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Challenges in Implementation of Survivorship Care Plans Patricia A. Ganz, M.D. Jonsson Comprehensive Cancer Center UCLA Schools of Medicine & Public Health Who are the Cancer Survivors? • More than 1 in 3 Americans will be diagnosed with cancer in their lifetime • More than 14 million Americans have a personal history of cancer; >4% of US population • The number of cancer survivors will increase sharply during the next 25 yrs with aging of the population Estimated and projected number of cancer survivors in the United States from 1977 to 2022 by years since diagnosis. de Moor J S et al. Cancer Epidemiol Biomarkers Prev ©2013 by American Association for Cancer Research 2013;22:561-570 Estimated number of cancer survivors in the United States as of January 1, 2012 by cancer site. de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:561-570 ©2013 by American Association for Cancer Research Esimated number of cancer survivors in the United States as of January 1, 2012 by time since diagnosis and sex. de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:561-570 ©2013 by American Association for Cancer Research Estimated number of cancer survivors in the United States as of January 1, 2012 by cancer site and years from diagnosis. ©2013 by American Association for Cancer Research de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:561-570 • Comparison of cancer survivors and agematched individuals from the National Health Interview Survey (NHIS) in 2000 • Multiple measures of burden embedded within the survey JNCI 96:1322, 2004 Health Status is Significantly Poorer in Cancer Survivors Cancer Survivors (N=1817) Excellent Excellent Very Good Good Very Good Good Fair Fair Poor Poor 31% Fair & Poor Yabroff, JNCI 2004 Noncancer Controls (N=5465) 18% Fair & Poor P <.001 Number of Comorbid Conditions Burden of Illness is Greater 60 50 40 % Ca Surv Noncancer 30 20 10 P<.001 0 0 Yabroff et al. JNCI 2004 1 2 >= 3 Cancer Survivors Need More Help with Activities of Daily Living (ADLs) Needs help with instrumental ADLs Cancer survivors N=1817 Noncancer controls N=5465 11.4% 6.5% P <.001 Any limitation in any way 36.2% Needs help with ADLs 4.9% 23.8% P <.001 3.0% P=.003 Yabroff et al. JNCI 2004 Comorbid Conditions Causing Limitation in Cancer Survivors Condition causing limitation, % CA Survivor Control P-value Arthritis/rheumatism 21.9 18.4 .005 Back/neck problem 12.0 9.5 .01 Fracture/bone/joint injury 7.0 5.3 .03 Heart problem 5.8 4.8 .17 Stroke 2.1 1.8 .50 Hypertension 3.6 2.6 .02 Diabetes 2.6 2.3 .57 Lung/breath problem 4.8 3.6 .03 Depression/anxiety/emotional problem 2.5 1.9 .21 Weight problem 1.9 1.5 .34 Musculoskeletal problem 4.3 3.5 .18 Yabroff et al. JNCI 2004 Conclusions • Most cancer survivors are older, and living with more comorbid conditions and limitations • A cancer history will only be one reason they will be visiting a health professional • They are at risk for fragmentation of care--that is the perfect setting for care plans! Role of treatment summaries and care plans in health care • Hospital discharge summary – Required by accrediting bodies – Communicates with the outpatient physician – Often summarizes lengthy and complex hospitalizations • Discharge planning for patients – Lets them know what procedures are planned, medications to take, follow-up appointments – Provided in a written format with copies in the chart as a summary document Why is this done? • Hospitalizations are long and complicated • Patients may have been too ill to remember what went on and may still be sick at the time of discharge • Family members and the outpatient medical team need to know what happened and what follow-up is planned • No randomized trials were done to test this; it makes common sense! Why is cancer different from other chronic diseases? • Cancer treatment is…. – Complex, lasting months to years – Multi-modal – Multi-disciplinary – Toxic – Expensive – And often poorly coordinated; primarily in the outpatient setting; separate MD offices • Cancer treatment usually occurs in isolation from primary health care delivery Why does cancer care present such a challenge? • An average of 3 specialists/patient, with treatments across time and space…outpatient, inpatient, specialized treatment facilities…. limited communication among treating physicians, multiple medical records Other Challenges • Limited systematic study of the late effects of cancer therapy • Follow-up care plans have been ad hoc, with focus on surveillance for recurrence • When should health promotion and chronic disease prevention become the focus? • Infertility? “Dear, you should just be happy to be alive.” 