Strategies to Overcome Cancer Survivorship Care Barriers by Alter Endeavors

Invited Perspective

Strategies to Overcome Cancer Survivorship Care Barriers Julie K. Silver, MD In 2003, I was in my thirties and newly diagnosed with cancer. I went into treatment, received state-of-the-art care (which included extremely toxic therapies), emerged to find that I had to rehabilitate myself, and eventually transformed into an advocate for implementing cancer rehabilitation into the oncology care continuum. I have found this new focus to be, by turns, incredibly rewarding and exceedingly difficult. I have had the privilege of visiting more hospitals and cancer centers than I can count. I have met with thousands of people at various levels who are involved in survivorship care. The travel, while exhausting, has given me a view of survivorship that few health care professionals have—firsthand knowledge of how this care is being implemented throughout the United States. Throughout my travels, I have been extremely impressed by the dedication of oncology professionals to survivorship care. From small community hospitals to large academic medical centers, exceedingly dedicated individuals are committed to implementing the 10 key recommendations from the report by the Institute of Medicine (IOM) entitled, “From Cancer Patient to Cancer Survivor: Lost in Transition” [1]. In particular, two of these recommendations are being widely adopted: (1) create survivorship as a distinct phase of cancer care, and (2) ensure that every patient is given a survivor care plan. It is truly a privilege to have been invited to take part in the survivorship dialogue with so many health care professionals. In this Invited Perspective, I have an opportunity to offer suggestions that will help advance survivorship care for the more than 12 million cancer survivors in the United States and many others worldwide. I will focus on some barriers to that goal that may not be obvious. Certainly, I could describe the need for more research, clinical guidelines, and resources for the postacute care of cancer survivors. However, in this editorial, I want to share a “from the trenches” viewpoint that many health care professionals likely do not have the opportunity to witness.

RECOGNIZE THAT SURVIVOR CARE PLANS ARE ONLY AS GOOD AS THE SERVICES THEY DOCUMENT In 2006, the pivotal IOM report “From Cancer Patient to Cancer Survivor: Lost in Transition” [1] was released, and this report created a national (and international) movement to—at the very least— offer survivors an electronic document that details their diagnosis, treatment, and follow-up care. The IOM’s recommendations have challenged health care providers to change the way that cancer care is delivered. There has been an enormous response to this report throughout the oncology health care community. An editorial by oncologist Craig Earle, MD, entitled “Failing to Plan is Planning to Fail: Improving Quality of Care with Survivorship Care Plans” [2] further outlined the need to comply with the IOM’s recommendation. Many electronic survivorship plans now exist that are free to both survivors and health care professionals. The American College of Surgeons’ Commission on Cancer (CoC) is trying to ensure that the hospitals (and other facilities) it accredits comply with the IOM recommendations. In fact, beginning in 2011, CoC-accredited hospitals are attempting to offer a survivor care plan for every patient. This recommendation by the CoC is important, because as its Web site notes, “Approximately 71 percent of all newly diagnosed cancer patients in the United States are treated in the more PM&R 1934-1482/11/$36.00 Printed in U.S.A.

J.K.S. Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, MA. Address correspondence to: J.K.S.; e-mail: julie_silver@hms.harvard.edu. Disclosure: 1, co-founder Oncology Rehab Partners; 4A, consumer health books Disclosure Key can be found on the Table of Contents and at www.pmrjournal.org Submitted for publication April 21, 2011; accepted April 28, 2011.

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than 1,400 facilities that are accredited by the Commission on Cancer (CoC) of the American College of Surgeons” [3]. Everywhere I visit, discussion occurs about how to ensure that survivors obtain a plan. However, while the race is on to make certain that survivors have a care plan, it is critical to remember that a survivor care plan is only as good as the services that it documents. Survivor care plans report not only the patient’s cancer diagnosis and subsequent treatment but also present and future medical needs. They must document follow-up care—including cancer rehabilitation, if appropriate. This plan is really a “needs assessment.” Documenting the needs without providing services to respond to those needs is not helpful to the patient. In fact, the survivorship care plan is really the first step in a 3-step process. The following steps should be performed: 1. Conduct a needs assessment to identify the issues that survivors are having 2. Recommend specific interventions, including cancer rehabilitation, if appropriate, that will likely help survivors function at a higher level based on the needs assessment 3. Re-evaluate survivors to ensure that their needs are met, and if not, making further recommendations regarding follow-up care Documenting and then referring patients for appropriate follow-up care is critical to helping survivors function optimally and allowing them to have the highest quality of life possible. I have been in many meetings with health care professionals who are implementing these plans. Frequently the discussion is focused on how to produce and offer survivor care plans. When I gently remind them that the plan is only an electronic document that outlines real services, the dialogue generally turns to the important services that support the plan. Refocusing these discussions on the services and creating a plan that documents available and appropriate interventions is absolutely essential to providing the best possible care to survivors. Indeed, survivor care plans that only offer suggestions about how follow-up care should be provided but do not have real services to back them up simply are not helpful to patients. In their efforts to ensure that every survivor has a care plan, health care professionals should not lose sight of the fact that it is the services that a plan documents that are so incredibly valuable to cancer survivors.

