Written By Eric Ries | associate editor of PT in Motion
From pediatrics through palliative care, PTs and PTAs are playing important roles in improving the lives of survivors of cancer. Other health professions are taking notice and endorsing their efforts.
Lynn Tanner, PT, MPT, thinks of patients such as the girl, now 6, who was diagnosed with leukemia at 4 months old but learned to walk and gained strength through physical therapy.
“Her mom tells me she can now do everything that her brothers and sisters can, even though she had treatment at such a young age and experienced a number of side effects,” says Tanner, a rehabilitation clinical specialist in oncology at Children’s Minnesota in Minneapolis.
Reggie Matthews, PTA, always will remember the patient who “basically was functioning on 1 leg and 1 hip” after cancer surgery and feared spending the rest of his life in a wheelchair. “We built up his body strength and got him to the point that he could walk with crutches,” recalls Matthews, who’s assigned to the orthopedic floor and leukemia services at MD Anderson Cancer Center in Houston. “He was discharged. Then, I was at lunch one day and he came up to me on crutches just to say, ‘I thank you, I love you, and I appreciate everything you did for me. You helped me to believe again.’
“I can’t put into words what that meant to me,” Matthews says.
When Nicole Stout, PT, DPT, FAPTA, was an oncology physical therapist (PT) at a military treatment facility outside Washington, DC, she grew accustomed to calming and encouraging active-duty survivors of breast cancer throughout the course of their cancer treatment.
“These women were terrified,” recalls Stout, a certified lymphedema specialist, consultant, and national leader in oncologic physical therapy research and advocacy. “They’d be panicking. They’d ask me things like, ‘How am I going to get back to flying a helicopter when I have lymphedema?’ I remember a dental hygienist who was crying and shaking in her seat in my office. ‘If I can’t lift my arms over my head,’ she told me, ‘my career is dead in the water.’
“It was my job,” Stout continues, “to help them get through all that. Because when nobody else knows what to tell you about how to move your arm, or how to build up your strength, or how far you can push yourself with an exercise program, it’s the PT who steps in and says, ‘I know how to do that, and I can help you.'”
One of the patients who most deeply resonates with Amy Litterini, PT, DPT, had breast cancer that had spread to her bones and liver, rendering the mother of 2 and avid runner, who was only in her early 40s, unable to continue an activity that was integral to her self-identity. “It took a while—aquatics, using an elliptical, gradually progressing her back to road-running—but she ended up being able to run all the way through the month of July; she passed away in September,” recounts Litterini, an assistant clinical professor in the Department of Physical Therapy at the University of New England (UNE) in Portland, Maine.
“Being able to help her safely reclaim running as part of her life and hold onto it for as long as she could was among my proudest moments as a physical therapist,” Litterini says. “It was one of the most beneficial things she could have experienced toward the end of her life, and it gave me a tremendous amount of joy to help her achieve what she wanted.”
“One of the most rewarding things for me is the privilege of helping people who will not survive their cancer to complete their ‘bucket list,'” states Chris Wilson, PT, DPT, DScPT. Wilson, an assistant professor of physical therapy at Michigan’s Oakland University, is vice president of APTA’s Academy of Oncologic Physical Therapy and a member of the academy’s Hospice and Palliative Care Special Interest Group (SIG). “I’ve worked with patients who’ve said, ‘I want to get strong enough to walk my daughter down the aisle,’ or ‘I’d love one more Thanksgiving dinner with my family,’ or, ‘If I only could hold my grandchild one last time,’ and I’ve helped make those things happen,” notes Wilson, a board-certified clinical specialist in geriatric physical therapy.
“It’s all about quality of life—the quality of these individuals’ remaining life, however long that may be,” he observes.
A Growing Population
The National Cancer Institute defines a “survivor” as “one who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer,” the organization specifies, “a person is considered to be a survivor from the time of diagnosis until the end of life.”1 Stories from the likes of Tanner, Matthews, Stout, and Wilson illustrate the integral role of PTs and PTAs in optimizing cancer care throughout the lifespan. They are supported by a robust and growing body of evidence and endorsements from leading organizations across the health care spectrum.
