Mackenzi Pergolotti, PhD
Adults with cancer are at high risk for functional limitations that would negatively affect their quality of life. Occupational therapy offers a range of supportive services, with the specific goal of helping these patients engage in life as independently as possible. To provide a better understanding of what occupational therapy is and its relevance to cancer patients, The ASCO Post recently spoke with Mackenzi Pergolotti, PhD, of the University of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer Center, who, with fellow researchers, conducted a review of occupational therapy services to determine their value for cancer patients.
Lack of Awareness
Please tell the readers about your position and what sparked your interest in this area of oncology services.
I am clinically trained as an occupational therapist, and I have been an occupational therapist for about 15 years. Clinically, my work spanned all ages, children and adults with cancer. In that time, I quickly realized that occupational therapy was really helping patients, but there remained a lack of awareness of occupational therapy in the cancer community.
Shortly after receiving my research training, I had a conversation with noted geriatric oncologist, Hy Muss, MD. He suggested I write a paper directed at oncologists that clearly defines the services and goals of occupational therapy in the cancer care setting. And that discussion was the impetus behind the review of the literature, which describes occupational therapy, the services we offer for adults with cancer and how to access care.
Getting the Word Out
Integrative oncology, which is playing an increasing role in treating the side effects of cancer treatments, had a long road to acceptance. Is occupational therapy gaining ground in the oncology world?
It is an underused service and part of the problem is a lack of awareness, as I’ve mentioned. That’s one reason I began research in this area. Occupational therapy improves quality of life for patients with cancer, but I agree, it will still take time to get the message out. With the big push toward understanding and improving survivorship, I think that acceptance of cancer rehabilitation at large, including occupational therapy, will come.
Occupational Therapy Basics
Please give a brief definition of occupational therapy as it pertains to people with cancer.
Occupational therapy is a patient-centered service whose interventions focus on improving health, well-being, and the patient’s overall functional capacity. The services use a variety of techniques and tools to improve a person’s quality of life with cancer. Occupational therapy interventions improve life satisfaction by enabling participation in one’s life roles, routines, and activities.
What are the most common needs in the occupational therapy setting?
Occupational therapy not only helps patients regain control of their lives, but by addressing symptoms of their treatments, it also makes their cancer care more manageable.— Mackenzi Pergolotti, PhD
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It is difficult to address that question in list form. A number of cancer-related issues may affect changes in functional status and daily routines and should be addressed, such as fatigue, cognition, pain, and peripheral neuropathy.
For adults, occupational therapy interventions could assist with skills ranging from dressing, bathing, and using the toilet to the more complex instrumental activities of daily living tasks of organizing one’s schedule for the day, balancing a checkbook, cooking, and caring for children or aging relatives. The interventions can flow between rehabilitative and/or adaptive, allowing for the occupational therapist and the patient to come together to determine what they want to work on to improve independence. Sometimes that intervention may look like an environmental adaptation, like a special tool to assist in writing or eating when numbness in the hands makes it difficult to hold utensils, and later to working through sensory and strengthening exercises to regain sensation and hand-grip strength.
An Unmet Need
Are there data in the literature about occupational therapy?
There have been several studies done in this field examining the benefits of occupational therapy and how it is being used in the clinical setting. In fact, I was one of the authors, along with Dr. Muss and others, who published the results of our 2015 study in the Journal of Geriatric Oncology.1 We analyzed data from an institution-based registry that included geriatric assessments of older adults with cancer linked to billing claims data.
We looked at 529 patients with cancer, a median age of 71 years. Of the 529 patients, 65% had at least one identified functional deficit, and of those patients, only 9% received occupational therapy within 1 year of identifying the deficit. Ours and other studies have demonstrated that occupational therapy is an unmet need among patients with cancer.
Are there tools available for oncologists to measure the need and degree of need for occupational therapy?
The best way to identify who needs occupational therapy is asking a short list of questions. For instance, ask whether they have fallen within the past 6 months or question their home life, such as whether they’ve been able to drive, go grocery shopping, or attend church. But assessment is a one-on-one conversation that’s tailored to the individual patient’s status and needs. And there are functional status measures, and quality-of-life measures, such as parts of the geriatric assessment, that although not written specifically for occupational therapy, ask about instrumental and basic activities of daily living and can still be useful to help gauge a patient’s need for occupational therapy.
Barriers to Therapy
Access issues and barriers to care are part of the oncology community’s ongoing dialogue. What barriers to occupational therapy have you identified?
There are barriers to care in the cancer and the rehab setting. Oncologists are busy focusing on the cancer they’re treating and it’s difficult for them to take time to evaluate patients’ occupational therapy needs. To that end, if we devised a two-question measurement tool, it might allow oncologists or nurse practitioners to do such an assessment. There’s also a cultural issue in which patients are reluctant to admit they are having basic functional issues on top of the cancer.
Screening Questions for Occupational Therapy
- Have you had any falls in the past 6 months?
- Have you experienced difficulty with activities of daily living or instrumental activities of daily living tasks over the past several weeks?
- Are there new upper-extremity flexibility restrictions or pain limiting everyday activities?
- Have you experienced new limitations in leisure or social activities?
- Have you experienced changes in memory, attention, or focus that have impacted participation in routine daily activities?
Moreover, most occupational and physical therapists are used to seeing patients brought in by wheelchair, stroke victims, or those with traumatic brain injury. They are not used to someone who has cancer walking in. Thus, therapists need to shift gears and think outside the box when they work up the management program. However, these are manageable barriers that can be overcome with research yielding data that will lead to wider awareness and acceptance of this valuable service.
Access and Reimbursement
How does one obtain these services, and are they reimbursable?
You start with a written referral by a physician, nurse practitioner, or physician’s assistant. Once a referral is made, patients can contact any rehabilitation facility or hospital-based occupational therapy department to find outpatient offices in their area.
Most hospitals have occupational therapy services, and if an institution does not have an occupational therapy department, a referral or prescription may be given to the patient to obtain occupational therapy services through a home-care agency or an outpatient clinic.
Patients, nurse navigators, social workers, and case managers may also call or check patients’ supplemental insurance company’s website to find occupational therapists in the area who are covered under their insurance plan. For adults older than age 65 who have Medicare, outpatient occupational therapy is covered under Part B, and most patients also have supplemental insurance to help cover the cost of coinsurance for outpatient care.
Multiple Benefits
Any final thoughts you would like to share?
Occupational therapy not only helps patients regain control of their lives, but by addressing symptoms of their treatments, it also makes their cancer care more manageable. I believe occupational therapy could have multiple benefits for patients throughout the continuum of care, even into end-of-life care. We’re working hard to break down barriers of acceptance. It will take time, but it’s worth it. ■
Disclosure: Dr. Pergolotti reported no potential conflicts of interest.
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