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Head and Neck Cancer Survivorship - General Principles

last modified on: Tue, 01/02/2024 - 08:30

see also: Head and Neck Cancer Followup and Survivorship Clinic - Specifics

see also: Followup after treatment and Followup SCC Case Example

Cancer Survivorship

  1. Phase of the cancer continuum after completion of active treatment

    Early Detection
    End-of-Life Care

    Tobacco control


    Physical activity

    Sun exposure

    Virus exposure

    Alcohol use


    Cancer screening

    Awareness of cancer - signs and symptoms

    Oncology consultations

    Tumor staging

    Patient counseling and decision-making



    Radiation therapy

    Symptom management

    Psychosocial care

    Long-term follow-up/surveillance

    Late-effects management



    Health promotion


    Spiritual issues



     Source: From Cancer Patient to Cancer Survivor: Lost in Transition; page 24, Box 2-2.

Cancer Survivor

  1. Definition: Anyone with cancer, from time of diagnosis and treatment through the remaining years of life
  2. In 2012, there were approximately 13.7 million cancer survivors in the U.S.A.
  3. As of 2022, cancer survivors had been expected to grow to 18 million

Cancer Survivorship Background

  1. In 1996, the National Cancer Institute (NCI) established the Office of Cancer Survivorship
    1. It supports research, attempts to prevent/reduce potential adverse effects of cancer and its treatment, and provide education to healthcare professionals and survivors.
  2. Institute of Medicine (IOM) 2006 report From Cancer Patient to Cancer Survivor: Lost in Transition.
    1. Identified cancer survivorship as a distinct phase of care and outlined essential components of this care.
      1. Prevention of recurrent and new cancers and other late effects
      2. Surveillance for cancer spread, recurrence, or second cancers
      3. Assessment of medical and psychosocial late effects
      4. Intervention for consequences of cancer and its treatment
      5. Coordination between specialists and primary care providers to ensure that all health needs are met
    2. Identified gaps in survivorship care
      1. Lack of evidence-based guidelines for survivorship care
    3. Lack of integration of survivorship care into cancer treatment planning
  3. 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)
    1. Accreditation Program encourages hospitals, treatment centers, and other facilities to improve their quality of patient care
    2. Mandates all organizations create formal plan by 2014 and implement plan by 2015 to maintain accreditation
    3. Cancer Program Standards 2012 Version 1.1: Ensuring Patient Centered Care (released September, 2012).
      1. Program Management (1.1-1.12)
      2. Clinical Services (2.1-2.4)
      3. Continuum of Care Services (3.1-3.3)
        1. Standard 3.1 - Patient Navigation Process
          1. A process driven by community needs assessment to address healthcare disparities and barriers to care for patients
          2. Individualized assistance offered to patients, families and caregivers to help overcome health care system barriers
          3. Facilitate timely access to quality medical and psychosocial care
          4. Provided prior to cancer diagnosis through all phases of cancer care continuum
          5. Perform a needs assessment once in a 3 year survey cycle to identify:
            1. Population served
            2. Cancer health disparities (potential to improve)
          6. Gaps in resources
        2. Standard 3.2. - Psychosocial Distress Screening
          1. "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."
          2. Screen patients for distress and psychosocial health needs
          3. Facilitates referrals to appropriate support services
          4. Screen minimum of 1 time per patient at a "pivotal medical visit"
          5. NCCN Distress Thermometer: http://www.nccn.org/professionals/physician_gls/pdf/distress.pdf (NCCN login needed)
          6. Distress should be recognized, monitored, and documented and treated promptly at all stages of the care continuum
          7. Resource: The 2007 report from IOM, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
        3. Standard 3.3. - Treatment Summary and Comprehensive Survivorship Care Plan
          1. Personalized treatment summary includes:
            1. Record of all care received
            2. Tumor characteristics (site, stage, grade, etc)
            3. Treatments (type, regimen, dosage, clinical trials, start/stop dates)
            4. Diagnostic tests performed and results
            5. Supportive services
            6. All treating providers' contact information
          2. Comprehensive Survivorship Care Plan should include information on:
            1. Possible late and long-term effects
            2. Signs of recurrence
            3. Guidelines for follow-up care
            4. Recommendations for healthy living
            5. Supportive care resources
          3. Templates (ASCO, NCCS, LIVESTRONG, Journey Forward, etc)
        4. Patient Outcomes (4.1-4.8)
        5. Data Quality (5.1-5.7)
  4. 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)
    1. NCCN guidelines for survivorship care covers 8 distinct areas:
      1. Anxiety and depression
      2. Cognitive function
      3. Exercise
      4. Fatigue
      5. Immunizations and infections
      6. Pain
      7. Sexual function
      8. Sleep disorder
    2. Survivorship Baseline Assessment (http://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf - NCCN login needed)