It’s a big job. Thanks to improvements in early detection and treatment, and fed by a growing and aging American population, more than 15.5 million children and adults with a history of cancer were alive as of January 1, 2016, according to the American Cancer Society. That number is expected to grow to 20.3 million by 2026.2
The breadth of the task at hand is reflected in the goals and vision of the Academy of Oncologic Physical Therapy. “Our association consists of physical therapists and physical therapist assistants managing musculoskeletal, neuromuscular, integumentary, and cardiopulmonary rehabilitative needs resulting from the treatment of active cancer disease,” reads the description on the academy’s website. “This encompasses acute secondary sequelae of cancer treatments such as surgery, radiation therapy, and chemotherapy as well as long-term secondary sequelae of treatments and palliative care.”
The academy’s vision is “to optimize movement and quality of life of individuals impacted by cancer and chronic illness,” and each listed element of that vision is in some state of fruition. Elements range from acknowledgment of PTs as practitioners of choice in cancer rehabilitation (see “A Raft of Recognitions” on page 22) and the existence of an “abundance of rigorous research” (see “Highlighted Research” on page 23), to informing clinical practice to recognition of PTs and PTAs as “integral partners of the interprofessional oncologic team” and establishment of a clinical specialist certification in oncologic physical therapy (see “A Special Moment” on page 21). Taken together, such progress toward achieving the academy’s vision bespeaks what its president, Steve Morris, PT, PhD, describes as “skyrocketing interest in oncology rehabilitation from a physical therapy perspective.”
But it’s a rocket that didn’t reach its current height overnight. And maintaining its trajectory will require continued work to increase awareness of the many ways in which PTs and PTAs working in oncology can and are helping patients—and considerably more research into how that work saves health care dollars, say those interviewed for this article.
Dealing With Discomfort
The Oncology Section of APTA was established by the House of Delegates in 1983. Membership has fluctuated but has risen steadily in recent years, standing at 1,388 on January 1. Renamed the Academy of Oncologic Physical Therapy last year, it remains among the association’s smaller sections, despite the ever-increasing likelihood that PTs and PTAs will at some point encounter survivors of cancer regardless of the practice environment.
A big reason for the section’s small numbers, Stout believes, is the way cancer is discussed in school.
“When I was in PT school in the late 1990s—and I think to some degree we haven’t gotten past this—we were taught about cancer primarily in the negative,” she says. “We were told about the side effects, the contraindications to modalities and interventions, all the red flags. We’d hear, ‘Don’t do ultrasound in a person who has cancer.’ ‘Don’t do massage.’ ‘Restrict mobility in someone who has bone metastasis.’ Even now,” Stout says, “we don’t sufficiently teach students what physical therapy can do for people who have cancer.”
Morris concurs—and says the results are predictable.
“Given the focus on teaching cancer as a collection of pathologies—as well as the likelihood of limited exposure to patients with cancer during their clinical training—students, after graduating and entering the ‘real world,’ are being asked to treat a patient population they’re likely not that comfortable with or know all that much about,” Morris says.
Morris, a fellow of the American College of Sports Medicine, now is a distinguished professor at Wingate University in North Carolina. But he formerly was a clinician and researcher at MD Anderson Cancer Center, among other career stops. He subsequently discovered that when he would work as a PRN PT at community hospitals, a pattern would emerge.
“Once people figured out I’d had experience at MD Anderson, I got every one of the oncology patients,” recalls Morris. “I’d like to say they simply were handing off those patients to me because I had more oncology experience, but the fact is, the other therapists were reluctant to treat them. There definitely was a queasiness factor there.”
Wilson suggests, too, that something in the nature of why many PTs and PTAs entered the profession makes cancer care—particularly at the end of life—an awkward fit.
“We’re used to seeing patients’ conditions improve with our help and enjoying the satisfaction of their getting better,” he notes. “So, it can be difficult for many of us to face the challenges of working with patients who might temporarily get better but who eventually are going to pass away from their disease process. There’s an emotional component to coping with that.”
Building on Basics
Litterini has a baseline message for her PT colleagues who feel uneasy about the prospect of treating survivors of cancer: You’ve (largely) got this.
