see also: Head and Neck Cancer Followup and Survivorship Clinic - Specifics
see also: Followup after treatment and Followup SCC Case Example
Cancer Survivorship
-
Phase of the cancer continuum after completion of active treatment
PreventionEarly DetectionDiagnosisTreatmentSurvivorshipEnd-of-Life CareTobacco control
Diet
Physical activity
Sun exposure
Virus exposure
Alcohol use
Chemoprevention
Cancer screening
Awareness of cancer - signs and symptoms
Oncology consultations
Tumor staging
Patient counseling and decision-making
Chemotherapy
Surgery
Radiation therapy
Symptom management
Psychosocial care
Long-term follow-up/surveillance
Late-effects management
Rehabilitation
Coping
Health promotion
Palliation
Spiritual issues
Hospice
Source: From Cancer Patient to Cancer Survivor: Lost in Transition; page 24, Box 2-2.
Cancer Survivor
- Definition: Anyone with cancer, from time of diagnosis and treatment through the remaining years of life
- In 2012, there were approximately 13.7 million cancer survivors in the U.S.A.
- As of 2022, cancer survivors had been expected to grow to 18 million
Cancer Survivorship Background
- In 1996, the National Cancer Institute (NCI) established the Office of Cancer Survivorship
- It supports research, attempts to prevent/reduce potential adverse effects of cancer and its treatment, and provide education to healthcare professionals and survivors.
- Institute of Medicine (IOM) 2006 report From Cancer Patient to Cancer Survivor: Lost in Transition.
- Identified cancer survivorship as a distinct phase of care and outlined essential components of this care.
- Prevention of recurrent and new cancers and other late effects
- Surveillance for cancer spread, recurrence, or second cancers
- Assessment of medical and psychosocial late effects
- Intervention for consequences of cancer and its treatment
- Coordination between specialists and primary care providers to ensure that all health needs are met
- Identified gaps in survivorship care
- Lack of evidence-based guidelines for survivorship care
- Lack of integration of survivorship care into cancer treatment planning
- Identified cancer survivorship as a distinct phase of care and outlined essential components of this care.
- In 2012, American College of Surgeons - Commission on Cancer (ACOS-CoC) updated accreditation standards with additional information developed by the Standards Advisory Group for Excellence (SAGE)
- Accreditation Program encourages hospitals, treatment centers, and other facilities to improve their quality of patient care
- Mandates all organizations create formal plan by 2014 and implement plan by 2015 to maintain accreditation
- Cancer Program Standards 2012 Version 1.1: Ensuring Patient Centered Care (released September, 2012).
- Program Management (1.1-1.12)
- Clinical Services (2.1-2.4)
- Continuum of Care Services (3.1-3.3)
- Standard 3.1 - Patient Navigation Process
- A process driven by community needs assessment to address healthcare disparities and barriers to care for patients
- Individualized assistance offered to patients, families and caregivers to help overcome health care system barriers
- Facilitate timely access to quality medical and psychosocial care
- Provided prior to cancer diagnosis through all phases of cancer care continuum
- Perform a needs assessment once in a 3 year survey cycle to identify:
- Population served
- Cancer health disparities (potential to improve)
- Gaps in resources
- Standard 3.2. - Psychosocial Distress Screening
- "Multifactorial unpleasant emotional experience of a psychological, social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment."
- Screen patients for distress and psychosocial health needs
- Facilitates referrals to appropriate support services
- Screen minimum of 1 time per patient at a "pivotal medical visit"
- NCCN Distress Thermometer: http://www.nccn.org/professionals/physician_gls/pdf/distress.pdf (NCCN login needed)
- Distress should be recognized, monitored, and documented and treated promptly at all stages of the care continuum
- Resource: The 2007 report from IOM, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
- Standard 3.3. - Treatment Summary and Comprehensive Survivorship Care Plan
- Personalized treatment summary includes:
- Record of all care received
- Tumor characteristics (site, stage, grade, etc)
- Treatments (type, regimen, dosage, clinical trials, start/stop dates)
- Diagnostic tests performed and results
- Supportive services
- All treating providers' contact information
- Comprehensive Survivorship Care Plan should include information on:
- Possible late and long-term effects
- Signs of recurrence
- Guidelines for follow-up care
- Recommendations for healthy living
- Supportive care resources
- Templates (ASCO, NCCS, LIVESTRONG, Journey Forward, etc)
- Personalized treatment summary includes:
- Patient Outcomes (4.1-4.8)
- Data Quality (5.1-5.7)
- Standard 3.1 - Patient Navigation Process
- National Comprehensive Cancer Network (NCCN) developed Cancer Survivorship Guidelines in March 2013 (http://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf - NCCN login needed)