Survivorship Challenges

  1. Suboptimal communication between providers
  2. Lack of survivorship standards of care and clinical guidelines that are evidence-based
  3. Limited capacity for delivering care
  4. Lack of agreement on who should provide care and care plans
  5. Need for patient and provider education
  6. Uncertainty about the right care model

Survivorship Care Models

  1. No ONE model that will be successful in ALL settings
  2. Disease-specific model
    1. Clinics established to meet post-treatment needs
  3. Comprehensive survivor clinic model
    1. 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
      1. Benefits: simple, requires few additional resources, and demonstrates value of survivorship services
    2. Multi-disciplinary clinic
      1. Survivor is seen on an ongoing basis
      2. Mostly used to provide care for adult survivors of pediatric cancer
    3. Nurse-led or Mid-level Provider-led (i.e. ARNP, PA-C)
      1. Nurse or Mid-level Provider is embedded with the treatment team and manage the survivor as an extension of the care continuum
  4. Shared-care Model
    1. Care of patient shared between 2 providers of different specialties where roles are clearly delineated
    2. Ongoing communication is essential between providers
  5. Primary Care Physician (PCP)
    1. Released from Oncologist's care once deemed low risk or after 5-10 years post-treatment
    2. Patient followed by local PCP for health maintenance and cancer surveillance

Survivorship Transition

  1. No clear guidelines
    1. Varies on medical, geographic, and resource restraints
  2. Transition immediately after treatment completion or once deemed "low risk" for recurrence
  3. NCI recommends risk-based approach with standards based on time from treatment completion and stage of disease

Survivorship Benefits

  1. Patient-centered care
  2. Provide appropriate and timely follow-up for cancer survivors
  3. Improve patient access to care
  4. Provide patient education
  5. Medical costs?
  6. Improve evidence-based medicine?

UIHC Head and Neck SUrvivorship Clinic

  1. Physician Assistant directed
  2. Transition
    1. 2 years post-treatment completion
    2. Approval by Head and Neck Surgeon
  3. Services
    1. Review medical history
    2. Perform thorough head and neck examination with flexible fiberoptic laryngoscopy
    3. Identify, monitor, and manage late effects of cancer and its treatments
    4. Provide NCCN Psychosocial Distress Screening
    5. Provide referrals to specialists (pain and symptom management, psych counseling, social worker, speech pathologist, nutritionist/dietician, etc)
    6. Provide health prevention and education
    7. Provide treatment summary and survivorship care plan

Survivorship Advocacy Organizations/Resources

  1. National Coalition for Cancer Survivorship (http://www.canceradvocacy.org/)
  2. LIVESTRONG (https://www.livestrong.org/)
  3. American Cancer Society (https://www.cancer.org/)
  4. National Cancer Institute (http://www.cancer.gov/)
    1. Facing Forward: Life after Cancer Treatment
  5. American College of Surgeons - Commission on Cancer (http://www.facs.org/cancer/)
  6. National Cancer Survivorship Resource Center
  7. Support for People with Oral and Head and Neck Cancer (SPOHNC) (http://www.spohnc.org/index.php)


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