The Demands of Cancer Survivorship

Transcription

1 The Demands of Cancer Survivorship Jennifer Klemp, PhD, MPH Associate Professor Director, Cancer Survivorship University of Kansas Cancer Center CEO/Founder, Cancer Survivorship Training October 2014

2 Overview This course will healthcare providers: Demands of Cancer Survivorship Who, What, When, Where, Why, How Recognize the majority of cancer survivors experience longterm and late effects of their treatment Understand how Survivorship Care can promote and contribute to long-term health and integration into the EHR Delivering Multidisciplinary Survivorship Care: What does it look like? Common Concerns & Research Targets 2

3 Who is a Cancer Survivor? A cancer survivor is anyone who has been diagnosed with cancer from the time of diagnosis and for the balance of his or her life. NCCN: National Coalition for Cancer Survivorship 3

4 Estimated and projected number of cancer survivors in the United States from 1977 to 2022 by years since diagnosis by American Association for Cancer Research de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:

5 Cancer Control Continuum Prevention Diet/Exercise Sun Exposure Alcohol Tobacco Control Chemoprevention Early Detection Cancer screening Pap test Mammogram PSA/DRE Fecal occult blood test Colonoscopy Awareness of cancer risk, signs, symptoms Modified Phases of Cancer Care Diagnosis Oncology/ surgery consultation Tumor staging Patient counseling & decision making Clinical trials Informed Decision Making Treatment Chemo/Immuno Therapy Surgery Radiation Symptom management Psychosocial Maintenance therapy Survivorship Long-term follow-up/ surveillance Manage lateeffects Rehabilitation Coping Health promotion Prevention Palliative Care Delivery of Survivorship Care End of Life Implement advanced care planning Support patient & family Hospice Informed decision making Patient and Caregiver Support Services Onco-Rehab Care planning Prevention & Management of Late and Long-term Effects Palliative Care Adapted from: Accessed July 25, 2011.

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7 Age of Cancer Survivors Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Current Age* *(Invasive/1st Primary Cases Only, N=11.4M survivors)

8 Estimated Number of Cancer Survivors in the U.S. based on November 2009 SEER data by Site *(Invasive/1st Primary Cases Only, N=11.4M survivors)

9 Delivery of Survivorship Care Survivorship care is by nature multidisciplinary and ideally provided using a team approach Specialty/Pri mary Care Mental Health Pain Management Physical Therapy/ Occupational Therapy Pulmonary Neurology/ Neuropsychology Gynecology/Urology Sexual Health/Fertility Endocrinology Cardiology IOM,

10 Survivorship Care is a Dynamic Process Physical/Medical Psychosocial Social/Well Being Existential/Spiritual A multidisciplinary approach to survivorship care considers a providers expertise and aims to meet each survivors unique physical, social, psychosocial and spiritual needs

11 Management of the Physical Consequences of Cancer Treatment Long-term Side Effects Chemotherapy Fatigue, endocrine symptoms, infertility, neuropathy, cognitive function, heart, kidney, and liver problems Surgery Scars, chronic pain Immunotherapy Rash/Dermatologic issues, endocrine/hypo-pituitary, GI (diarrhea, inflammatory bowel) Radiation Therapy Fatigue, skin sensitivity Late Side Effects Chemotherapy 2 nd primary cancers, cataracts, infertility, liver problems, lung disease, osteoporosis/endocrine issues, cognitive function, weight gain Surgery Lymphedema, scar tissue Radiation Therapy Cataracts, heart, lung, intestinal and thyroid problems, second primary cancers, memory problems, cavities and tooth decay 11

12 Management of the Psychosocial Effects of Cancer Treatment Psychological Depression, anxiety (fear of recurrence), uncertainty, isolation, altered body image Social Changes in interpersonal relationships, concerns regarding health or life insurance, job loss, return to school, financial burden Existential and spiritual issues Sense of purpose or meaning, appreciation of life 12

