Fox Chase Cancer Center program empowers survivors to become part of their care

Cancer survivorship care has always been and continues to be an extension of good cancer care.

Upon completion of cancer treatment, the integration of survivorship follow-up care into a patient’s health care plan is essential, according to Crystal S. Denlinger, MD.

“Survivorship care is something that we have always been providing in the clinic as a part of routine cancer care,” Denlinger, assistant professor in the department of hematology/oncology and director of the survivorship program at Fox Chase, said during an interview. “At one time, the thought was that the side effects and late effects of cancer treatment are the price that a patient pays for surviving their cancer. Within the last decade, there has been a lot of efforts that have changed minds and helped us to reconsider survivorship as a very important component of the cancer trajectory.”

Crystal S. Denlinger

HemOnc Today spoke with Denlinger about how Fox Chase’s survivorship program came about, the challenges the program has overcome and what future efforts lie ahead.

Question: How did Fox Chase’s cancer survivorship program come about?

Answer: In 2006, the Institute of Medicine released a report on cancer survivorship, which really highlighted the need to look at this group of patients — disease-free survivors, specifically — as a specific population with issues that are worth addressing. One of these needs was formal survivorship care planning. In response to this IOM report, Fox Chase formed a subcommittee that was initially part of the patient education committee to develop survivorship care plans.

I came on the faculty in 2007, joining these efforts, and worked with the subcommittee to develop our survivorship care plan. Around this time, we also realized that there was a very large number of survivors in our own clinics and that number was growing fast. These patients still needed long-term surveillance care, but not the level of care that a patient going through active treatment or someone with metastatic disease might need. So we worked to develop disease-specific survivorship clinics for all of our major disease sites.

For whatever reason, certain clinics took off more than others, and we tailored our survivorship clinic offerings to the various disease sites. For example, we currently have a separate breast cancer-specific survivorship clinic, which is a very popular clinic with two advanced care physicians. In other disease sites, this model did not work as well. For example, with gastrointestinal cancers, we did not have a large population of survivors who were referred into the disease-specific survivorship clinic, so survivorship care was folded back into the general gastrointestinal oncology clinic visit.

Ultimately we looked to each clinical program — or disease site — to develop their own clinical approach to survivors, whether it be a disease-specific separate survivorship clinic or survivorship care conducted within the setting of the general disease-specific oncology clinic. This is how the clinical portion of our program began.

Q: Who is involved in the program?

A: As we were starting to develop clinical offerings to patients and the survivorship care plan was being developed, we formed working groups that helped focus our program. We had a clinical working group comprised of multiple physicians and advanced practice clinicians, and we also developed an administrative working group that really understood how the administration and the inner workings of the institution could be used to help forward the needs of the survivorship program. In addition to all of this, we really looked at what the resources were within our institution.

It was very clear when I took over the lead of survivorship at our institution that we had a lot of people who were already doing survivorship care, but maybe it wasn’t recognized as a survivorship program. For example, the patients treated in our rehabilitation department are survivors in some way, shape or form. Our pain management group was doing a lot of work with survivors and we had a gynecologic oncologist and nurse practitioner who were treating late or long-term effects of oncologic therapy. We performed a resource assessment of our institution and Jeanes Hospital — the community hospital next door — to see what resources existed that could be incorporated into our survivorship efforts. I think this helped the program grow across the center because there were a lot of people who were interested in being recognized and being a part of the survivorship effort. People then went on to develop additional programs geared towards survivors. The rehab program developed a cancer-related fatigue program that they run twice per year; our gynecologic and genitourinary colleagues have developed treatment effects-related clinics; and our nutrition colleagues developed an outpatient clinic so that we could have our patients not only be seen in the hospital if they needed tube feeds or PPNs, but also counseling for people who are looking for nutritional guidance when going through cancer.

We already had a number of cancer screening programs that were in place, but they were more formally recognized. So we incorporated all of these services and a number of others I haven’t mentioned, and branded them as survivorship-associated services.

Q: What type of feedback have you received from survivors?

A: The more we identify survivors as a specific population, the more they feel empowered to be a part of their care. We have conducted survivorship research studies and have found that survivors are really excited to tell their story or participate in survivorship research. If we build a survivorship program, we can then ask survivors research questions that will hopefully help further build the program and tailor it to the needs of our survivor population, while making general survivorship care even better. When we developed a formal survivorship initiative in the late 2000s, people started to talk about the fact that they were interested in evaluating needs and different ways to help survivors. There is a huge amount of interest among both the clinicians and the behavioral scientists in quality of life and needs assessment of various survivorship populations. From all of this has stemmed a variety of research projects and research interests that are usually multi-disciplinary in nature and have looked at questions in gastrointestinal cancers, breast cancers and head and neck cancers, to name a few.

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Q: What makes this program different from other survivorship efforts?

A: As we established our formal program, we decided to start thinking about ways that we could celebrate survivorship. About 4 years ago, we formally started our annual survivorship celebration as a way to celebrate the fact that as a survivor, you have been through cancer and as a provider, we are celebrating and acknowledging our survivor population. We have had an annual survivor’s celebration day for the last 4 years and each year it changes in terms of a theme. Last year we partnered with The Lily Oncology Hope Murals Program and The Philadelphia Mural Arts Program. We had a full-day affair where we had survivors come in and paint a mural at the center that was installed nearby in the community. This year, we partnered with Temple University Athletics for one of their football games where we celebrated survivors. We also developed an award for advocates of cancer survivors, known as the Courage Heart Advocacy Service and Education (CHASE) Award, of which I was the first recipient. Each year, we identify an individual and an organization within our community or our center that really advocate for cancer survivors for this award.

