Cancer Rehabilitation: CARF International Standards for Cancer Rehabilitation Specialty Programs
Nicole L. Stout DPT, CLT-LANA1, Christine M. MacDonell2,
- Office of Strategic Research, Rehabilitation Medicine Department, Mark. O. Hatfield Clinical Research Center, National Institutes of Health. Bethesda, MD.
- Medical Rehabilitation, CARF International. Tucson, AZ.
Disclaimer: The views expressed are those of the authors and do not represent the opinions, policies or positions of the United States Government, The Department of Health and Human Services nor the National Institutes of Health.
Abstract: The Commission on Accreditation of Rehabilitation Facilities (CARF) provides world-wide accreditation services for health and human services, including medical rehabilitation programs. In 2013, CARF convened an International Standards Advisory Committee that developed 30 standards for Cancer Rehabilitation programs. This paper highlights the CARF standards as an evidence-based, expert consensus on best practices for a Cancer Rehabilitation program that can support the development of rehabilitation programs in a Breast Center.
Every patient facing a diagnosis of breast cancer is at risk for a host of disease treatment side effects that may negatively impact their physical and psychological function. (1) Surgery, chemotherapy, radiation therapy, targeted agents and hormonal therapies all have side effects, both immediate and long-term, associated with diminished function; inhibiting return to work and performance of activities of daily living. (2) The burden of functional impact is significant, with over 60% of patients reporting at least one functional impairment during or after treatment for breast cancer. (3) The impairments are most significant throughout the duration of care and a notable number will continue as chronic conditions into survivorship.
The current model of care delivery for the patient with cancer frequently fails to address the functional side effects of cancer treatment until a critical threshold of disability is reached. At this point the condition, likely having progressed in severity, leaves a patient with a chronic issue with which to contend.. The prolonged latency period for managing functional impairments is problematic, especially in light of the evidence to support rehabilitation examination and ongoing assessment for early detection of functional impairments.(4, 5) An ideal model of care proactively addresses physical function from diagnosis throughout the continuum of disease treatment.(6) Such a model of care would assure comprehensive, ongoing functional assessment regardless of the care setting, discipline of the care provider, or point along the lifespan continuum. The Commission on Accreditation of Rehabilitation Facilities (CARF) International identified this deficit in care delivery and the potential for a rehabilitation model to provide a solution. CARF worked collaboratively with experts in cancer rehabilitation, consumers and family members to outline a set of standards that are useful in developing a comprehensive program to proactively manage the functional needs for the person with cancer.
Shortcomings in Current Delivery System Design
Cancer care is unique in its delivery in that it takes place over a protracted time period with multiple touch points by health care providers of various disciplines. Cancer mitigating therapies are fraught with complicating side effects, frequently magnified with cumulative dose that may occur during or after their administration. The side effects experienced may impact multiple body systems, further complicating the matrix of providers, tests, and interventions used to manage the overall care for the patient.
Such a complex, multifaceted treatment approach lends itself to variance in care that is often fragmented. Combine these constraining factors with the multitude of settings where patients receive treatment for their disease and the recipe for disparate care only becomes stronger. Amid the medical continuum of disease treatment, there has historically been little attention paid to the functional sequelae experienced by patients. The reasons for this fragmentation are many.
- lack of provider awareness that evidence-based interventions exist to mitigate or prevent functional decline
- intense focus on disease treatment and it’s life-threatening sequelae
- lack of integration of rehabilitation providers into the continuum of medical management
- rehabilitation models of care that relied on impairment-based interventions delivered on an ad hoc basis when the patient met critical threshold of disability(7)
The Institute of Medicine (IOM) decried this fragmented approach as detrimental to care outcomes and, through a series of publications, suggested a way forward to improve comprehensive cancer care.(8) IOM efforts have led to the development of comprehensive care models, suggesting improved care through prospective, evidence-based design. (9) Further steps have been taken to assure quality and integration of such models through accreditation of cancer centers and breast programs, such as the National Accreditation Program for Breast Centers. CARF International recognized the need to establish standards towards improving the care delivery of rehabilitation for the individual going through cancer treatment.