13 SUPPORTIVE SERVICES NEEDS ASSESSMENT Patient Information: Treating the whole person and not just the disease helps our patients recover faster. We want to assist you throughout your cancer experience. Help us identify how to best support you. Please complete the 3 steps below. STEP 1 How distressed are you feeling today? Circle below to show your level of distress, 10 being the highest, 0 being the lowest: Please mark YES if any of the following are concerns you have had in the PAST MONTH: STEP 2 STEP 3 Would you like to meet with a supportive service professional? Please mark all that apply to you. NO YES Practical concerns Social worker I am interested in preparing an advance directive/living will. Psychologist I am interested in travel or lodging information. Dietitian I want to discuss social security or work issues. Chaplain NO YES Emotional concerns Wellness provider I am feeling anxious, worried or irritable. Financial counselor I am feeling sad and crying more. I am concerned about my relationship with people close to me. Would you like information about NO YES Nutrition concerns I have lost at least 5 pounds without trying. I am eating less than I used to eat. other services? Please mark all that apply to you. Support group (disease, peers) I have a physical problem or pain that keeps me from eating. Wellness group (coping, yoga, etc.) NO YES Spiritual concerns Educational opportunities I have religious beliefs that impact my treatment. I have spiritual worries or concerns related to my illness. OFFICE USE ONLY I consider prayer/meditation/worship as important to my treatment. NO YES Physical concerns I have a problem with pain and/or fatigue. Physician Signature I have a physical symptom that is new for me. I have a physical symptom that is getting worse. Nursing Signature We want to hear your feedback. Please note any other concerns you may have: Supportive Service Signature 13

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15 Survivorship Care Across the Continuum of Care Modified Cancer Care Trajectory Delivery of survivorship education & preventive strategies Start Here Diagnosis and staging Treatment with intent to cure Cancer-free survival Managed chronic or intermittent disease Treatment failure Recurrence/ second cancer Delivery of post-treatment survivorship care Palliative treatment Delivery of survivorship care in the advanced cancer setting Death Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at Accessed July 25,

16 Where Do Cancer Survivorship Receive their Care? Multidisciplinary physician, nurse practitioner, psychologist, social worker Disease-specific Breast, prostate Consultative service One-time comprehensive visit Treatment Summary and Care Plan Integrated Care Model Usually a NP works within the team Ongoing care Shared Care Model Collaboration with primary care 16

17 Elements of Shared Care Delivery Care shared by two or more clinicians of different specialties (ie. Oncology and Primary Care) Who does what: understanding of roles and responsible of care Knowledge transfer Treatment summary and care plan Specific information on disease General information about late & long-term effects Communication channels Contact information for oncology physicians and nurses Active patient involvement Encouraged to contact primary care physician with problems Provided with the information given to the primary care physician Renders et al: Diabet Med 20: , 2003; Jones et al: Am J Kidney Dis 47: , 2006 Neilsen et al: Qual Saf Health Care 12(4)

18 Survivorship Care is Recommended by National Experts The Institute of Medicine report on cancer survivorship states: Survivorship care is a neglected phase of the cancer care trajectory Cancer recurrence, second cancers, and treatment late effects concern survivors Few guidelines are available for follow-up care Providers lack education and training 18

19 Addressing Barriers to Quality Care Fragmented, poorly coordinated care Absence of locus of control or central responsibility for follow-up care Poor communication Among clinicians Between clinicians and patients Lack of guidance on medical & psychological tests, exams, follow-up Provider education Cancer Care Team Primary Care Expanding role Midlevel providers Nurses Inadequate reimbursement: prevention & survivorship are expensive Limited experience on the best way to deliver quality care Models of providing care are currently being evaluated & include: Shared-care model: services provided by specialty & primary care clinicians Clinician led model (MD, PhD, NP, PA) Specialized multidisciplinary survivorship clinic Will depend on resources available and clinical expertise 19

20 Practice Guidelines NCCN Survivorship Version Anxiety and Depression Cognitive Function Exercise Immunizations and Infections Fatigue Pain Sexual Function Sleep Disorders These guidelines are designed to provide a framework for general survivorship care and management and are not intended to provide specific guidelines on the surveillance and follow-up requirement for a survivor s primary care. Accessed April 15,

21 Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis IOM, 2013 Trends Amplifying the Crisis The aging population: 30% in cancer survivors by % in cancer incidence by 2030 Workforce shortages Rising cost of cancer care: $72 billion in 2004 and now $125 billion in 2010 $173 billion anticipated by 2020 (39% ) Complexity of cancer care Reliance on family caregivers and direct care workers Limitations in the tools for improving quality 21

22 Quality Improvement National Standards to address: Practice Improvement Demonstrate Quality Improve Efficiency and Effectiveness Increase public trust Competitive Edge 22

23 American Society of Clinical Oncology Patient emotional well being assessed by 2 nd visit Infertility End of Life Survivorship Quality Indicators: Treatment summary process complete Chemotherapy treatment summary provided to and communicated with patient and practitioner(s) within 3 months of chemotherapy end.

