Cancer Rehabilitation and the Role of the Rehabilitation Nurse

A White Paper by the Association of Rehabilitation Nurses

Beverly S. Reigle, PhD, RN
Grace B. Campbell, PhD, MSW, RN, CRRN
Kate B. Murphy, RN, MSN, CRRN

Copyright © 2017 Association of Rehabilitation Nurses

All rights reserved. No part of this white paper may be used or reproduced in any manner whatsoever
without written permission except for brief quotations embodied in critical articles and reviews.
For information, write to the Association of Rehabilitation Nurses, 8735 W. Higgins Road, Suite 300,
Chicago, IL 60631

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 Background

Cancer survivors represent a unique population of men, women, and children

with very specific physical and psychosocial needs. Currently, 15.5 million individuals

are living with a cancer diagnosis which represents 4.8% of the US population

(American Cancer Society [ACS], 2016); Miller et al., 2016). The projected number of

cancer survivors in 2026 is 20.3 million (ACS, 2016) and by 2040, the estimate is 26.1

million. This positive trend in survival is primarily attributed to the advances in early

detection and treatment as well as the aging of the US population (Miller et al., 2016).

Of the current survivors, 62% are 65 years of age and older and by 2040, 73% of

survivors are projected to be in this age range (Bluethmann, Mariotto, & Rowland,

2016). Cancer is a disease associated with aging (Rowland & Bellizi, 2014); thus older

cancer survivors are more likely to be deconditioned, have more than one chronic

disease, and have poorer physical functioning than younger cancer survivors (Alfano,

Cheville, & Mustian, 2016). Thus, in addition to the short- and long-term cancer

treatment-related effects incurred by cancer survivors, many are dealing with age-

related morbidities. Unfortunately, little is known about the needs and use of

rehabilitation in the older cancer survivor population (Pergolotti, Deal, Lavery, Reeve, &

Muss, 2015).

Morbidities are associated with the various cancer treatments which include

modalities such as surgery, radiation therapy, chemotherapy, and hormonal, immune,

and targeted therapies. These modalities can be employed as single treatments or

administered in various combinations. Unfortunately, patients incur a myriad of

treatment-related morbidities which can significantly impact their quality of life (Mishra et

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al., 2015). These morbidities can occur during active therapy or months or years after

the completion of treatment (ACS, 2016). Importantly, many of these treatment-related

morbidities are amenable to rehabilitation (Alfano et al., 2016). Those which are most

amenable to rehabilitation interventions include, but are not limited to, fatigue, cognitive

impairment, pain, peripheral neuropathy, sexual dysfunction, balance and gait

problems, lymphedema, swallowing and communication difficulties, cardiac problems,

and urinary and bowel problems (Alfano et al., 2016, ACS, 2016). With the continued

growth of this population, the US health care system is challenged to deliver the

rehabilitation care needed by survivors in order to optimize overall functioning, reduce

disability, and improve quality of life (Stout et al., 2016). At this time, most delivery

models of care do not integrate comprehensive cancer rehabilitation services into the

cancer care trajectory.

Description of Cancer Rehabilitation

Definitions

Dietz (1980) was an early proponent of cancer rehabilitation. He described

cancer rehabilitation as the “adaptation of the patient to the disabilities and emotional

and functional changes that results from the effects of either or both disease and

treatment” (p. 3). He believed that, regardless of prognosis, responsive patients are

eligible for preventive, restorative, supportive, or palliative rehabilitation. More recently,

Silver et al. (2015) defined cancer rehabilitation as “medical care that should be

integrated throughout the oncology care continuum and delivered by trained

rehabilitation professionals who have it within their scope of practice to diagnose and

treat patients’ physical, psychological and cognitive impairments in an effort to maintain

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or restore function, reduce symptom burden, maximize independence and improve

quality of life in this medically complex population” (p. 4). A more recent description of

cancer rehabilitation revitalizes its link with cancer survivorship and highlights the role of

the multidisciplinary team in optimizing the physical, psychological, vocational, and

social functions of each cancer survivor within the limits of his or her treatment-related

effects and other comorbidities (Alfano, Ganz, Rowland, & Hahn, 2012).