REGOGNIZE THAT CANCER REHABILITATION IS A CRITICAL PART OF A SURVIVOR CARE PLAN It is important for all health care professionals to recognize when cancer survivors should be referred for rehabilitation. Many studies have documented the needs and benefits of cancer rehabilitation. For example, a study by Cheville et al [4] that evaluated functional problems in cancer survivors

OVERCOMING CANCER SURVIVORSHIP CARE BARRIERS

found that despite a high incidence of reported problems, the problems were rarely documented by oncology clinicians. Numerous studies that have been published recently have continued to document both the needs and benefits of cancer rehabilitation. For example, Guo et al [5] reported that asthenic patients with solid tumors or hematologic malignancies benefited from inpatient rehabilitation and made significant functional gains. A Norwegian study that included 1325 cancer survivors who responded to surveys about their rehabilitation needs found that 63% cited at least one rehabilitation need and 40% reported unmet needs [6]. The need for physical therapy was cited most often (43%). Another study by Kjaer et al [7] evaluated the impact of symptom burden on health-related quality of life in Danish cancer survivors who were participating in a rehabilitation program. This study found that of the approximately 2500 participants, nearly all (96%) reported having one or more symptoms. Most (62%) considered the reported symptom(s) to be severe. These researchers concluded, “Cancer survivors, irrespective of cancer site, experience a high burden of symptoms. Thorough monitoring and assessment of symptoms and careful scrutiny of cancer survivors’ perceptions of how symptoms affect their lives is critical for clinical identification of patients who might benefit from enhanced medical attention. . . .” [7]. It is necessary to differentiate “enhanced medical attention” that includes rehabilitation interventions (eg, physiatry or physical/occupational/speech therapy consultations) from other supportive measures (eg, massage, acupuncture, and exercise classes). It is important to identify, document, and direct cancer survivors who would benefit from medical attention to rehabilitation professionals who have expertise in cancer care. Thus, cancer rehabilitation referrals and recommendations should be part of the survivor care plan when appropriate.

UNDERSTAND THAT CANCER REHABILITATION IS REIMBURSABLE CARE Survivorship care services may vary according to how the programs are designed, but they frequently include medical care that is not reimbursed by third-party payors. In fact, both the creation of the plan itself, as well as many of the services that it may document for follow-up care in the “post-treatment” or “postacute” phase, are not covered by insurers. For example, a survivorship clinic may have an oncology nurse navigator as the health care provider who is in charge of developing survivor care plans and recommending services. This nurse likely will not be reimbursed for her time in creating the survivorship care plans, so the hospital must subsidize this effort. If a patient needs psychosocial support, the oncology nurse may refer him to a hospitalbased support group. If the patient is deconditioned and unable to return to work because of physical problems, she

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may recommend that he participate in a hospital-run exercise class. Typically the support group and the exercise class are not reimbursable by third-party payors, and thus these services are subsidized by the hospital. This lack of reimbursement for both creating the survivorship care plan and for many of the offered services is a major barrier to implementation. Not surprisingly, the lack of reimbursement has led many hospitals and cancer centers to turn to other funding sources to develop their survivorship programs. In my discussions with health care professionals who are implementing survivorship programs, I often have heard them say that the only way to create survivorship as a distinct phase of treatment is through grants or philanthropic funding. Frequently this model is not sustainable. For example, a hospital may obtain an initial grant to implement survivorship services and then not be able to secure ongoing funding. When this situation occurs, instead of providing more and better services over time, they are forced to cut back or even disband their program. Unfortunately, I have seen this scenario repeated numerous times. It is extremely discouraging to the persons who have dedicated their time and energy to develop survivorship care programs. Cancer rehabilitation is generally reimbursable care. Third-party payors typically will reimburse for individualized interventions that address survivors’ rehabilitation needs if they are performed by health care professionals who have degrees and training in this area of medicine (eg, physiatrists and physical/occupational/speech therapists). Moreover, implementing cancer rehabilitation as a core component of a survivorship program can help support other nonreimbursable services such as developing the survivor care plans and/or subsidizing support groups and exercise classes. Including cancer rehabilitation in the oncology care continuum offers a sustainable model for survivorship programs.

RELY ON REHABILITATION HEALTH CARE PROFESSIONALS WHO HAVE EXPERTISE IN CANCER CARE The next step after recognizing that cancer rehabilitation is reimbursable care is to make certain that reimbursement is being implemented appropriately. I have seen many examples of improper billing, coding, and rehabilitation treatment of cancer survivors that occurs simply because of a lack of health care providers’ expertise. It is important not only to recognize that cancer rehabilitation is reimbursable care but to have rehabilitation health care professionals (such as physiatrists, rehabilitation nurses, physical/occupational therapists, and speech therapists who have training and experience in treating persons with cancer patients) be the core multidisciplinary cancer rehabilitation team members. Survivorship care leaders in hospitals and cancer centers need to identify rehabilitation health care professionals who

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currently have expertise in cancer rehabilitation and include them when implementing this care. Specifically, an effort needs to be made to include physicians who specialize in physical medicine and rehabilitation whenever possible. Currently not enough physiatrists who have both extensive experience and a focused interest in cancer rehabilitation are available, so it is not always possible to include them. Nevertheless, physiatry input is often critical to the success of cancer rehabilitation programs. Imagine offering state-of-the-art cancer care without the input of oncologists. As cancer rehabilitation programs become the standard of care, physiatry input and leadership will be essential.

IMPROVE AND EXPAND THE EDUCATIONAL TRAINING OPPORTUNITIES IN CANCER REHABILITATION Cancer rehabilitation typically has not been taught in a comprehensive manner in medical schools, residency programs, or allied health schools. Some excellent fellowship programs are offered for physicians, including physiatrists, that are focused on cancer rehabilitation and/or hospice and palliative care (the management of patients with advanced cancer and other diagnoses). Nevertheless, many physicians and other clinicians have not had much training in cancer rehabilitation. Therefore many gaps may exist in the knowledge of highly skilled clinicians that need to be addressed through education and training. In fact, it is not uncommon for me to hear oncology professionals say that rehabilitation clinicians in their hospitals have not developed expertise in cancer rehabilitation and that this lack of expertise serves as a barrier to referrals. Much of my work has focused on how to develop best practices models for cancer rehabilitation that includes educating dedicated health care providers in a comprehensive and systematic manner so they develop the expertise they need to deliver this care.

DEVELOP A DIALOGUE BETWEEN THE ONCOLOGY AND REHABILITATION DEPARTMENTS For cancer rehabilitation to be effectively implemented, communication must occur between oncology and rehabilitation professionals who work in different departments within the same institution. An editorial by physiatrist Dr Mary Vargo titled, “The oncology-rehabilitation interface: better systems needed” [8] highlighted the need to work together in order to offer the best possible care. As with many survivor care issues, the need to develop communication channels between departments is not unique to the United States. In an editorial titled, “Physical activity and rehabilitation programs should be recommended on palliative care for patients with cancer,” [9] Turkish physi-

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cian Siobel Eyigor cited many of the reasons why developing a dialogue between oncology and rehabilitation departments is so important. Although this editorial focused on palliative care, Eyigor’s comments resonate worldwide and throughout the cancer care continuum. Eyigor stated, “Physical therapy and rehabilitation approaches are disregarded during clinical oncology practice. . .. Reasons for this may include physiatrists’ fear of end-of-life situation and complications, lack of knowledge, lack of education, scarce number of expert physiatrists, oncologist not directing patients to rehabilitation nor asking for consultation, fear of patients, lack of knowledge regarding the benefits of rehabilitation and exercise, not providing private rehabilitation units or beds for these patients” [9]. Clearly, better communication strategies that connect oncology and rehabilitation departments are needed.

CREATE PHYSICAL SPACE FOR CANCER REHABILITATION One of the things I have been acutely aware of in my travels is the state-of-the-art treatment space that many hospitals and cancer centers have developed for patients. The halls often are lined with stunning artwork, the air is scented from fragrant flower arrangements, and high-tech speakers emit soft music in symphonic coordination with gently flowing water from gorgeous fountains. Frequently a spa-like space is available where survivors can obtain wigs, try on specialized bras and breast prostheses, have massages, and even get manicures or pedicures. What I rarely see is a state-of-the-art therapeutic gym. In fact, even newly erected cancer centers that cost millions of dollars to build usually include no physical space for cancer rehabilitation treatment rooms or a gym. The lack of physical space creates a very real disconnect between the oncology and rehabilitation departments, frequently necessitating long walks or even car trips from one department to the other. I have pointed out this physical barrier to many health care professionals and hospital administrators. In one instance, a member of a planning committee for a new cancer center reported back to me that they believed it was more important to include a movie theater than a gym in their blueprint. They opted not to include cancer rehabilitation space or services at all. If I had been able to speak with the planning committee, I would have told them that I believe cancer survivors would appreciate healing as completely as possible (which requires ready access to a therapeutic gym and other rehabilitation treatment space) and being able to go to the movies in their community (not the hospital) with their loved ones and friends. I frequently have the opportunity to suggest that a vibrant and active cancer rehabilitation department, including medical consultation rooms and a state-of-the-art gym with some private treatment space, can be a major attraction in hospitals and cancer centers and will add to whatever is already available at a given institution.

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AVOID TELLING PERSONS WITH CANCER TO ACCEPT A “NEW NORMAL” UNTIL THEY HAVE BEEN OFFERED EXCELLENT CANCER REHABILITATION TREATMENT Many mantras develop in health care. In medical school, some persons in surgical specialties heard the mantra, “a chance to cut, a chance to cure.” In rehabilitation medicine, we often say, “focus on function.” In the cancer survivorship arena, one will often hear survivors being told to “accept a new normal.” The idea of accepting a new normal is valuable. However, accepting a new normal too soon, without cancer rehabilitation, means that many survivors are relegated to living with more pain, fatigue, and a host of other problems than is necessary. Telling cancer survivors to accept a new normal before they have optimized their functional status through cancer rehabilitation interventions essentially means that survivors are living with unnecessary disability and a suboptimal quality of life. Certainly cancer survivors may need to accept a new normal, but advising them to do this before they have had cancer rehabilitation is not ideal and probably does not facilitate maximal healing. Sometimes solutions are so simple that they are overlooked. The solution to implementation of sustainable survivorship care programs that offer excellent services and support survivor care plans is to include reimbursable cancer rehabilitation treatment. The solution to state-of-the-art cancer rehabilitation care services is to look to experts in this field of medicine, especially physiatrists and other core rehabilitation clinicians, for leadership.

REFERENCES 1. Hewitt M. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006. 2. Earle CC. Failing to plan is planning to fail: Improving the quality of care with survivorship care plans. J Clin Oncol 2006;24:5112-5116. 3. American College of Surgeons. Cancer program accreditation. Available at http://www.facs.org/cancerprogram/index.html. Accessed March 29, 2011. 4. Cheville AL, Beck LA, Petersen TL, et al. The detection and treatment of cancer-related functional problems in an outpatient setting. Support Care Cancer 2009;17:61-67. 5. Guo Y, Shin KY, Hainley S, et al. Inpatient rehabilitation improved functional status in asthenic patients with solid and hematologic malignancies. Am J Phys Med Rehabil 2011;90:265-271. 6. Thorsen Lene, Gunhild GM, Loge JH, et al. Cancer patients’ needs for rehabilitation services. Acta Oncologica 2011;50:212-222. 7. Kjaer TK, Johansen C, Ibfelt E, et al. Impact of symptom burden on health related quality of life of cancer survivors in a Danish cancer rehabilitation program: A longitudinal study. Acta Oncologica 2011;50: 223-232. 8. Vargo MM. The oncology-rehabilitation interface: Better systems needed. J Clin Oncol 2008;26:2610-2611. 9. Eyigor S. Physical activity and rehabilitation programs should be recommended on palliative care for patients with cancer. J Palliat Med 2010; 13:1183-1184.