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Developing and Implementing a Long Term Cancer Survivorship Program: Part II of a 2 Part Series

August 7, 2012 | AONN+ Blog | Survivorship
Featuring:
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Editor-in-Chief, JONS; Co-Founder, AONN+; University Distinguished Service Professor of Breast Cancer, Administrative Director, The Johns Hopkins Breast Center; Director, Johns Hopkins Cancer Survivorship Programs; Professor of Surgery and Oncology, JHU School of Medicine; Co-Creator, Work Stride-Managing Cancer at Work

The need to train PCPs, gynecologists, primary care NPs, internal medicine providers and others who are in the community setting and caring for patients for their chronic illnesses or to promote wellness is paramount to a cancer survivorship program functioning well.

As mentioned in Part I of this article, medical schools and nursing schools have not incorporated cancer survivorship care into the educational program of chronic illnesses and this must change. We cannot wait for this to happen however and must press forward today with providing education for those who are out in practice currently.

The NCCN is currently developing the cancer survivorship surveillance criteria for healthcare providers to follow. This will be incredibly useful for to guide and inform clinicians and patients regarding the surveillance tests, screenings for other primary cancers needed, and the intervals for both.  There also needs to be educational information regarding what potential late effects from treatment may arise years after a patient has completed their acute treatment (chemo or radiation) or chronic medical treatment (ie, hormonal therapy).

Training that is needed for PCPs, Internal Medicine Doctors, Gynecologists, Primary Care Nurse Practitioners

  1. Reinforcement of not going staging work ups as a default method to ensure the patient that he/she is fine.
  2. Long term side effects and how to recommend management of them.
  3. The physical symptoms to monitor a patient for that may signal local or distant recurrence of the patient’s cancer
  4. Criteria for when to refer the patient back to the oncology team and specifically who to contact and how
  5. How to examine the body after it has been surgically altered anatomically or has been radiated resulting in tissue changes (example, lumpectomy followed by radiation therapy—teach clinical breast exam techniques as the breast will feel quite different than it did before a diagnosis of breast cancer.)
  6. The importance of inquiring every time a cancer survivor is seen for a consultation whether he/she has any new relatives who have been diagnosed with some type of cancer.
  7. Provide resources for determining when a patient should be referred for genetic counseling and testing if additional members of the family are diagnosed with specific types of cancer after his/her treatment is completed.
  8. Discourage family practitioners from doing genetic testing in their offices using a genetics saliva collection kit. Emphasize the importance of counseling first.
  9. Provide these community providers with a hotline number or easy access resource to get information quickly when seeing a patient and a question arises.
  10. Provide continuing educational programs at specific intervals throughout the year to keep the doctors and nurses informed and updated about changes in screening, diagnosis, treatment, and other factors that may impact their long term survivorship care.
  11. Provide education regarding the psychosocial issues that survivors continue to face associated with fear of recurrence, fear of a new primary cancer forming, difficulty with management of long term side effects, emotional needs, issues associated with body image, infertility, PTSD, depression, and anxiety.
  12. Inform them about any clinical trials that may be available to their cancer survivors designed to better understand  the quality of life issues they are dealing with as well as late effects from treatment that warrant better identification, study and management.
  13. Educate them about specific life style behaviors that can help reduce risk of recurrence as well as reduce risk of new primary cancers occurring (ie, exercise, diet, smoking cessation, limiting alcohol intake, stress management ).

Cancer Survivorship Clinics within a Cancer Center Setting

Some cancer centers have established cancer survivorship clinics in which a cancer patient will be referred at a particular point in time post completion of acute treatment and will be perpetually followed for long term surveillance. This can result however in the patient remaining “attached” to an oncology specialists, commonly a nurse practitioner, rather than promoting a shared care model which includes eventually migrating the patient back to their community providers. There is also the concern of fiscal viability. Many of these survivorship clinics that are following patients forever are budgetarily running in the red and are dependent on grants and philanthropy to keep them operational. This is something that is rarely sustainable however utilizing these resources long term as funding sources. Combine this with the growing number of cancer survivorship who will be entering the survivorship program going forward and it may simply not be feasible to continue.

Staffing of a Transitional Survivorship Program

By evaluating the volume data a cancer centers and creating some projections going forward, it should be feasible to be able to determine the number of transitional consultations anticipated to be performed each year on patients as they complete acute treatment as well as how many patients at any given time a nurse practitioner would be seeing a survivor for short term follow up prior to migrating the patient officially back to their community providers. See more details below by determining the following:

  1. Look at the number of visits each oncology specialist has based on your internal protocols, broken down by stage of disease/prognostic factors and treatment received (ie, surgeon may see patient post op, then 1 month, then 3 months, then 6 months, then 12 months at which time he transfers the patient to an NP for further follow up, followed by migration officially back to the PCP). In tabulating and projecting numbers of visits by each type of provider and the timing of when they would happen, take each type of cancer treated and calculate the visit volumes. For example, for the category of stage 0 breast cancer survivors, on average 120 cases are seen and treated. The NP picks the patient up at 6 months for 2 semi –annual visits then refers the patient back to her PCP at one year post completion of acute treatment. So the number of PCP referrals would be 120 cases.  For patients with stage 1 breast cancer, the NP may be picking up the survivor also at the 6 month point and in this case following the patient semiannually for 2 years before referring the patient back to her PCP for long term survivorship care. In this case, the number of PCP referrals for long term follow up for stage 1 survivorship annually would be 80 patients.
  2. An NP will have seen the patient for the transitional consultation within 1-3 months following completion of acute treatment. The number of these types of consultations is based on the number of patients treated at your facility with specific types of cancers and had stage 0-III disease.
  3. Likely another NP will be following the patient after the physicians have completed their short term follow up protocol visits.
  4. The NP referenced in #3 then works with the patient and PCP to transfer the patient’s long term survivorship care back to the community provider.

It will be important to track your data so that statistics can be created which reflect your volumes and where they may be over or under utilization of provider resources. Whenever possible consider utilizing software for this purpose. We cannot manage what we do not measure.

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