CARF Program Standards as a Model Solution:
CARF has an established and recognized process for assisting health care systems to develop person-centered, high quality, accredited programs in a variety of comprehensive rehabilitation settings (acute care, outpatient, home care) and based on specific diagnoses. CARF is an independent, nonprofit accreditation organization of health and human services with over 50,000 accredited programs world-wide in specialty areas such as; behavioral health, aging, spinal cord injury, chronic pain, pediatrics and others .
In 2013 CARF convened an International Standards Advisory Committee (ISAC) to review the evidence base for cancer rehabilitation programs and develop specialty program standards. The ISAC developed 30 specialty program standards for Cancer Rehabilitation that underwent a peer and public review process. In 2014, the Cancer Rehabilitation specialty program standards were introduced and, as of this publication, the first program has been accredited with over 25 additional applicants seeking accreditation.
The Cancer Rehabilitation specialty program standards were developed with a strong base of evidence supporting the rehabilitation continuum of care for individuals with cancer. The program recognizes a comprehensive model for rehabilitation that encompasses workforce competency and care delivery for the preventive, restorative, supportive and palliative needs of individuals. (Figure 1 below) This construct is based on the Dietz model of cancer rehabilitation care and is foundational to care delivery in the cancer population.
The goal of a specialty program in cancer rehabilitation is to strategically optimize functional outcomes from the time of diagnosis through the trajectory of cancer treatment and survivorship in an effort to prevent or minimize the impact of impairments, reduce activity limitations, and maximize the individual’s participation. Program standards establish communication and collaborative care delivery among the entire oncology healthcare team.
The standards are designed to be centered around the preferences, strengths and needs of the patient and their family and a strong emphasis is placed on independent self-management skills. The CARF standards for Cancer Rehabilitation specialty programs have a special emphasis on the lifespan management and view cancer as a chronic disease.
Tools to Support Clinical Implementation
The new Cancer Rehabilitation Specialty Program standards have been rolled out and CARF is actively educating programs around the world regarding their implementation. The CARF Cancer Rehabilitation Specialty Program standards include recommendations for clinical work flow in cancer rehabilitation that recognize the patients’ functional needs from the point of diagnosis, through cancer medical management and into survivorship as well as the needs of patients in palliative care. The standards provide guidance for Cancer Rehabilitation program development including: clinical care, policy initiatives, community outreach, caregiver education, outcomes measurement, quality metrics, and professional workforce development.
In developing a comprehensive breast cancer center, it is imperative to include rehabilitation services. CARF is an international organization providing standards for the development of Cancer Rehabilitation Specialty Programs. These standards and CARF accreditation are tools that enable the development of a successful breast care center focused on the individual and on continuous quality improvement of the program.
In the presence of a comprehensive rehabilitation program and a comprehensive breast cancer program there is congruence in the patient care delivery model sufficient to enable the development of a CARF-accredited Cancer Rehabilitation Specialty Program.
Further information about CARF accreditation and the Cancer Rehabilitation Specialty Program Standards can be obtained through www.carf.org/cancer.
- Campbell KL, Pusic AL, Zucker DS, McNeely ML, Binkley JM, Cheville AL, et al. A prospective model of care for breast cancer rehabilitation: Function. Cancer. 2012;118(8 Suppl):2300-11.
- Silver JK, Gilchrist LS. Cancer rehabilitation with a focus on evidence-based outpatient physical and occupational therapy interventions. Am J Phys Med Rehabil. 2011;90(5 Suppl 1):S5-15.
- Schmitz KH, Speck RM, Rye SA, DiSipio T, Hayes SC. Prevalence of breast cancer treatment sequelae over 6 years of follow-up: The Pulling Through Study. Cancer. 2012;118(8 Suppl):2217-25.
- Springer BA, Levy E, McGarvey C, Pfalzer LA, Stout NL, Gerber LH, et al. Pre-operative assessment enables early diagnosis and recovery of shoulder function in patients with breast cancer. Breast Cancer Res Treat. 2010;120(1):135-47.
- Stout Gergich NL, Levy, E., Springer, B., Pfalzer, L., McGarvey, C., Gerber, L., Soballe, P. Pre operative assessment enables early detection and treatment of shoulder impairments related to breast cancer treatment. (abstract). Cancer Research. 2009;69(suppl)(2).