Although she’s frustrated that significant cancer rehabilitation education is not a curriculum requirement of the Commission on Accreditation in Physical Therapy Education (she sort-of jokes, “I try to crowbar as much oncology education as I can into our program”), Litterini says she reassures her students, “‘You will graduate from PT school with the basic tools you need in your toolbox to treat survivors of cancer. You know how to gait train. You know how to perform manual therapy. You know how to fit people with an assistive device. You know how to prescribe therapeutic exercise. You know all of those things.'”
As Stout succinctly puts it, “Cancer rehabilitation is rehabilitation. It’s the things that we do every day.”
Morris agrees—but adds, “These can be complex patients. They’re quite likely to have multi-organ dysfunction, range-of-motion problems, balance issues, strength issues, and increased fall risk all at the same time. Understanding the adverse effects of their treatment regimens is key,” he says. “Treating these patiently thoroughly and effectively goes well beyond just needing to help improve their aerobic capacity and muscle strength.”
To meet the unique needs of survivors of cancer, Stout notes, “We’re seeing an acceleration in postgraduate and postprofessional education—residency programs, the new specialization credential, lots of continuing education opportunities. Which is very important, because cancer rehabilitation is very much a specialized knowledge base. You’re taking what you know as a PT but applying it differently.
“There’s now good evidence,” she says, “that exercise is safe and rehab is effective with this patient population. So, we need to be able to create a rehab plan of care that integrates our basic knowledge and skills with cancer-specific elements. We need to ask questions such as ‘What do I need to know about the radiation therapy this person just had, and resulting bone fragility?’ and ‘Can I safely do a mobilization of this individual’s joint?'”
“Embrace what you do know and learn what you don’t,” Litterini summarizes. “Also, cultivate mentors—and don’t hesitate to look outside our profession.” Litterini says she was fortunate to have been mentored early in her career by “a very progressive breast surgeon who sought an interprofessional approach to managing oncologic patients and encouraged my input. Then later, I worked in a cancer center with a multidisciplinary care team, treating people with breast and prostate cancer. I sat at the table with pathologists, surgeons, radiation oncologists, medical oncologists, nurses, and social workers. I learned a tremendous amount from those colleagues about patients and their diagnoses, which I then used as a physical therapist.”
A Raft of Recognitions
Support for a bigger role for physical therapy in cancer care hardly is limited to the PTs who are advocating for it. Recent years have seen a number of significant endorsements from cancer- focused groups across health care who see PTs and PTAs as valuable members of multidisciplinary care teams.
The National Comprehensive Cancer Network (NCCN), Litterini notes, endorses “a moderate exercise program to improve functional capacity and activity tolerance” as being among nonpharmacological interventions that may ameliorate cancer-related fatigue.3 In 2016, she adds, the American Society of Clinical Oncology (ASCO) issued a clinical practice guideline on chronic pain management in adult cancer survivors that cited rehabilitation among valid nonpharmacological interventions.4
Last year, ASCO published a new guideline assessing vulnerabilities in older adults undergoing chemotherapy5 that, in Stout’s words, “strongly suggests that a rehabilitation provider should be a proactive part of the plan of care.” Specifically, the guideline as written urges “at a minimum, assessment of function, comorbidity, falls, depression, cognition, and nutrition should be carried out.”5
Also in 2018, the National Cancer Policy Forum (NCPF) of the National Academies of Sciences, Engineering, and Medicine issued Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop.6 It was, Stout says, “the first time we’ve seen specific recommendations about prehabilitation in cancer care —rehab before people even start cancer treatment.” The document also contains “specific recommendations about using rehabilitation proactively through the treatment plan of care in order to help improve long-term survivorship,” she adds.
In an article published in Physical Therapy this January, Stout described the NCPF report as “an unprecedented opportunity for the physical therapy profession to take bold steps in clinical practice, education, and research to improve long-term survivorship.”7(Stout herself has been a leader in developing a prospective surveillance model for survivors of breast cancer8—which has, in turn, been refined and revised by others to extend to survivors of other cancers and to encompass not only physical function but also cognitive function and psychosocial considerations.9-11)
Furthermore, an endorsement of the safe and beneficial role of exercise for survivors of cancer that was issued by the American College of Sports Medicine (ACSM) in 201012 is due for an update sometime this year, based on the results of a roundtable meeting held last year. Stout is eagerly anticipating that document—which, she says, “will include a comprehensive literature review to guide exercise interventions before, during, and after cancer treatments. A triage model for screening, assessment, and exercise intervention,” she adds, “will be part of this guideline and will inform rehabilitation care.”
