Clin J Oncol Nurs, 14(6), doi: P7M [pii] /10.CJON Institute of Medicine [IOM]. (2006). From Cancer Patient to Cancer Survivor-Lost in Transition. In M. Hewitt, S. Greenfield & E. Stovall (Eds.), (pp ). Washington DC: The National Academies Press. Office of Cancer Survivorship (OCS). (November 6, 2006). Office of Cancer Survivorship-Key Initiatives, 2007, from Oeffinger, K. C., & McCabe, M. S. (2006). Models for delivering survivorship care. J Clin Oncol, 24(32), Rechis, R., Reynolds, K., Beckjord, E. B., Nutt, S., Burns, R. M., & Schaefer, J. (2011, May 2011). "I learned to live with it" is not good enough: Challenges reported by post-treatment cancer survivors in the LIVESTRONG surveys, from Rock, C. L., Doyle, C., Demark-Wahnefried, W., Meyerhardt, J., Courneya, K. S., Schwartz, A. L.,... Gansler, T. (2012). Nutrition and physical activity guidelines for cancer survivors. [CA: a cancer journal for clinicians]. CA Cancer J Clin. doi: /caac Acknowledgement Funded by NCI R25 CA Preparing Professional Nurses for Cancer Survivorship Care Marcia Grant RN, PhD Mary McCabe RN, MA Co PI s Project Director: Denice Economou, RN, MN. Know Your Population Patient groups Age specific emphasis Pediatric survivors Adult survivors of pediatric cancer Survivors of adult onset cancers Disease focus Breast cancer survivors Treatment focus BMT survivors Family members Direct services Information 8

9 Assemble the Tools Institutional assessment Organizational inventory Leadership Clinical resources Financial Collaborations Strengths Assess institutional services and expertise with resources and professional respect Repurpose these services to have a survivorship focus Weaknesses Consider the necessity of the services Determine how to address weaknesses in areas of importance Assemble the Tools Needs assessment What do survivors want Non-medical issues often unaddressed What do survivors need Late effects often unknown Opportunities and Challenges Clinical services Medical Psychosocial Education Research Establishing Clinical Services Costs (performed by administration) Space Assess what is already there Take any that is offered Time Determined by the overall plans Clinical services need to be efficient Personnel New and/or current staff Novel provider models Making pilots a reality Establishing Clinical Services Have a Definite Focus Programmatic Thinking Refocus existing programs Expand existing programs Add programs Supportive care Follow-up services Integrate community resources into institutional plans Practical planning Don t need to own it to use it 9

10 Pilots Provide Opportunity Begin where you can begin as proof of principle Prospectively plan an evaluation Revise as needed Adaptive design model Network and learn from others Be willing to shut things down Be willing to make mistakes Services Needed by Survivors Cardiology Dental Dermatology Endocrinology Fertility Genetic Counseling Immunizations Incontinence Specialist Integrative Medicine Nutrition Ophthalmology Physical & Occupational Rehabilitation Plastic Surgery Psychiatry Pulmonology Renal Sexual Health Smoking Cessation Neurology What does an initial visit consist of? 1. Evaluate stress level 2. Perform a needs assessment/provide referrals 3. Provide a Treatment Summary 4. Discuss Late Term side effects 5. Physical exam as needed 6. Provide a Plan of Care 7. Whatever else is necessary NCCN baseline assessment Anxiety and Depression Cognitive Function Exercise Fatigue Immunizations and Infections Pain Sexual Function Sleep Disorder Financial concerns Genetic testing Spiritual/faith altered 10

11 Electronic Medical Records ASCO templates Treatment Summary template for each cancer Plan of Care template for each cancer Initial Visit Follow up visits Additional documentation Barriers One more visit Electronic medical records Adequate support/lack of referrals Lack of knowledge Location/parking Inadequate resources In summary Starting a survivorship Clinic 1.) Have a physician advocate/ individual with experience in program development 2.) Steering committee 3.) Take a course on starting a clinic (City of Hope) 4.) Preview other care plans ie: Journey Forward, Livestrong, ASCO Review Guidelines IOM (Institute of Medicine),American College of Surgeons.. COC (Commission on Cancer), NCCN(National Cancer Care Network), NCI (National Cancer Institute ) ASCO American Society of Clinical Oncology. Pilot a Population Breast cancer Initial Visit/Documentation 1.)Patient assessment/needs assessment/late term side effects 2.)Treatment Summary 3.)Plan of Care 4.)Follow up Visits 5.)EMR Referrals Barriers/Impediments 11