24 COC Standards Impacting the Delivery of Survivorship Care Standard 1.8: Monitoring Community Outreach Standard 1.10: Clinical Education Activity Standard 3.1: Patient Navigation Process Community needs assessment Standard 3.2: Psychosocial Distress Screening Referrals in place Standard 3.3: Survivorship Care Plan (SCP) The SCP is prepared by the principal providers and given to each cancer patient upon completion of treatment and contains a record of care received, important disease characteristics, and a written follow-up care plan incorporating available and recognized evidence-based standards. 24

25 Survivorship Chronic Care Model Community Resources & Policies Non-profits, advocacy groups Wellness communities Government agencies Self Management & Decision Support Health System Clinical Information Systems EHR, Care Plan Delivery System Design Cancer Survivorship Care Informed Activated Patient Productive Interactions Prepared Proactive Providers Functional & Clinical Outcomes Adapted from: Accessed July 25,

26 Patient Centered Survivorship Care Community Resources/A dvocates Self- Management Health Care Team Survivor Survivors who partner their care between self-management, community resources and their health care team are often empowered to approach their care in a proactive manner.

27 Elements of Cancer Survivorship Post-Treatment Care Prevention: of new cancers & other late effects of treatment; compliance with long-term therapy Surveillance: for cancer recurrence or 2 nd cancers; evaluate new symptoms screen for complications from cancer diagnosis & Tx Intervention: for consequences of cancer Rx manage complications from cancer diagnosis & Tx Coordination: between specialists & primary care providers to ensure health needs are met Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at Accessed July 25, 2011.

28 Components of a Survivorship Care Plan Description of diagnosis Summary of treatment Therapies Contact information for each key provider MAJOR complications experienced Individual risk for late effects, second cancers Risk assessment and management strategies: Give orally & in writing Cancer risk Genetic Counseling for appropriate patients. Long-term monitoring for late effects Ongoing To Do List: Lifestyle strategies, adherence to oral therapies, etc Jacobs, L. Developing Models of Care for Adult Cancer Survivors.2006.

29 EPIC Treatment Summary and Survivorship Care Plan Template Highlights: EPIC 2012 (enhanced workflow with fields will auto-fill MUST use the problems list Data can be manually entered or smart text Functionality lost for version 2010 users is limited to discrete data points Meaningful use: Printed and/or Included in MyChart Templates in prodution: General (customizable) Breast GI GU Lung Adult Survivors of Childhood Cancers

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32 Barriers to Post-Treatment Survivorship Care Planning How to implement a survivorship care plan? Templates available Time consuming No/lack of reimbursement Not easily configured with medical records What will we do with the plan? Will it really be used??? JCO Dec, 2011: did not improve patient reported outcomes JOP Jan, 2012: not ready for prime time Unrealistic demands on limited staff Grunfield et al., Evaluating Survivorship Care Plans: Results of a Randomized, Clinical Trial of Patients With Breast Cancer, JCO Dec

33 Barriers to the Delivery of Post- Treatment Survivorship Care Limited experience on the best way to deliver quality care Models of providing care are currently being evaluated Will depend on resources available and clinical expertise PCP s are not prepared Oncologist want to maintain control & do not communicate Survivors are in limbo- who does what? Need ongoing professional education to bridge the gap between oncology, specialty and primary care McCabe, JCO: 2013 Grunfeld, JCO; 2006, 2011 Cheung, JCO; 2009, 2010 Del Giudice, JCO; 2009 Nekhlyudov, JCO;

34 Opportunities for Continuing Education: Survivorship Care Training Web/Mobile Training Program Cancer Survivorship Training for Healthcare Professionals CE and content matter expert developed curriculum

35 The KUMC/KUCC Model for Delivering Survivorship Care 35

36 Access to Services Shortly After Diagnosis Fertility Preservation Consult Cancer Genetics Consult Survivorship Care Nutrition Consult Exercise Evaluation Clinical Trials Quality of Life 36

37 Examples of Post-Treatment Care Diet and Exercise Interventions Clinical Trials Survivorship Care Cancer Rehab Quality of Life Cardio- Oncology 37

38 Academic Medical Center & Hospital 5 Community Locations Midwest Cancer Alliance- Survivorship Clinic in Hays, KS A Modern Family

39 Example: Prevention At Both Ends of the Cancer Continuum Breast Cancer Prevention Center Prevention Diet/Exercise Sun Exposure Alcohol Tobacco Control Chemoprevention Continuum Early Detection Cancer screening Pap test Mammogram Fecal occult blood test Colonoscopy Prostatespecific antigen/digital rectal exam Awareness of cancer risk, signs, symptoms Informed decision making Breast Imaging & Treatment Diagnosis Oncology/ surgery consultation Tumor staging Patient counseling & decision making Clinical trials Treatment Chemotherapy Surgery Radiation Adapted from: Accessed July 25, Symptom management Psychosocial care Survivorship Long-term follow-up/ surveillance Manage lateeffects Rehabilitation Coping Health promotion Prevention 39

