BETHESDA, MD—A number of factors are converging to increase the need for cancer rehabilitation programs, according to speakers at a conference here hosted by the Rehabilitation Department of the National Institutes of Health Clinical Center. The ultimate goal of the conference, which was co-sponsored by the National Cancer Institute and the National Center for Medical Rehabilitation Research, is to develop a national initiative in cancer rehabilitation, including creating a research agenda, outreach plan, and awareness activities. Preliminary draft recommendations were presented at the conference.
Cancer rehabilitation, which includes addressing disabilities caused by treatment and restoring the patient to the highest level of function possible, is a multidisciplinary field that includes physicians, nurses, physical therapists, occupational therapists, psychologists, and other specialists.
Speakers said the time is right for cancer rehabilitation services to come into their own. “Cancer rehabilitation is an expanding area with a growing publications field; it's outpacing the other fields in rehabilitation,” said Julie Silver, MD, Associate Professor in the Department of Physical Medicine and Rehabilitation at Harvard Medical School, co-founder of Oncology Rehabilitation Partners, and a cancer survivor herself. “The majority of cancer survivors would benefit from rehabilitation medical care; most are not receiving it,” she added.
The need is growing, speakers said, because:
- There is a large group of cancer survivors—14.5 million—and that number is increasing. Many of these survivors are coping with treatment-related effects that interfere with their physical, mental, and spiritual well-being; these can range from generalized weakness to swallowing problems to limb difficulties to cognitive decline to shortness of breath to depression—and many more.
- There is explosive growth in the number of older Americans, who are at higher risk for cancer. This means that many older cancer patients present with preexisting comorbid conditions such as chronic obstructive pulmonary disease, cardiac problems, and arthritis. These older patients are especially vulnerable to disability due to cancer treatment, so they are prime candidates for cancer rehabilitation services, which can help them regain strength, physical function; and independence.
- Reimbursement for cancer care is moving away from fee-for-service toward a value-based model in which insurers pay a set fee for an episode of care, for example. This model favors cancer rehabilitation, because less-fit cancer patients with complications of treatment are going to have more emergency department visits and hospitalizations, which is costly for the cancer facility that has entered into a value-based, set-fee agreement with an insurer. The new Oncology Care Model being pilot-tested by the Centers for Medicare and Medicaid is an example of value-based reimbursement.
- The Commission on Cancer, which accredits most U.S. cancer institutions, now requires that a CoC accredited facility have a policy or procedure in place to access rehabilitation services for patients, either on-site or by referral.
- The Commission on Accreditation of Rehabilitation Facilities recently established standards for evaluation and consultation that can be applied in a variety of practice settings to ensure that patients receive high-quality rehabilitative care.
“We're in a unique position right now where we can define our future,” said Vishwa S. Raj, MD, Director of Oncology Rehabilitation Services at Carolinas Healthcare System/Levine Cancer Institute, the first CARF-certified cancer rehabilitation program. “Rehabilitation and survivorship are almost synonymous now. ... Reduction of cost is a major focus of health care reform; we need coordination of oncology and rehabilitation. Rehabilitation professionals are cost-effective.”
Currently, however, cancer rehabilitation services are an undertapped resource in oncology: “We need to get the right person in place to get the right service to the right patient at the right time,” said Nicole L. Stout, DPT, CLT-LANA, the conference facilitator, an oncology-specialty physical therapist, clinical researcher and health care consultant in the Office of Strategic Research at NIH's Rehabilitation Medicine Department, and co-founder and Vice President of LexicaMED Inc., a health care data solutions firm. “It really does come down to function,”
Too often, oncologists are not identifying the issues and not making the referrals, said Michael D. Stubblefield, MD, Medical Director for Cancer Rehabilitation at the Kessler Institute for Rehabilitation. This may be at least partly due to the fact that many oncologists are trained at tertiary care centers and have not been exposed to outpatient cancer rehabilitation services, added Stubblefield, who is also National Medical Director of Cancer Rehabilitation at Select Medical Corporation, where he is responsible for establishing cancer rehabilitation programs in communities nationwide. “Now I'm working with community hospitals; some oncologists have no one to refer to and we want to be there by referral.”
Several speakers said that cancer rehabilitation specialists need to step forward and let oncologists know about their skills and their successes. “We often wait to be invited, instead of inviting ourselves,” Silver said.
When invited, “one good patient outcome can change the view of the acute care provider,” said Brent Braveman, PhD, OTR/L, FAOTA, Director of Rehabilitation Services at the University of Texas MD Anderson Cancer Center. Asked in an interview to name the major problem in the cancer rehabilitation field, he said unhesitatingly, training—that many physical therapists do not receive cancer-specific training in their education programs. Many of them have to do everything from orthopedics to arthritis to cardiology.
At MD Anderson, in contrast, “my staff goes through a 12-week orientation program.” Asked if he foresees more specialty oncology training programs in cancer rehabilitation, he said yes.
‘Restore, Maintain, and Improve Function’
“Function is a broad, complex construct... Our goal is to restore, maintain and improve function,” said Laura Gilchrist, PT, PhD, Professor in the Doctor of Physical Therapy Program at St. Catherine University and a clinical research scientist in the oncology program at Children's Hospitals and Clinics of Minnesota.
She stressed the need for accountability, adding, “We want to measure details about how this patient is functioning; we cannot forget that we have people paying for this,” and payors want to see results. Gilchrist said that high-quality cancer rehabilitation services should encompass symptom burden; patient fluctuations in status due to treatment; disease regression and progression; common severe toxicities; and existential distress and mood issues. There is often a gap between a patient's actual performance and the patient's perceived performance, which is why accurate functional measurement tools are important.
Barry D. Brooks, MD, Medical Director and Chairman of the US Oncology Network P&T Committee, called himself a strong believer in cancer rehabilitation: “This is one of my passions. I believe very strongly in this; it's an unmet need.” The US Oncology Network, he noted, has a managed care Medicare Advantage plan with Aetna, and “it's just a new world now that we are responsible for all of the patient's care.”
With older patients who already have comorbid conditions and then embark on cancer treatment, “we put extra weight on them,” he said. “It sets them up for things like pneumonia, thrombosis, and falls leading to broken wrists and hips.” But if older patients who have generalized weakness are receiving occupational therapy and physical therapy regularly, these services “keep the people walking, talking, and flexible and strong,” Brooks said.
Julia H. Rowland, PhD, Director of NCI's Office of Cancer Survivorship, agreed with Brooks on the pressing need for cancer rehabilitation services for older cancer patients. “Cancer is a disease of aging,” she noted, and for that reason the services of specialists in cancer rehabilitation will grow as the aging population grows.
Some of the preliminary draft recommendations presented at the conference were the following:
- Research is needed to standardize clinical cancer rehabilitation models;
- All institutions involved in the education of health care professionals should assess their current training programs and evaluate opportunities to improve and expand training in cancer rehabilitation;
- All institutions involved in delivering oncology care should evaluate their gaps in cancer rehabilitation medicine;
- Clinical training materials, educational courses, and conference lectures on cancer rehabilitation should be developed and given by subject matter experts who have formal training and licensure and/or board certification in rehabilitation medicine;
- Cancer patients, survivors, providers, and payors need to be educated that meeting rehabilitation, and psychosocial, and palliative needs is an integral part of quality cancer care; for providers, this educational training needs to be incorporated into initial professional education, certification examinations, and ongoing continuing education; and
- Research-granting agencies should identify opportunities to support the integration of cancer rehabilitation clinical services into the delivery of high-quality oncology care.