- NCCN guidelines for survivorship care covers 8 distinct areas:
- Anxiety and depression
- Cognitive function
- Exercise
- Fatigue
- Immunizations and infections
- Pain
- Sexual function
- Sleep disorder
- Survivorship Baseline Assessment (http://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf - NCCN login needed)
- NCCN guidelines for survivorship care covers 8 distinct areas:
Survivorship Challenges
- Suboptimal communication between providers
- Lack of survivorship standards of care and clinical guidelines that are evidence-based
- Limited capacity for delivering care
- Lack of agreement on who should provide care and care plans
- Need for patient and provider education
- Uncertainty about the right care model
Survivorship Care Models
- No ONE model that will be successful in ALL settings
- Disease-specific model
- Clinics established to meet post-treatment needs
- Comprehensive survivor clinic model
- Consultative service where the survivor is referred to the survivorship staff for a one-time visit whilte ongoing care continues to be provided by original treatment team
- Benefits: simple, requires few additional resources, and demonstrates value of survivorship services
- Multi-disciplinary clinic
- Survivor is seen on an ongoing basis
- Mostly used to provide care for adult survivors of pediatric cancer
- Nurse-led or Mid-level Provider-led (i.e. ARNP, PA-C)
- Nurse or Mid-level Provider is embedded with the treatment team and manage the survivor as an extension of the care continuum
- Consultative service where the survivor is referred to the survivorship staff for a one-time visit whilte ongoing care continues to be provided by original treatment team
- Shared-care Model
- Care of patient shared between 2 providers of different specialties where roles are clearly delineated
- Ongoing communication is essential between providers
- Primary Care Physician (PCP)
- Released from Oncologist's care once deemed low risk or after 5-10 years post-treatment
- Patient followed by local PCP for health maintenance and cancer surveillance
Survivorship Transition
- No clear guidelines
- Varies on medical, geographic, and resource restraints
- Transition immediately after treatment completion or once deemed "low risk" for recurrence
- NCI recommends risk-based approach with standards based on time from treatment completion and stage of disease
Survivorship Benefits
- Patient-centered care
- Provide appropriate and timely follow-up for cancer survivors
- Improve patient access to care
- Provide patient education
- Medical costs?
- Improve evidence-based medicine?
UIHC Head and Neck SUrvivorship Clinic
- Physician Assistant directed
- Transition
- 2 years post-treatment completion
- Approval by Head and Neck Surgeon
- Services
- Review medical history
- Perform thorough head and neck examination with flexible fiberoptic laryngoscopy
- Identify, monitor, and manage late effects of cancer and its treatments
- Provide NCCN Psychosocial Distress Screening
- Provide referrals to specialists (pain and symptom management, psych counseling, social worker, speech pathologist, nutritionist/dietician, etc)
- Provide health prevention and education
- Provide treatment summary and survivorship care plan
Survivorship Advocacy Organizations/Resources
- National Coalition for Cancer Survivorship (http://www.canceradvocacy.org/)
- LIVESTRONG (https://www.livestrong.org/)
- American Cancer Society (https://www.cancer.org/)
- National Cancer Institute (http://www.cancer.gov/)
- Facing Forward: Life after Cancer Treatment
- American College of Surgeons - Commission on Cancer (http://www.facs.org/cancer/)
- National Cancer Survivorship Resource Center
- Support for People with Oral and Head and Neck Cancer (SPOHNC) (http://www.spohnc.org/index.php)
References
Adler, N., Page, A. (2008). Cancer Care for the Whole Patient: Meetign Psychosocial Health Needs. Washington, DC: The National Academies Press.
American Cancer Society (www.cancer.org)
American College of Surgeons Commission on Cancer. Cancer Program Standards 2012: Ensuring Patient-Centered Care. Chicago, IL www.facs.org
Hewitt, M., Ganz, P. (2007). Implementing Cancer Survivorship Care Planning, Workshop Summary. Washington D.C: The National Academies Press.
Hewitt, M., Greenfield, S., Stoval, E. (2006). From Cancer Patient to Cancer Survivor: Lost in Transition, Washington, DC: The National Academies Press.
Jacobs, L.A. & Vaughn, D.J. (2013). Care of the Adult Cancer Survivor. Annals of Internal Medicine, ITC6-2-ITC6-16.
McCabe, M.S. & Jacobs, L. (2008). Survivorship Care: Models and Programs. Seminars in Oncology Nursing, 24(3), 202-207.
Morgan, M. (2009). Cancer Survivorship:History, Quality-of-Life Issues, and the Evolving Multidisciplinary Approach to Implementation of Cancer Survivorship Care Plans. Oncology Nursing Forum, 36(4), 429-436.
National Comprehensive Cnacer Network (NCCN) SUrivorship Guidelines January 2024 www.nccn.org