40 Access to Empirically Driven Services & Clinical Research Follow-up clinic for survivors Monitor risk of breast & related cancers Reproductive health (fertility) & sexuality Cardiac risk & evaluation (Cardio-oncology) Endocrine/menopausal symptoms Psychosocial/cognitive function Genetic counseling and testing Weight management: diet & exercise Cancer Rehab/PT 40

41 What Trends Do We See in First 262 Patients in BrCa Survivorship Clinic? Median age = 58 (34-86) 88% = Stage 1 & 2 BrCa 70% were ER+ 49% were premenopausal at diagnosis Only 4% are premenopausal at entry into the Survivorship clinic Average Weight Gain: 5 pounds Baseline BMI at diagnosis: BMI at time of 1 st Survivorship Visit: Median # of minutes of exercise/week = Klemp JR, Smith AK, Ranallo L, Godbey D, Khan QK, Fabian CJ. Baseline characteristics of women initiating follow-up care in a newly developed breast cancer survivorship center. Cancer Res. 69, 2009.

42 KUMC Breast Cancer Survivorship Center n=262 Menopausal Symptoms: 58% Hot Flashes 56% Vaginal Dryness 46% NOT sexually active 92% had undergone a bone density analysis; 50% of these women had low bone density and were on a bisphosphonate A sizable proportion are not getting regular women s health screening tests from PCPs. Quality of life continues to be negatively impacted. Patients report an interest in Energy Balance, Menopausal Symptom Management, and concern over Heart and Bone Health

43 2014 Breast Cancer Survivorship Registry Data n= had another malignancy prior to BrCa 10 new primary post BrCa 138 prior BRCA1/2 testing (8% positive) 34 referred from survivorship (3% positive) Colonoscopy 128 none at baseline 43 referred and 33 completed = 77% Klemp, et al. Breast cancer survivorship care: A continuity of care model of delivery. ASCO Breast

44 Menopausal Symptoms Vaginal Dryness = 211 Interventions upon follow-up 116 no intervention 88 low absorption hormone therapy (estriol, estring, Vagifem, etc ) 8 OTC Hot Flashes =164 Interventions upon follow-up 109 no intervention 30 Neurontin 7 Bellamine 19 SSRI 8 Other 44

45 Bone Health Bone Mineral Density at baseline 183 had baseline BMD + osteopenia or osteoporosis 92 were on an oral bisphosphonate Referred for BMD 77 referred and went (100%) 14 with osteopenia 1 osteoporosis 4 initiated oral bisphosphonate 45

46 Examples of Survivorship Research and Quality Measures Delivery of Care Health care professional knowledge/access to survivorship care Rural vs Urban access to care Transition of Care- AYA, Adult survivors of childhood cancers Chronic disease management (including metastatic disease) Long-term Risk Factors Heart and Bone Health Lymphedema Late/Long Term Effects Diet & Exercise Weight gain Nutritional Support De-conditioned/lack of exercise Adherence Long-Term Therapy Quality of Life Sexual Health Focus Groups Side Effects Cost/Comparative effectiveness Cognitive Impairment Distress/Depression Fatigue Menopausal symptoms Loss of fertility Loss of intimacy ROI: Quality Improvement, meeting national standards, improved care coordination and reimbursement. 46

47 Examples of Common Concerns & Survivorship Research Targets Long-term impact of cancer and its treatment CVD risk Diet and exercise Weight gain Loss of lean muscle Adherence with long-term therapy Side effects (High Dose Vitamin D) Cost Quality of life Cognitive dysfunction Fatigue Distress Depression Sexual health 47

48 Ultimate Goal

49 Being cancer-free is not the same as being free of cancer Julia Rowland, PhD Director, NCI Office of Cancer Survivorship 49

50 Resources IOM: Lost in Transition report from 2005 IOM: Implementing the Survivorship Care Planning, Workshop Report, 2006 JCO Special Review Issue: Cancer Survivorship, November 10, 2006 M. Feuerstein (ed.) Handbook of Cancer Survivorship, Springer, 2007 Journal of Cancer Survivorship: New in 2007 P.Ganz (ed.) Cancer Survivorship: Today and Tomorrow, Springer,