Although Steve Wechsler, PT, DPT, called oncologic rehabilitation “booming” in a 2017 article in this magazine,13 he describes the current state of the physical therapy profession’s integration into cancer care teams in more measured terms. “It’s improving,” he says—suggesting there’s plenty of room for growth. Which, he adds, is imperative.
“I can’t overstate how important it is that rehabilitation services—provided by PTs and by occupational therapists, as well—be included in the services provided by interdisciplinary cancer teams to survivors of cancer,” says Wechsler, who is a board-certified clinical specialist in neurologic physical therapy, a clinical specialist at Memorial Sloan Kettering Cancer Center in New York City, and secretary of the Academy of Oncologic Physical Therapy. “There is so much we can be doing in terms of surveillance and screening for functional morbidities associated with cancer treatment, then intervening early to optimally manage those conditions.”
“The more evidence that comes out in support of the services we can provide to this patient population,” Wechsler says, “the easier it’s going to be for us to step into rooms and compellingly argue, ‘I should be part of this care team—for these reasons.'”
That’s exactly the point Litterini makes to her PT colleagues and students.
“We need to be familiar with and leverage all these endorsements and guidelines that have come out in support of physical therapy’s role as we advocate for referrals to assist these patients,” she says.
“I always tell my students,” Litterini adds, “if you go on a clinical rotation and you’re not seeing any survivors of cancer among the patients, ask why. If any setting in which you’re working is getting zero individuals with cancer, that’s a problem.”
She further advises students, “Know your audience and be a good marketer for your profession. If you’re working with a medical oncologist, make sure that he or she is aware of our role in the ASCO guidelines regarding chronic pain management,” Litterini urges. “It’s their association writing these guidelines. It’s not like we’re making this stuff up.”
The Economic Argument
Although Morris describes oncology rehabilitation as “increasingly reimbursable” as evidence of its efficacy grows, Stout sees a “desperate need” for more health services research on the economic impact of rehabilitation and prospective surveillance among survivors of cancer.
“Sadly,” she says, “we are woefully lacking in this area.” She points to a handful of articles related to prehab for lung cancer,14prospective surveillance for breast cancer-related lymphedema,15 “multidimensional” rehab,16 and preoperative swallowing exercises for people with head and neck cancers.17
Wilson illustrates 1 aspect of the reimbursement conundrum.
“Being on an interdisciplinary team isn’t always considered direct patient care,” he notes, “especially if you’re working at an institution that’s focused on PTs getting a certain number of procedures or seeing a certain number of patients. I practice in an inpatient setting where most patients receive Medicare or are in a DRG [diagnosis-related group]—which basically means that whether the therapist does 1 unit of a procedure or a lot of units, the hospital gets the same amount of money.
“So, there’s an indirect savings to a health care system when a PT is at the table,” Wilson continues. “We help prevent falls, urinary tract infections, and other adverse events. But it’s hard to make the direct connection between what I bring to the table at the interdisciplinary team meeting and preventing a given patient from coming back to the hospital.”
In his area of particular interest, research shows significant cost savings at end of life when palliative care is involved in the patient’s treatment plan, Wilson notes, citing a 2011 study.18 However, he adds, “there aren’t any studies that gauge physical therapy’s economic impact in palliative care specifically. The level of research simply isn’t there yet.”
On the other side of the age spectrum, “we need a lot more research” when it comes to the benefits of physical therapy in pediatric oncology,” says Lynn Tanner, who was among the founders of the Academy of Oncologic Physical Therapy’s Pediatric SIG.
“More PTs are getting interested, involved, and active as they see the role physical therapy is playing and the amazing things these kids can do,” she observes, “but PTs nevertheless are coming up to us during [APTA’s] Combined Sections Meeting programming and saying things like, ‘I still can’t get referrals’ and ‘Exercise is not being made a priority in children’s care.’ That’s where the need comes in,” Tanner says, “not only to educate other providers about the existing research, but to conduct and support additional studies of the impacts of physical therapist intervention on children’s health, quality of life, and care costs.”