- Gerber LH, Stout NL, Schmitz KH, Stricker CT. Integrating a prospective surveillance model for rehabilitation into breast cancer survivorship care. Cancer. 2012;118(8 Suppl):2201-6.
- Cheville AL, Beck LA, Petersen TL, Marks RS, Gamble GL. The detection and treatment of cancer-related functional problems in an outpatient setting. Support Care Cancer. 2009;17(1):61-7.
- Hewitt M, Greenfield S, Stovall E. Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: 2006.
- Stout NL, Binkley JM, Schmitz KH, Andrews K, Hayes SC, Campbell KL, et al. A prospective surveillance model for rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl):2191-200.
For more information, please contact Nicole Stout [Nicole.Stout@nih..gov] or 301-253-5219
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Sunday March 15, 2015 during the Survivorship Break Outs
Rebecca V. Nellis, MPP
For the 42% of cancer patients diagnosed at working age, there are many factors to consider as they contemplate working through treatment. Practical concerns such as managing side effects at work, as well as questions about finances and health insurance play a large role. But there are also more subtle factors to consider such as how closely a patient’s job is tied to their sense of identity. In this session, we will explore these considerations as well as key questions that may be used to facilitate a patient’s concerns about whether or not to work through treatment. The conversation will also touch briefly on the Americans with Disabilities Act and how its provision of reasonable accommodations might play a role in a patient being able to work through treatment.
Disclosure: What Survivors Need to Consider
Sunday March 15, 2015 during the Survivorship Break Outs
Rebecca V. Nellis, MPP
For cancer survivors, the question of whether or not to disclose their diagnosis in the workplace is essential to consider when planning for ongoing treatment and recovery. There are benefits and drawbacks to both choices. The decision choices are tied to the personal circumstances of the patient, practical considerations, as well as to legal considerations on both the state and federal levels. This session will explore the many facets of this basic yet complex question, and enable attendees to help their patients make an informed decision. The dialogue will also explore techniques for planning a workplace disclosure including identifying who and what to tell, and how to approach the conversation.
Survivors Taking Charge: Exercise and Cardiovascular Health
Tuesday March 17, 2015 during the Survivorship Post Conference
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Exercise has been shown to improve cardiovascular fitness, body composition, depression, and fatigue and helps to maintain weight in breast cancer survivors (BCS). The Yale Fitness Intervention Trial (Yale FIT) was a 12 month exercise intervention trial that randomized 154 BCS to a supervised aerobic-resistance fitness center group or a home-based physical activity group. The average age was 51 years and nearly two-thirds of the women were overweight. An exercise stress test was used to assess cardiovascular fitness. Both groups improved time on treadmill from baseline to 6 months but compared to the home based group, the fitness center group significantly improved time on treadmill (p=0.05). The fitness center group also significantly improved heart rate recovery (p=0.01) compared to no change in the home-based group. Exercise improved aerobic fitness, but type of endocrine therapy, weight status, and total physical activity expenditure over the 12 months of the trial influenced body composition and metabolic outcomes that are associated with cardiovascular disease risk factors.
Nathalie Johnson, MD, FACS
Dr. Nathalie Johnson is a practicing surgical oncologist and Medical Director of the Legacy Cancer Institute and the Legacy Breast Health centers in Portland, Oregon. She grew up on St. Thomas in the US Virgin Islands. She attended Howard University in Washington DC where she obtained a bachelors degree in Radiation Therapy Technology. She went on to matriculate at the Medical College of Virginia, now VCU, and In Richmond and completed her residency in general surgery at Los Angeles County-University of Southern California. She spent a brief time in the Virgin Islands serving as the Commissioner of Health for the territory. She is currently in leadership of Legacy Health Systems Cancer Institute; she has served on the Oregon Medical Board and the American Board of Surgery as an at large member. She has a passion for improving the care and outcomes of cancer patients as well as access to affordable, appropriate care. This has led her to serve also on the Board of Care Oregon and The Susan G Komen Oregon/SW Washington affiliate.
More recently, she joined the ranks of cancer survivors. This is a journey with life lessons that she shares with patients and colleagues. In medicine, it is important to treat the body and support the soul.
Hear more about our Keynote speaker below: