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Creating and Implementing a Survivorship Program in Your Practice

Creating and Implementing a Survivorship Program in Your Practice. Jennifer Klemp, PhD, MPH Assistant Professor Director , Cancer Survivorship University of Kansas Cancer Center March 2013. Disclosure. Overview. This course will healthcare providers: Demands of Cancer Survivorship

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Creating and Implementing a Survivorship Program in Your Practice

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  1. Creating and Implementing a Survivorship Program in Your Practice Jennifer Klemp, PhD, MPHAssistant ProfessorDirector, Cancer SurvivorshipUniversity of Kansas Cancer CenterMarch 2013

  2. Disclosure

  3. Overview This course will healthcare providers: • Demands of Cancer Survivorship • Who, What, When, Where, Why, How • Recognize the majority of cancer survivors experience long-term 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

  4. “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 http://www.canceradvocacy.org/

  5. Cancer Control Continuum • Diagnosis • Oncology/ surgery consultation • Tumor staging • Patient counseling & decision making • Clinical trials • Informed Decision Making • Survivorship • Long-term follow-up/ surveillance • Manage late-effects • Rehabilitation • Coping • Health promotion • Prevention • Palliative Care • Early Detection • Cancer screening • Pap test • Mammogram • PSA/DRE • Fecal occult blood test • Colonoscopy • Awareness of • cancer risk, signs, symptoms • Treatment • Chemotherapy • Surgery • Radiation • Symptom management • Psychosocial • Maintenance therapy • Prevention • Diet/Exercise • Sun Exposure • Alcohol • Tobacco Control • Chemo-prevention • End of • Life • Support patient & family • Hospice • Informed decision making Phases of Cancer Care Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.

  6. “Who”: Growing Number of Cancer Survivors? Estimated 18 million by 2020 http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html#survivor; http://www.nih.gov/news/health/jan2011/nci-12.htm. Accessed July 25, 2011.

  7. “Who”: 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. “Who”: 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. “Who” Delivers Survivorship CareSurvivorship care is by nature multidisciplinary and ideally provided using a team approach Mental Health Specialty/Primary Care Physical Therapy/Occupational Therapy Pain Management Neurology/ Neuropsychology Pulmonary Endocrinology Gynecology/Urology Sexual Healht/Fertility Cardiology IOM, 2006

  10. “What”: 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. “What”: Manage 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 Radiation Therapy Fatigue, skin sensitivity Chemotherapy 2nd 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 Late Side Effects

  12. “What”: Manage the Psychosocial Late and Long-Term 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

  13. “When”: Across the Continuum of Care- Modified Cancer Care Trajectory Cancer-free survival Delivery of survivorship education & preventive strategies Recurrence/ second cancer Managed chronic or intermittent disease Treatment with intent to cure Start Here Delivery of post-treatment survivorship care Diagnosis and staging Treatment failure Delivery of survivorship care in the advanced cancer setting Palliative treatment Death Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011. 13

  14. “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

  15. “Where”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 20:846-852, 2003; Jones et al: Am J Kidney Dis 47: 103-114, 2006 Neilsen et al: Qual Saf Health Care 12(4) 263-272.

  16. “Why”: 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

  17. “Why”: Current Delivery is Fragmented, Poorly Coordinated • Poor communication • -Among clinicians • -Between clinicians and patients • Limited Guidance & Proven Outcomes: • on medical & psychological tests, exams, follow-up • -Expert consensus (ASCO, COG) • -NCCN 2013 version 1.2013 (www.NCCN.org) • Need Continuity of Care • -Absence of locus of control or central responsibility for follow-up care • -Patient centered outcomes targeting lowered healthcare costs

  18. “Why”: National StandardsQOPI –Initiatives Survivorship Quality Indicators in audit regarding survivorship: •Chemotherapy treatment summary provided to patient within 3 months of chemotherapy end. •Chemotherapy treatment summary provided or communicated to practitioner(s) within 3 months of chemotherapy end. •Chemotherapy treatment summary process completed within 3 months of chemotherapy end.

  19. “Why”: National Standards for Survivorship Care Plans by 2015 •Survivorship Care Plan is given to each cancer patient upon completion of treatment. •The Survivorship Care Plan contains a record of care received, important disease characteristics, and a written follow-up care plan incorporating available and recognized evidence-based standards

  20. “How”: Survivorship “Chronic” Care Model Community Resources & Policies Non-profits, advocacy groups Wellness communities Government agencies Delivery System Design Cancer Survivorship Care Self Management & Decision Support Health System Clinical Information Systems EHR, Care Plan Informed Activated Patient Prepared Proactive Providers Productive Interactions Functional & Clinical Outcomes Adapted from: http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2. Accessed July 25, 2011.

  21. “How”: Oncology Patient Centered Medical Home

  22. “How”: 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 2nd 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 http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011.

  23. “How”: Development 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.

  24. EPIC Treatment Summary and Survivorship Care Plan Template • Highlights: • EPIC 2012 (enhanced workflow with EPIC 2014) • @___@ 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

  25. “How”: 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 2011.

  26. “How”: 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 • Patient are in limbo- who does what? • Need ongoing professional education to bridge the gap between oncology, specialty and primary care Grunfeld , JCO; 2006, 2011 Cheung, JCO; 2009, 2010 Del Giudice, JCO; 2009 Nekhlyudov, JCO; 2009 Potosky, J Gen Int Med, 2011

  27. Opportunities for Continuing Education: Survivorship Care Training Web/Mobile Training Program • Cancer Survivorship Training for Healthcare Professionals • CE and content matter expert developed curriculum www.cancersurvivorshiptraining.com

  28.  Step 1: Survivorship Working Group Developing a Survivorship Working Group helps to ensure a cohesive team approach while communicating what survivorship care should look like for your patients. Bringing together key stake holders from all departments and collaborative practice settings is vital for a successful and productive working group. (ie., clinicians, oncology nursing, cancer rehabilitation (PT, OT, Speech), scheduling & registration, patient support services (psycho-oncology, social work, dietetics), administration, etc….). Champions and Collaboratorspromote internal support for a cancer survivorship program as well as identify essential multidisciplinary care providers. Internal support is mandatory and without it a functioning and effective program cannot be established. Identify program leadership and who will be responsible for overseeing the program development and initiation

  29.  Step 2: Needs Assessment • Implementing cancer survivorship care is best begun with a needs assessment. Patient, staff and provider input will be instrumental while determining where gaps of care may be occurring and where appropriate modes of survivorship care are already in place and working well. • Include: Patients, Providers, Staff, and Community

  30.  Step 3: Define Cancer Survivorship Services & Program Goals Utilize needs assessment data to identify services gaps Agree upon organizational definitions of survivorship care across the cancer care trajectory Define Objectives and Goals *Including meeting national standards Develop a timeline working towards program implementation

  31.  Step 4: Implementation Strategy • Determine program scope, cost, reimbursable services and strategy for implementation • Identify potential barriers to implementation • Strategies for dismantling organizational barriers • Reimbursable vs. non-reimbursable • Connect with potential collaborators to define the program goals and illicit support and formal collaboration • Define formal pathway for referral • Facilitate an in-service for providers and staff, encourage continuing education with a focus on cancer survivorship • Patient scheduling system • Medical records documentation (integration in the electronic health record) • Development of collateral materials – website content, flyers, brochures, newsletters, patient referral forms • Determine data points and how these will be collected (i.e., Excel or Access) for timely reporting of outcomes

  32.  Step 5: Implementation of Programs & Services • A step-wise implementation can be more successful than launching multiple services/programs simultaneously. Also, determine services and programs that will result in good outcomes and start there…beginning with success can set your program off to a good start! • Develop a timeline to keep development moving forward • Expect barriers and obstacles • Outreach • Develop and utilize referral pathways and ensure information flow goes both ways • Ongoing data collection of outcome variables

  33.  Step 6: Program Assessment Ongoing program assessment is essential to success. Monitoring the program’s effectiveness and making modifications when necessary will only serve to improve survivorship care. There is not one right way to deliver quality survivorship care! • Timely reporting to the working group, staff and administration, community, • Identify strategies that are working and those that continue to meet obstacles, • Meeting standards for national accreditation, • Modify services /program when necessary.

  34. “How” Does KUMC/KUCC Deliver Survivorship Care? 37

  35. Access to Services Shortly After Diagnosis Fertility PreservationConsult Cancer Genetics Consult • Nutrition Consult • Exercise Evaluation SurvivorshipCare Quality of Life Clinical Trials 38

  36. Examples of Post-Treatment Care Diet and Exercise Interventions Clinical Trials Cancer Rehab Survivorship Care Cardio-Oncology Quality of Life 39

  37. Academic Medical Center & Hospital • 9 Community Locations • Midwest Cancer Alliance- • Survivorship Clinic in Hays, KS “A Modern Family”

  38. Example: Prevention At Both Ends of the Cancer Continuum Breast Cancer Prevention Center Breast Imaging & Treatment • Early Detection • Cancer screening • Pap test • Mammogram • Fecal occult blood test • Colonoscopy • Prostate-specific antigen/Digital rectal exam • Awareness of cancer risk, signs, symptoms • Informed decision making • Survivorship • Long-term follow-up/ surveillance • Manage late-effects • Rehabilitation • Coping • Health promotion • Prevention • Diagnosis • Oncology/ surgery consultation • Tumor staging • Patient counseling & decision making • Clinical trials • Prevention • Diet/Exercise • Sun Exposure • Alcohol • Tobacco Control • Chemo-prevention • Treatment • Chemotherapy • Surgery • Radiation • Symptom management • Psychosocial care Continuum 41 Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.

  39. Access to Empirically Driven Services & Clinical Research • Follow-up continuity clinic for patients • Monitor risk of breast & related cancers • Reproductive health (fertility) & sexuality • Cardiac risk & evaluation • Endocrine/menopausal symptoms • Psychosocial/cognitive function • Genetic counseling and testing • Weight management: diet & exercise • Cancer Rehab/PT 42

  40. 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: 25.79 • BMI at time of 1st Survivorship Visit: 27.38 • Median # of minutes of exercise/week = 60-120 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.

  41. 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

  42. 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 45

  43. “Being cancer-free is not the same as being free of cancer” Julia Rowland, PhD Director, NCI Office of Cancer Survivorship 46

  44. 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, 2007 • www.cancersurvivorshiptraining.com 47

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