A New Mindset
“When I started in cancer rehabilitation back in the late ’90s, other PTs would say things to me like, ‘Cancer? Wow! Isn’t that depressing?'” Stout recalls. “They’d ask ‘What can you actually do for people who have cancer? Should you even touch them? Should you even get them out of bed?'”
She credits the academy as having been a “driving force for promoting awareness of the benefits of physical therapy and rehabilitation” within the profession—especially among the new generation of PTs and PTAs.
“The academy has had a big presence at [APTA’s] National Student Conclave over the past decade and has been instrumental in breeding a very different perception of oncology physical therapy among the next generation of PTs,” Stout says.
“Not only do I have students coming to me in their first semester at UNE to tell me they’re already interested in exploring oncology as a career path,” she says, “but I’ve had some of them tell me during their interview, before even being admitted to the program, ‘I saw on the school’s website that your career has focused on oncology rehabilitation. If I’m fortunate enough to be offered a seat here, I’d love to work with you in some capacity.'”
“Right now,” Litterini adds, “I have some students working on a grant-funded project involving yoga videos for pediatric survivors of cancer that were designed with members of the oncology academy for use at home. I find that my students are full of fresh and innovative ideas.”
Stout is encouraged by “a handful of very innovative DPT programs around the country that are giving students an opportunity to learn about oncologic rehabilitation in a more-immersive way.” One program she singles out is Wilson’s Oakland University, which offers a certificate program in oncology that features opportunities for research projects and internships.
Stout loves seeing standing-room-only crowds at NSC sessions on oncologic rehabilitation—something she’s witnessed more than once in recent years. “Today’s students are really looking at things differently,” she says. “For some of them, it’s like, ‘Orthopedics? Neuro? What’s cool is this cancer thing!'”
Asked her assessment of oncologic physical therapy’s future, Litterini doesn’t hold back.
“It’s as good as it’s ever been,” she says, “and it just keeps getting better and better.”
Eric Ries is the associate editor of PT in Motion.
A Special Moment
“In the last 2 or 3 years we’ve hit a tipping point in recognition of and support for physical therapy’s role in cancer care, and the specialization credential is only going to accelerate our forward motion,” says Nicole Stout, PT, DPT, FAPTA. She was president of the academy (then the Oncology Section of APTA) in 2006, when the petition process for specialization began, and she now chairs the ABPTS Oncology Specialty Council.
“PTs and PTAs increasingly are educating themselves about cancer care and the important role that oncologic rehabilitation is playing and can play,” she says. “That is improving patient care, first and foremost. But it’s also elevating our presence and increasing awareness from our medical colleagues of the many ways in which we can help.
“Specialist recognition takes this to an even higher level,” Stout continues. “When a medical oncologist is confident that you know your stuff, you can talk with him or her about things such as chemotherapeutic toxicities, blood count thresholds, and exercise risk. You can discuss bone metastasis and its bearing on the evolution of your plan of care.”
“Developing a community of specialists is going to take us to a higher and better place,” she says. “It’s going to open additional doors for PTs to play roles that will have more and more patients saying, ‘A physical therapist was part of my care team and made such a big difference in my life.’ That, in turn, is going to prompt people within their cancer support group to ask, ‘Why don’t I have a physical therapist?’ That’s going to become a standard expectation. I see the impact of specialization as huge over time.”
The advent of specialist recognition gives Steve Wechsler, PT, DPT, “a lot of hope.”
“Physical therapists being able to identify themselves as oncology rehab experts will go a long way to foster conversations with interdisciplinary teams, and it may increase public awareness of the oncologic services we can provide,” predicts Wechsler, the academy’s secretary. “Specialization is going to do a lot for our profession.”
- Alfano CM, Cheville AL, Mustian K. Developing high-quality cancer rehabilitation programs: a timely need. Am Soc Clin Oncol Educ Book. 2016;35:241-249.