Cancer rehabilitation is, by nature, a coordinated rehabilitation program in which

varied disciplines provide assessment, treatment, and support focusing on individuals’

complex medical, psychosocial, functional, and quality of life needs that are directly

related to the cancer pathology and cancer treatments (Silver et al., 2015). General

rehabilitation programs that are located in a variety of settings may provide care for

individuals experiencing acute non-cancer rehabilitation needs (e.g., post-stroke), but

who also have a history of cancer. However, when the individual’s primary rehabilitation

concerns are related to the cancer or cancer treatment, consultation with a cancer

rehabilitation specialist is highly recommended.

Impairment-Driven and Beyond

Initially, the driving force behind cancer rehabilitation as an integral part of the

cancer care continuum was cancer- and treatment-related impairments. Qualified

rehabilitation professionals could diagnose and treat specific cancer-related cognitive

and physical problems (e.g., cognitive changes, lymphedema, peripheral neuropathy,

cardiovascular issues, swallowing and speech problems). (ACS, 2016; Silver, Baima, &

Mayer, 2013; Alfano et al., 2016). However, rehabilitation experts also have specialized

knowledge related to the full scope of functional limitations and disability associated with

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cancer- and treatment-related impairments (Stubblefield et al., 2013). Functional

limitations and disability are described by The World Health Organization’s International

Classification of Functioning, Disability, and Health (WHO, 2002) as activity limitations

and participation restrictions which are disruptions in an individual’s ability to complete

daily personal and social activities related to care for self and others such as

transferring, walking, performing personal hygiene, shopping, working, and fulfilling

family roles.

Few population-based studies exist that cross the spectrum of cancers in

addressing the rehabilitation needs of survivors. However, using an institution-based

registry that included 159 older cancer survivors, Pergolotti et al. (2014) found that

65.4% experienced some type of functional limitation related to basic or instrumental

activities of daily living, and 17% exhibited a disability with regard to social activities

such as work. Additionally, using data from the National Health Interview Survey

(2000), Hewitt, Rowland, and Yancik (2003) found that adults with a history of cancer

and no other chronic disease were significantly more likely to report limitations of

activities of daily living (ADL) or instrumental ADL, functional limitations, and, for those

under 65 years of age, were unable to work due to their health compared to adults

without a cancer or other chronic disease history. Cheville (2005) reported that

functional limitations and disability are also associated with significant psychological

distress among cancer survivors. Silver et al. (2013) noted that emotional distress is

often mitigated when physical dysfunction is addressed.

Cancer Prehabilitation

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 An emerging focus in cancer rehabilitation is the concept of prehabilitation. Cancer

rehabilitation is concerned with existing impairments, functional limitations, and

disabilities that result from cancer or cancer treatments, while prehabilitation focuses on

preventing treatment-related impairments and resulting functional limitation (Silver &

Baima, 2013). Prehabilitation emphasizes interventions that enhance physical

functioning before cancer treatment begins (Carli et al., 2010; Gillis et al., 2014). This

includes physical and psychosocial assessments to identify existing functional levels

and pre-treatment impairments and to initiate a treatment program aimed at promoting

physical and psychological health and preventing future impairments (Silver et al., 2013;

Silver, 2015). Evidence from clinical trials suggest that prehabilitation interventions

including, but not limited to, general conditioning and fitness, impairment reduction

exercises, stress reduction interventions, nutrition and psychosocial support, cognitive

training, and symptom management can improve postoperative outcomes and lessen

postoperative recovery time (Gillis et al, 2014; Silver et al., 2013; Carli, 2010).

Models of Delivery and Regulatory Standards

Ambulatory Cancer Rehabilitation Model

A common model of providing cancer rehabilitation is the ambulatory services

and surveillance model in which comprehensive cancer rehabilitation is delivered in the

outpatient setting (Stout et al., 2016). An ambulatory surveillance cancer rehabilitation

model ideally incorporates regular monitoring for impairments, functional limitations, and

disability throughout the cancer care continuum, including at regular follow-up visits

(Silver et al., 2013). This model is comparable to the oncology post-treatment model

that emphasizes the surveillance of cancer recurrence, secondary cancers, or new

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primaries. Key to this model is a proactive approach to identifying rehabilitation needs

(Stout et al., 2016) and to identifying the potential for patients to develop future

rehabilitation needs. Multidimensional ambulatory surveillance models of cancer

rehabilitation prioritize physical as well as psychosocial needs of survivors (Stout et al.,

2016) and are congruent with development and implementation of Survivorship Care

Plans (SCP) as required by the Commission on Cancer (CoC, 2016).