Q: What challenges have you faced in the early stages of this initiative?

A: There have been a few challenges, some of which are systemic challenges and some of which are sort of individual challenges. I think the first one is clinician engagement and really getting your clinicians to understand that this is important and something that we need to be paying attention to. I think everyone recognizes that cancer survivorship care is inheritant to cancer care. It’s the right thing to do, it’s something that we do all the time and — if you look at the four essentials of survivorship care defined by the IOM — clinicians do them in some way, shape, or form. We assess for recurrence, we are talking to people about ways to prevent the recurrence of their cancer, we are getting them to do their cancer screenings and we are asking, assessing and intervening on any effects of treatment. We are doing all of this while hopefully providing some communication to their primary care doctor. However, we need to ensure that our clinicians are engaged in understanding the importance of survivorship care as a distinct entity of cancer treatment to ensure that needs are really met for an individual survivor. Another challenge is how we harness the power of our infrastructure to meet the mandates that are required for accreditation and how do we do this in a way that doesn’t terribly disrupt the clinical flow of a busy practice.

Q: How have you overcome these challenges?

A: I think it is a matter of working with clinicians to recognize that survivorship is a separate and important component of cancer care. In addition, we now have the Commission on Cancer mandate for delivering survivorship care plans to patients at the end of their therapy. The biggest challenge with this is figuring out how to do this in the setting of a busy clinical practice without interrupting workflow. The answer to most of this has been to utilize our advanced practice clinicians more.

We have also really worked with the administration to find out what resources we have and how we can tailor them to the things we need. For example, our EHR system does not have a computer-generated care plan that automatically populated with patient-specific disease and treatment information, so we developed templates that are gender- and disease-specific based upon the national guidelines and then figured out ways to harness whatever technology and information that we could get from the EHR to populate that care plan so that there wasn’t a huge burden placed on the clinician to type up a bunch of stuff into a text field. It really has been a lot of feedback from our clinicians and working with the administrators and the IT department to try and move things forward on a regular basis.

I think communication and feedback from both the clinicians and administrative/IT support is key to moving the program forward.

Q: How do you see the center evolving/expanding in the near future?

A: I think our program will grow both clinically and educationally. There are actually three components of a cancer survivorship program that are important. The first is the clinical program and we are going to continue to grow this by continuing to provide great clinical care to our patients while working to bring in additional clinically appropriate ancillary services. For example, within the past year we have brought in an endocrinologist who is interested in bone metabolism and we are working with Temple University Health System practices to potentially develop a more formal cardio-oncology program than what we already have. We started to partner with Temple University Hospital’s primary care physician network to try and provide primary care to cancer survivors who do not have a primary care physician or whose primary care physician does not feel comfortable taking care of a cancer survivor. I foresee in the future that we will continue to provide comprehensive survivorship care to people through our own services or through affiliated practices and collaborations.

I also foresee the research program significantly expanding. We have a very diverse group of investigators who are interested in survivorship, including behavioral scientists and surgical, medical, and radiation oncologists. So, I foresee continued expansion of the research program, especially for the disease sites that typically are understudied (such as esophagus cancer and head and neck cancer, for example). And finally, I think our educational efforts will continue to grow. In addition to our annual survivorship celebration day that happens in the fall, we have a spring event called Strength for All Seasons. This is a program that is geared towards management of the side effects of treatment. I foresee the Center continuing this program. Also, most recently we developed an educational program for our primary care partners specifically trying to provide cancer-oriented education to them and I foresee this program expanding and growing over the next few years. And we will continue to complete our goal of delivering survivorship care plans to all eligible survivors in accordance with current accreditation requirements.

Q: What type of impact can a program like this have on survivorship goals for cancer patients?

A: For every cancer survivor who is either living with or after their cancer, their goals are twofold. They want to have a significant quantity of life during and after their cancer. They are also looking for a good quality of life during this time. The idea that these patients should just live with the symptoms that developed because they were treated for cancer is unacceptable to both the survivor and the care team. I think that for a program that recognizes its resources and is highlighting the needs of survivors, the impact is great because we can have a lot of services and support to offer survivors that can impact and improve the quantity and quality of their life. We are hoping that through our clinical efforts and our research efforts, we will actually improve the day-to-day life of survivors through the development of new initiatives.

Q: Do you have any advice for leaders of other cancer survivorship programs?

A: One of the things that I have learned in going out and speaking with our various partners and with my colleagues at Fox Chase is that regardless of whether you are in a community practice or in an academic institution, developing a formal survivorship program is challenging. It’s sort of a program in evolution. I do not see survivorship programs as a vertical isolated program. In my mind, survivorship programs are matrixed throughout all other programs. It is important for the practitioners in an academic or community center, private practice, or associated with a hospital or health system to figure out what resources are currently available and get the input from people who are currently working with survivors and potentially survivors themselves. Then you must try and figure how to utilize the resources that you do have to provide and improve survivorship care. – by Jennifer Southall

For more information:

Crystal S. Denlinger, MD, can be reached at Fox Chase Cancer Center, 333 Cottman Ave., Philadelphia, PA 19111; email: crystal.denlinger@fccc.edu.

Disclosure: Denlinger has served as a scientific adviser for and received research support from Astex, Bayer, Eli Lilly and Company, Genentech, Incyte, Medimmune, Merrimack Pharmaceuticals and OncoMed.