- Alfano CM, Zucker DS, Pergolotti M, et al. A precision medicine approach to improve cancer rehabilitation’s impact and integration with cancer care and optimize patient wellness. Curr Phys Med Rehabil Rep. 2017;5(1):64-73.
- Alfano CM, Pergolotti M. Next-generation cancer rehabilitation: a giant step forward for patient care. Rehabil Nurs. 2018;43(4):186-194.
- Cheville AL, Mustian K, Winters-Stone K, et al. Cancer rehabilitation: an overview of current need, delivery models, and levels of care. Phys Med Rehabil Clin N Am. 2017;28(1):1-17.
- Fu JB, Raj VS, Guo Y. A guide to inpatient cancer rehabilitation: focusing on patient selection and evidence-based outcomes. PM R. 2017;9(9):S324-S334.
- Gilchrist LS, Galantino ML, Wampler M, et al. A framework for assessment in oncology rehabilitation. Phys Ther. 89(3): 286-306.
- Guo Y, Fu JB, Guo H, et al. Postacute care in cancer rehabilitation. Phys Med Rehabil Clin N Am. 2017;28(1):19-34.
- Maltser S, Cristian A, Silver JK, et al. A focused review of safety considerations in cancer rehabilitation. PM R. 2017;9(9S2):S415-S428.
- Silver JK, Baima J, Mayer RS. Impairment-driven cancer rehabilitation: an essential component of quality care and survivorship. CA Cancer J Clin. 2013;63(5):295-317.
- Stout NL, Silver JK, Alfano CM, et al. Long-term survivorship care after cancer treatment: a new emphasis on the role of rehabilitation services. Phys Ther. 2019;99(1):10-13.
- Stout NL, Silver JK, Raj VS, et al. Toward a national initiative in cancer rehabilitation: recommendations from a subject matter expert group. Arch Phys Med Rehabil. 2016;97(11):2006-2015.
- Stout NL, Binkley JM, Schmitz KH, et al. A prospective surveillance model for rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl):2191-2200.
- Carli F, Silver JK, Feldman LS, et al. Surgical prehabilitation in patients with cancer: state-of-the-science and recommendations for future research from a panel of subject matter experts. Phys Med Rehabil Clin NA. 2017;28(1):49-64.
- Silver JK. Cancer prehabilitation and its role in improving health outcomes and reducing health care costs. Semin Oncol Nurs. 2015;31(1):13-30.
- Dalzell MA, Smirnow N, Sateren W, et al. Rehabilitation and exercise oncology program: translating research into a model of care. Curr Oncol. 2017;24(3):e191-e198.
- Mustian KM, Alfano CM, Heckler C, et al. Comparison of pharmaceutical, psychological, and exercise treatments for cancer-related fatigue: a meta-analysis. JAMA Oncol. 2017;3(7):961-968.
- Segal R, Zwaal C, Green E, et al. Exercise for people with cancer: a clinical practice guideline. Cur Oncol. 2017;24(1):40-46.
- Schmitz KH, Courneya KS, Matthews C, et al. American College of Sports Medicine roundtable on exercise guidelines for cancer survivors. Med Sci Sports Exerc. 2010;42(7):1409-1426.
- Santa Mina D, Sabiston CM, Au D, et al. Connecting people with cancer to physical activity and exercise programs: a pathway to create accessibility and engagement. Cur Oncol. 2018;25(2):149-162.
- Stout NL, Baima J, Swisher AK, et al. A systematic review of exercise systematic reviews in the cancer literature (2005-2017). PM R. 2017;9(9S2):S347-S384.
- Wolin KY, Schwartz AL, Matthews CE, et al. Implementing the exercise guidelines for cancer survivors. J Support Oncol. 2012;10(5):171-177.
- Krivitzky LS, Blaufuss MM, VanDenHeuvel S. Rehabilitation consideration in pediatric cancer survivors. In: Mucci GA, Torno LR, eds. Handbook of Long Term Care of The Childhood Cancer Survivor. Boston, MA: Springer US; 2015:385-395.
- Paltin I, Schofield H-L, Baran J. Rehabilitation and pediatric oncology: supporting patients and families during and after treatment. Cur Phys Med and Rehabil Rep. 2018;6(2):107-114.