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    Expert Nurse
    Avatar photoKrista Rubin

      Does your practice currently employ formal survivorship plans?

      Expert Nurse
      Avatar photoRajni Kannan

        We are now required under the OCM rules to meet a certain percentage of survivorship care plans per year. What I find interesting is that Medicare does not recognize stage IV patients as part of the OCM bundle for survivorship.

        There is minimal information currently available about immunotherapy survivors in any of the cancers. Studies are needed to look at the finciancial, psychological, spirtitual and emotional long term side effects immunotherapy patients face along with residual physiological side effects.

        Expert Nurse
        Avatar photoLisa Kottschade

          We too are required to have these survivorship care plans in place. Unfortunately the timeline for doing these is a little bit tight and we are definitely missing people. I think long term follow up for patients who have gotten IO therapy both in the adjuvant setting and for those with long term responses in the metastatic setting is going to be crucial. I think we are going to potentially see more long term rheumatologic conditions as well.

          I agree with the comments regarding stage IV patients above. This is a very unique population now in that we are managing more and more patients like a chronic disease, with long term survivors.

          Expert Nurse
          Avatar photoMollie Reed

            I work at a practice that has adopted OCM guidelines and therefore, we, too, are required to complete survivorship plans. As mentioned above, Stage IV patients are exempt. This is certainly a reflection on the fact that we historically have had few durable responses in patients with Stage IV cancer (melanoma among other tumor types), but as we know, IO has changed the face of melanoma and other cancers. That being said, we are completing survivorship plans for patients with other stages. I do believe that we are going to see more a more late immune-mediated adverse events that occur as we follow these patients longer and longer. Also, as previously mentioned in another post, fertility issues/safe childbearing, etc. is going to be another major topic in survivorship with our young patients, as we really have no data about how these drugs could impact a pregnancy after the mother has completed therapy and drug is presumably washed out. We know, from experience, that the immune system can continue to be upregulated for a durable amount of time.

            Expert Nurse
            Avatar photoKathleen Madden

              What are some of the barriers that you have encountered with creating these required survivorship care plans? How have you addressed these barriers?

              I know in my practice, time is a number one barrier is time both meeting with patients and then entering the required information is the greatest issue. We try to identify patients before they come in for their appointment and will often mail them thier completed care plan.
              Additionally, we are working with our IT team to upgrade some of the integration features in our EMR to help make the templating process more fluid, currently the most applicable information is input by hand.

              Patients often greet this with appreciation but I often question how helpful this actually is for our patients in the current context to their care and how can we make this more meaningful for them? A work in progress…

              Expert Nurse
              Avatar photoMollie Reed

                TIME, TIME, TIME is the greatest barrier. In our practice, it has fallen to the NPs to complete these. I will say, too, that it is rather awkward when a patient has been a “survivor’ for quite some time and we’re now presenting them with a plan. We do have a team of navigators identifying patients before the appointments. However, I have heard of some places that have a team that does only Survivorship – in other words, a NP designated to this alone.

                Expert Nurse
                Avatar photoVirginia Seery

                  Our institution has a template that we use for survivorship care plans. We are alerted by someone from our Health Information Management Dept. that the patient needs one before they come in and a template is included with some of the patient’s specific information which saves some time. Providers review and edit the document for accuracy and fill in any blanks. This process is helpful.

                  I agree with Suzanne about the awkwardness of completing one of these for a patient who has been free of disease for some time. Also, the term “survivor” is not appreciated by all of our patients.

                  Expert Nurse
                  Avatar photoMollie Reed

                    Yes – we, too, have a template. It does save some time, but some of the info can be a little boilerplate. But, at least it’s helpful when trying to complete these plans on top of everything else. It’s sad, though, because these are supposed to help the patients but in all honesty are one more requirement actually taking time away from patients as we hustle to complete these.


                    Thank you for these great comments about survivorship plans. In looking at this issue, we recognize that many of the issues that IO-treated patients with melanoma face long-term differ from those, say for a patient with breast cancer who has received chemotherapy. If you could modify these boilerplate templates for your patients living with melanoma (ie, perhaps a better term than survivors), what would you include?

                    Expert Nurse
                    Avatar photoKrista Rubin

                      Good question. In thinking about “survivorship issues: that would be specific to an I/O patient, I would include the following- this is just off the top of my head, and a start. I am sure I am missed many components. Would be great if others would add to this….

                      Management of physical symptoms
                      * Arthralgias/joint pains
                      – need for chronic analgesia, safety mobility issues, need for PT
                      * Neuropathy
                      – need for chronic analgesia, safety/mobility issues, need for PT, is patient safe to drive?
                      * Xerostomia-
                      – oral hygiene, F/U with dental
                      * Scar management
                      * Lymphedema
                      * Physical limitations impacting work
                      * Other

                      * Vitiligo, scar, [body image issues]
                      * Anxiety
                      – particularly around restaging scans- “scananxity”
                      – do they identify with the term “survivor”
                      * Depression
                      * Impact on personal relationships
                      * Impact on work-related relationships

                      * If hypothyroid–> likely lifelong replacement
                      * If hypophysitis–> likely lifelong replacement (possibly multiple hormones)
                      * Adrenal insufficiency
                      – temporary vs permanent will indicate need (or not) for lifelong replacement
                      – plans for “sick day” steroid dosing, need for medical bracelet
                      * Other

                      If the patient was on long-term steroids for toxicity
                      * Addressing bone health: calcium supplements, Dexa scan, etc.
                      * Hyperglycemia/DM
                      * Other

                      Family Planning
                      * Recommendations for pregnancy avoidance, and if so, guidance about how long to wait
                      * Other

                      Expert Nurse
                      Avatar photoMollie Reed

                        Maybe chronic fatigue, chronic taste changes, financial impact and ability to get disability insurance to protect family, sexual impairment with endocrinopathies (hypophysitis etc).

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