Cancer Rehabilitation Regulatory Standards

Health care accreditation organizations have recently articulated standards for

cancer rehabilitation care. Commission on Cancer (CoC, 2016) and Commission on

Accreditation of Rehabilitation Facilities (CARF, 2014) are two such organizations that

are responding to the Institute of Medicine (2013) report that highlights a system in

crisis and the necessity for delivering a higher quality of care for patients diagnosed with

and treated for cancer.

Commission on Cancer (CoC) Standards

The CoC (2016), an accrediting body of the American College of Surgeons that

promotes quality cancer care, established standards that address rehabilitation services

in cancer facilities. To be accredited, cancer facilities must comply with several

standards addressing rehabilitation. Facilities must have policies and procedures in

place to ensure that patients have access to rehabilitation services either on-site or by

referral. In this context, rehabilitation services include, but are not limited to,

lymphedema care, pain management, physical and occupational therapy, weight

management programs, reflexology, and exercise therapy. As noted earlier, the CoC

(2016) requires SCPs for eligible oncology patients, but these plans are not required to

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include the systematic surveillance and treatment of rehabilitation needs nor specific

input from rehabilitation professionals.

Ambulatory cancer rehabilitation services are typically not systematically

integrated into the survivorship trajectory. Furthermore, little to no standardization

exists regarding the services offered; the timing of rehabilitation assessment,

surveillance, and intervention; coordination with other health providers; or the availability

of an interdisciplinary rehabilitation team (Stout et al., 2016). Finally, no standardization

exists that addresses which provider (e.g., advanced practice nurse, nurse navigator,

physiatrist, oncologist, etc.) should coordinate rehabilitation care in the ambulatory

surveillance model or the amount of specialized oncology training needed by

rehabilitation professionals (Stout et al., 2016).

Commission on Accreditation of Rehabilitation Facilities

Commission on Accreditation of Rehabilitation Facilities International ([CARF],

2014) published new standards for accrediting Cancer Rehabilitation Specialty

Programs. As the primary accreditation body for rehabilitation facilities, the CARF

standards provide a framework for organizing cancer rehabilitation programs that

prioritizes a person-centered, interdisciplinary approach to meeting unique needs of

persons who have been diagnosed with cancer. A Cancer Rehabilitation Specialty

Program may provide services at any point along the cancer care continuum and in a

variety of setting (e.g., inpatient, outpatient/community based, and home).

The CARF Cancer Rehabilitation Standards note that cancer rehabilitation “is an

integral part of cancer care” (CARF, 2016, p. 7) to ensure optimal outcomes for persons

with cancer from the point of cancer diagnosis and throughout the cancer trajectory. In

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addition to providing direct care and care coordination, accredited programs are

charged with (a) teaching self-advocacy and (b) assisting persons served, their families

and support systems to manage their own health, appropriately use and negotiate

healthcare systems and services, achieve personal health, wellness and improved

quality of life throughout their life span. The standards further stipulate that cancer

rehabilitation programs must provide “ongoing access to information, services, and

resources to enhance the lives of the person served within their families/support

systems, communities, and life roles” (p. 7). In keeping with the CARF philosophy of the

ongoing self-empowerment of individuals and their support systems, patients and

families are referred to as, “persons served.” CARF Cancer Rehabilitation standards

focus on an individualized rehabilitation care plan that addresses the specific needs of

each person and his or her support system, with comprehensive treatment provided by

the interdisciplinary rehabilitation team. All team members in a Cancer Rehabilitation

Specialty Program must regularly demonstrate competent and specialty training in

cancer rehabilitation (CARF, 2014).

