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

July 24, 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

As we continue to see more cancer patients diagnosed, treated and thankfully surviving their cancers, we also are experiencing a decrease in the number of individuals choosing oncology as their medical specialty. Just as the 2005 report from IOM called Lost in Transition states, we need to decipher methods that can enable the oncology teams to see an increased volume of newly diagnosed while not abandoning those patients we have taken care of and have completed their treatments. This can be a slippery slope however. Here are some recommendations to consider as you plan your Long Term Cancer Survivorship Programs:

Setting Expectations Early On

Historically, cancer survivors have been followed by one or more of their oncology providers for years after their treatment is completed. It was not unusual for a doctor to tell a newly diagnosed patient that they will be having a long term relationship together. This has had two implications— the patient can feel confident that they will be monitored closely during and after treatment and into long term survivorship providing them a sense of comfort and peace of mind; the other message however implies to the survivor that he/she needs close monitoring by an oncology specialist for the rest of their life due to risk of the cancer returning. It is time now to send a new message— set a new expectation at the time of that initial consultation to discuss treatment options and care planning. The message is this— the patient will be navigated and supported throughout their treatment and will continue to be followed short term for surveillance and assessment by one or more oncology specialists. The time frame for when the patient will be transitioned to their PCP will be dependent on their stage of disease, treatment they received, prognostic factors of risk, age, and other medical considerations. The goal however is to not just transition the patient away from the oncology team at some point thus making room for newly diagnosed patients but also to send a message to the patient that the risk of recurrence diminishes as time passes, rather than remaining constant for the rest of his/her life. (My personal message to patients is that I hope they never need us again.)

Show the patient on a progressive time line chart the chronological order of their treatment that lies ahead and where the short term surveillance begins (at completion of surgery, chemo and radiation) and the anticipated length of time the patient will continue to be monitored by specific members of the oncology team. Look at each phase of treatment as a stepping stone toward wellness as a long term survivor. Also promote patient empowerment across the continuum of care.

Educate the patient that initially there are frequent visits, treatments, consultations, tests and decision making all tied to acute treatment—surgery, chemo, radiation. Then there will be short term surveillance monitoring as referenced above.

Examples of variances in surveillance follow up short term for breast cancer survivors

One size (and time frame) doesn’t fit all (patients). Someone with stage 0 breast cancer who chose to do bilateral mastectomies would have a <2% risk of getting breast cancer again and can therefore be transitioned relatively soon to her gynecologist and PCP, commonly at the one year mark post op. Someone who has had stage III  triple negative breast cancer involving neoadjuvant chemotherapy, mastectomy without reconstruction, radiation and targeted biologic therapy continues to have a high risk of local and distant recurrence and therefore would be followed by members of the oncology team (MDs and/or NPs) for likely 6-7 years before transitioning to her PCP and gynecologist.

Providing a Transitional Survivorship Consultation

Upon completion of the acute phase of treatment, it is very helpful to meet with the patient and recap what their treatment has been thus far (surgery, chemo, radiation and perhaps getting underway with hormonal therapy or other drugs) which is documented in treatment summary format. Additionally it is important for the patient to provide feedback their personal experience with cancer and its treatment by telling the nurse (nurse navigator or nurse practitioner conducting this 1 hour consultation) in a cathartic way what it was like to be diagnosed and treated. Consider having the patient tell his/her story at the very beginning of the consultation as it is therapeutic to do so and sets the stage for the next phase of care— short term surveillance monitoring—which will later be followed by long term surveillance monitoring.

It is useful to have the patient complete a “side effects” document that provides a check list of the primary side effects caused by the type of treatment received and to have the patient record on a Likert scale the degree of severity that the patient is experiencing with this side effect. The nurse can then prioritize her discussion focusing on those that are causing the greatest impact in quality of life and provide recommendations how to diminish these side effects.

The final component is the creation of a Survivorship Care Plan that must be a living document and not merely a piece of paper filed in a patient’s chart. It should include information regarding surveillance, adherence, prevention, co-morbidities, and specific which provider is to do what, when, where and why. There should also be a specific section that outlines the patient’s responsibility, thus the reference to adherence and prevention. This is where there has been confusion for patients and providers unless there is clear delineation of who, what, where, when, and why certain things are to be performed. For example, if you record on the survivorship care plan that the patient needs a mammogram in 6 months but don’t state who the patient is obtain a mammography requisition from and who will schedule it and where it is to be performed then there is risk that it won’t happen. And when it comes to prevention, this is an excellent opportunity to discuss and record changes in life style behaviors that may be increasing the patient’s risk of recurrence and/or the development of other new primary cancers. Smoking and obesity are top on that list.

Keep in mind that during the patient’s treatment, it is very likely that the patient has been navigated along every step of the way, not having to make any appointments for him/herself, or be responsible for much of anything beyond showing up for treatment. Now we are dramatically switching gears and are expecting the patient to be engaged in their survivorship care as well as self management in recognizing certain symptoms, doing self exams, practicing healthier life style habits, and adhering to long term chronic treatments that involve self medication.

A Shared Care Model works best — Transitioning from short term Survivorship care to Community Healthcare Setting

Historically, when someone is diagnosed with cancer their PCP sends them to an oncology doctor, surgical oncologist, or medical oncologist— and this referral is a one way trip. The PCP doesn’t expect to necessarily be getting this patient back again and instead the oncologist will follow the patient for the rest of his/her life. This can’t be the case anymore due to the increase in newly diagnosed patients and the decrease in oncologists to see and treat them. What is really needed now, and must be implemented over a relatively short period of time, is the idea of a shared care model. So rather than a hand off of the patient to oncology and not seeing this patient again, the PCP should remain involved in the patient’s care, even peripherally during the acute treatment phase, so that the patient continues to have his/her comorbid conditions monitored as before (diabetes, heart disease, IBS) and the oncology team keep the PCP informed across the continuum of care. As acute treatment comes to a close then PCP becomes more engaged again in the patient’s overall management until finally the PCP is assuming virtually full responsibility for the cancer survivor’s long term medical and oncologic care.

One issue of particular importance is that the patient must feel confident that whoever is following them knows what they are doing. When doubt enters the picture then patients, even if they have a low risk of recurrence, will insist upon a full staging work up that can cost as much as $11,000 in order for the survivor to have some degree of peace of mind that they are remaining cancer free. This means that a lot of education needs to be happening with PCPs currently in practice as well as incorporating cancer survivorship care into medical schools so that it is treated as a chronic illness.

Again the timing of this transference back to the PCP is based usually on risk of recurrence. There are some patients who may be retained longer due to anxiety associated reasons. However this can also result in enabling behavior on the part of the medical oncologist, or surgeon or patient. Whatever can be done to minimize that defense mechanism is important. It may be better to use a tactic that includes statistics— If a survivor insists upon being followed long term by an oncologist or even several oncology specialists without just medical reasons associated with high risk of recurrence, then consider educating the survivor about the data. In 2011 there were 12 million cancer survivors in the US. In 2012 there are 13.7 million. By the year 2020 this number is anticipated to grow to 22 million. Simultaneously by 2020, there will be somewhere between a 41% and 48% deficit of oncology specialists in the US. Inform the patient that his/her insistence in taking up an patient appointment slot results in a newly diagnosed patient being delayed in being seen and their own treatment underway.

Part II will appear in the coming weeks to continue this topic, with a special focus on the training needed of PCPs, the staffing needs of a survivorship program and other information pertinent to making a survivorship program work in your cancer facility.

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