2005 IOM Findings: Survivorship Care • Survivorship care is a neglected phase of the cancer care trajectory • Cancer recurrence, second cancers, and treatment late effects concern survivors • Few guidelines on followup care • Providers lack education and training 2005 IOM Findings: Survivorship Care • Survivors may: – be unaware of risk – have no plan for followup • Opportunities to intervene may be missed • Cancer care is often not coordinated • Models of survivorship care not tested 2005 IOM Findings: Quality Survivorship Care • Chronic care model applies • Essential care components – Prevention – Surveillance – Intervention – Coordination Where does the Survivorship Care Plan fit in the Chronic Care Model? Survivorship Care Plan Epping-Jordan, J E et al. Qual Saf Health Care 2004;13:299-305 Copyright ©2004 BMJ Publishing Group Ltd. JOP, 2012 • US Survey of nationally representative medical oncologists (n=1130) and PCPs (n=1020) regarding follow-up care of breast and colon cancer survivors • Provision and receipt of treatment summaries (TS) and survivorship care plans (SCP) was queried from each group • PCPs receipt of SCPs was associated with better PCP-reported care coordination, physician-physician communication, and confidence in survivorship care knowledge (p<.05) Forsythe et al. JNCI 2013 Tools and Resources • ASCO Survivorship Templates and Resource Center • Journey Forward • LIVESTRONG Survivorship Care Plan http://www.asco.org/practi ce-research/challengesimplementingsurvivorship-program http://www.asco.org/practic e-research/survivorshipcare-clinical-tools-andresources Patient resources on www.cancer.net Colon Cancer Adjuvant Therapy Treatment Plan & Summary The Treatment Plan and Summary provide a brief record of major aspects of colon cancer adjuvant chemotherapy. This is not a complete patient history or comprehensive record of intended therapies. Provider name: Patient name: Patient ID: Age at diagnosis: Patient DOB: (___/___/___) Patient phone: Support contact name: Support contact relationship: Support contact phone: Background Information Cancer detection: Site in colon: □ Screening □ Right □ Transverse Predisposing conditions: □ None Family history: □ Symptoms □ None □ Left □ Sigmoid □ Inflammatory bowel disease □ 2nd degree relative Pre-op colonoscopy to cecum: □ Incidental □Yes □ No □ FAP □ 1st degree relative □ HNPCC □ Multiple relatives Other lesions: polyps Primary colon operation: Surgery type: □ Elective □Emergent Stage: □ IIA □ IIB □ IIIA □ IIIB □ IIIC Number of lymph nodes removed: Notable pathology findings: □ None □ Low risk polyps Date of surgery: (___/___/___) CEA preop: CEA post-op: T stage: □ T1 □ T2 □ T3 □ T4 N stage: □ N0 □ N1 Number of lymph nodes positive: □ N2 □ High risk White sections to be completed prior to chemotherapy administration, shaded sections following chemotherapy Height: in/cm Pre-treatment weight: lb/kg Post-treatment weight: lb/kg Pre-treatment BSA: Name of regimen: Treatment on clinical trial: □ Yes Start Date: □ No (___/___/____) Bio/Chemotherapy Drug Name Possible side effects of this regimen: □ Hair loss □ Neuropathy □ Low blood count □ Fatigue □ Diarrhea □ Dehydration □ Nausea/Vomiting □ Other: End Date: Rou te Dose Schedule (___/___/____) Dose reduction needed □ Yes_____% □ No □ Yes_____% □ No □ Yes_____% □ No □ Yes_____% □ No Number of cycles administered Number of cycles containing oxaliplatin: Serious toxicities during treatment (list all): Hospitalization for toxicity during treatment: □ Yes □ No Reason for stopping adjuvant treatment: Disease status at end of treatment: □ No evidence of disease □ Possible recurrence □ Recurrence Leading Survivorship Care Planning www.journeyforward.com About Journey Forward “Journey Forward reflects the best of cross-industry collaboration that can fulfill the vision of survivorship documented in the IOM report, ‘Lost in Transition.’”—Survivor & advocate Journey Forward is the result of a 7-year, cross-industry collaboration between: • • • • • Survivors: National Coalition for Cancer Survivorship Oncologists & researchers: UCLA Survivorship Center Nurses: Oncology Nursing Society (ONS) Pharmaceutical industry: Genentech Insurance industry: WellPoint Journey Forward provides a free innovative and evolving suite of tools to ensure patients get a Survivorship Care Plan. Survivorship Care Planning “What a thoughtful tool to support cancer survivorship care! It is a must-have for patients to use with their health care providers.” –Public health professional Journey Forward Care Plans: Summarize the patient’s diagnosis and treatment Provide a schedule for follow-up care Identify the provider to contact for individual tests and follow-up Identify patient’s needs, concerns and ongoing symptoms Provide tailored information on managing the patient’s symptoms Educate patients and professionals on what to expect Provide information on surveillance and what to watch for Utilizes ASCO’s chemotherapy treatment summary templates Incorporate ASCO surveillance guidelines Support