Role of the Rehabilitation Nurse

Cancer rehabilitation involves a multidisciplinary approach to quality care for the

cancer survivor. Essential to providing quality cancer rehabilitation is knowledge of

cancer pathologies, the morbidities resulting from cancer treatments, and the cancer-

and treatment-related morbidities amenable to rehabilitation. Competency in

assessment, decision-making, coordination, and communication skills is a requisite for

each discipline and, certainly, nursing. However, nurses who specialize in oncology

and rehabilitation nursing are particularly positioned to employ these skills specific to

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the care of the cancer survivor. The rehabilitation nurse and the oncology nurse each

bring a unique knowledge base and set of skills to the care of cancer survivors and to

their rehabilitation needs. Currently, the knowledge and skills of each are typically

employed separately in any setting in which cancer survivorship care is provided.

However, moving toward a collaborative model of oncology and rehabilitation nursing

care is a proposal that warrants consideration. A collaborative model highlights the

importance of the two nursing specialties, identifies the shared knowledge and skills

needed to provide the highest level of cancer rehabilitation while retaining the

uniqueness of each nursing specialty, Identifying the roles of each specialty is a first

step toward undertaking the development of a proposed collaborative oncology-

rehabilitation nursing care model.

The role of the Rehabilitation Nurse in cancer rehabilitation is similar to the

Rehabilitation Nurse’s roles for any other population. The rehabilitation nurse provides

evidence-based direct care, psychosocial support, patient/family education, care

coordination, and health promotion, consistent with the ARN Competency Model (need

citation—from ARN website) to all individuals, regardless of diagnosis and across the

continuum of care.

Specific operationalization of the oncology rehabilitation nurse role varies based

upon the care setting (inpatient, such as Inpatient Rehabilitation Facility or skilled

nursing facility; outpatient, such as ambulatory clinic, or home care) and patient/family

goals. For example, cancer patients in inpatient rehabilitation may require assistance

with activities of daily living (ADLs), medication management, management of pain and

other symptoms that interfere with function, and patient/family teaching for activities of

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daily living, transfers, locomotion, bowel and bladder management, and a home

evaluation. Patients receiving outpatient ambulatory cancer care during and after cancer

treatment may require case management, screening and referral to manage

impairments such as lymphedema, balance and gait problems, radiation plexopathies,

and neurogenic bladder. Rehabilitation nurses are especially qualified to assess the

psychosocial and physical functioning of individuals with cancer across the continuum of

care. When the rehabilitation nurse identifies impairments, functional limitations, and

participation restrictions, appropriate referrals are made for services such as physical

therapy or pain management. However, the rehabilitation nurses armamentarium does

not typically include a background in functional impairments that are anticipated with

specific cancers and particularly with specific cancer treatments. The rehabilitation

nurse is best prepared to care for cancer survivors when armed with knowledge of

treatment-related morbidities; those that occur during treatment and remain long-term

as well as morbidities that occur much later in the survivorship trajectory.

The oncology nurse role specializes in promoting the screening and early

detection of cancers, the administration of specific cancer treatments such as

chemotherapy, the assessment and collaborative management of the physical and

psychosocial morbidities of the disease and related treatments, and the supportive care

of patient and caregivers. Knowledge of the types of cancer and designated treatments

and the potential treatment-related morbidities is essential to the oncology nurse’s

armamentarium. The oncology nurse institutes measures to assess and, if possible,

prevent anticipated acute, late, and long-term treatment-related morbidities and

collaboratively manages such morbidities when they occur. Identified morbidities

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amenable to rehabilitation are typically referred to a physiatrist, physical and

occupational therapist or speech language pathologist. However, greater knowledge is

warranted regarding how best to assess for and identify such morbidities. A full

functional evaluation is not typically within the oncology nurse’s repertoire and,

therefore, developing this type of evaluation skill could be very beneficial in the care of

cancer survivors.

Recommendations for the Future

The Collaborative Oncology-Rehabilitation Nursing Model requires a unified

approach from the two specialty organizations, the Association of Rehabilitation Nurses

and the Oncology Nursing Society. The ARN/ONS collaborative role requires

specialized education in both oncology and rehabilitation nursing. The collaborative

model recognizes the uniqueness of each specialty while synthesizing the essential

knowledge and skill content of each in order to support competent rehabilitation care in

the cancer population. A first step is to identify agreed upon content essential to cancer

rehabilitation and that address both the rehabilitation and oncology nursing specialties.

Determining the venues that this content is presented to each organization’s

membership is a next step and could become formalized content that is included in both

certification examinations.

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