all cancer types Can be fully customized by users Survivorship Care Plan Builder • For oncology professionals • Easy-to-use: Use cancer-specific care plan templates/forms. • Fully customizable: Add your logo. Build your own templates. Edit your regimen and document libraries. • Secure: Store your data securely behind your firewall—not on the web or a 3rd party server. • Sharing & collaboration: Work with others on care plans. Share your customizations. • Data integration: Import patient data from your cancer registry. New My Care Plan • A helpful tool for survivors • Empowers survivors to initiate their own Care Plan • Can be completed by the patient with the help of his or her oncology provider • Can be printed and/or emailed to primary care provider and others on care team Available as a mobile app Available as writable/printable PDF form Enhanced Survivorship Library • For patients and professionals • Includes important factsheets: – – – – What to expect Symptoms to watch for Surveillance guidelines Symptom management • Available on all devices Survivorship Tool Suite My Care Plan Survivorship Library Survivorship Care Plan Builder http://www.livestrongcareplan.org/ Cancer Care Trajectory Cancer-Free Survival Recurrence/ Second Cancer Start Here Managed Chronic or Intermittent Disease Treatment With Intent to Cure Diagnosis and Staging Treatment Failure Survivorship Research & Survivorship Care Palliative Treatment Death IOM, 2005 Definitions • Long-term effect: a symptom or problem that begins during cancer treatment and persists when treatment ends e.g., fatigue, cognitive complaints, pain • Late effect: a symptom or problem that occurs months to years after treatment ends, e.g. a second cancer, congestive heart failure, lymphedema • Some symptoms or problems can either be long-term or late effects---confusing! Survivorship Health Care Delivery • The Three P’s of Survivor Care – Palliation – Prevention – Health Promotion Ganz, P A. (2011). The 'three Ps' of cancer survivorship care. BMC medicine, 9, 14-14. Symptom Management/Palliative Care: An Integral Part of Survivorship Care • Definition of Palliative Care: – Medical care or treatment that concentrates on reducing the severity of disease symptoms (particularly if there is not a curative medical treatment) – Goal is to prevent and relieve suffering and to improve QOL for people facing complex illness • Focus on the most severe and prolonged symptoms Cancer Care Continuum Incorporation of palliative care across the care continuum Common Palliative Care Concerns • • • • • • • • • • Pain Fatigue Depression Insomnia Physical limitations Cognitive changes Lymphedema Sexual dysfunction Menopause related symptoms Body Image Consultant Specialists Required • • • • • • • • Mental health Pain management Physical medicine/vocational rehab Endocrinology Cardiology Gynecology/fertility Pulmonary Neurology/neuropsychology Prevention • Systematic ongoing follow-up required for screening – Goal: early detection and early intervention for potentially serious late-onset complications e.g., cataracts, osteoporosis, cardiac disease – Chemoprevention when available – Genetic counseling for hereditary cancers • Life style modification to prevent second cancers Health Promotion • Health promotion counseling – Goal: promote risk reduction for health problems that commonly present during adulthood ( esp. for childhood cancer survivors) – Avoid weight gain – Increase physical activity – Avoidance of exposures that are harmful – Decrease risk of other chronic diseases, e.g. diabetes, heart disease How to deliver the 3 P’s? • New research is needed on models of care delivery • One size will not fit all; different settings and different patients will have different requirements • What is right for at UCLA may not be right in other settings • Survivorship care plans can educate patients about how they can enhance their recovery Target Populations • Incident versus prevalent cases • Special issues related to childhood cancer survivors • Need to determine who you are serving and how you will provide services What is needed to implement survivorship care planning? • Acceptance of cancer as a chronic disease— following an initial period of extraordinarily complex therapy! • Staff support for time required to prepare and communicate the plan • Expand the evidence-base of knowledge re: late effects, follow-up needs and survivorship care • Train all health professionals in the needs of the growing number of cancer survivors—how to act on the care plan recommendations Cancer Care Trajectory Cancer-Free Survival Recurrence/ Second Cancer Start Here Medical Outcomes and Quality of Life Treatment With Intent to Cure Diagnosis and Staging Safer therapies Risk assessment and intervention at diagnosis Survivor health care delivery: Palliation, Prevention and Health Promotion