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The Prevention of Disablement: A Framework for the Breast Cancer Trajectory
More than 2 million women in the United States are breast cancer survivors. This is largely due to advances in early detection and treatment and is underscored by a survival rate of 88% at 5 years postdiagnosis for all stages of breast cancer. Although much progress has been made in combating the disease, women diagnosed with breast cancer endure multiple assaults to the body both from the disease and treatments. Surgical and adjuvant therapies are associated with complications and side effects that may lead to functional limitations, disability, and a poor quality of life. The Model of Disability and Disability Prevention provides a framework for addressing the challenges of the breast cancer trajectory. From pathology to disability, the model offers an approach to preventative and restorative interventions. Exercise is highlighted as an intervention that significantly affects the breast cancer experience at multiple points along the disablement continuum.
The breast remains the primary site of cancer in women and ranks second only to the lungs as the leading site of cancer deaths (American Cancer Society [ACS], 2006). Approximately 212,920 women will develop invasive breast cancer in 2006 and 40,970 will die of the disease. The current survival rate for all stages of breast cancer 5 years following diagnosis is 88% (ACS, 2006). Although breast cancer is a major health threat to women, 2.2 million have survived the disease (Ries et al., 2004) because of early detection efforts and improved treatment (Courneya, Mackey, & McKenzie, 2002).
Most women who are diagnosed with breast cancer undergo a multimodality approach in treating the disease (ACS, 2003). Typically, the primary treatment for Stage I, II, IIIA, and operable IIIC breast cancer is surgery (National Cancer Institute [NCI], 2004). Adjuvant therapy may include irradiation, chemotherapy, hormone therapy, or a combination of the three (ACS, 2003; ACS & National Comprehensive Cancer Network [NCCN], 2004). Although life-prolonging, these approaches, as well as the disease, are significant assaults to the body. Cancer survivors, in general, may experience sequelae, such as nausea and vomiting (Bender et al., 2002), hair loss (Batchelor, 2001), fatigue (Dimeo, 2001; Kattlove & Winn, 2003), depression (Aziz, 2002), poor body image (Box, Reul-Hirche, Bullock-Saxton, & Furnival, 2002; Kolden, et al., 2002; Satariano, Ragland, & DeLorenze, 1996), and pain (Lash & Silliman, 2000). Breast-cancer survivors address other challenges as well, such as decreased upper-body flexibility and strength (Box et al.; Kolden et al.; Satariano et al.), lymphedema (Brown, 2004; Miller, 2002; Pasket & Stark, 2000), weight gain (Holmes & Kroenke, 2004), and osteoporosis (Fogelman et al., 2003). Without rehabilitation, these impairments may lead to functional limitations and ultimately disabilities.
Conceptual Framework for Disability Prevention
The Model of Disability and Disability Prevention proposed by Nagi (1965) and modified by the Committee on a National Agenda for the Prevention of Disabilities (CNAPD; Pope & Tarlov, 1991) provides a framework for explaining the disablement process from pathology to disability and the potential for intervention along the continuum (see Figure 1). The CNAPD selected the Nagi model instead of the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) framework (World Health Organization, 1980) because of “internal inconsistencies and lack of clarity in the ICIDH concepts of disability and handicap” (Pope & Tarlov, p. 78). In addition, the term handicap was viewed by the committee as “approaching obsolescence” (p. 78). For the interdisciplinary breast cancer team, this model offers clarification of concepts that are often blurred in meaning and addresses a continuum of care. For example, disability is often used as if synonymous with functional limitation. However, this model effectively differentiates the two, thus, warranting different approaches to care.
Nagi (1965) proposed four major disablement concepts—pathology, impairment, functional limitation, and disability. He alleged that each concept could lead to the adjacent concept in a stepwise progression, bypass a concept, or affect a prior concept. The CNAPD (Pope & Tarlov, 1991) modified the model by adding two concepts—risk factors and quality of life (QOL). They purport that risk factors (i.e., biology, environment, and lifestyle) and QOL have a reciprocal relationship with the disablement concepts and may interact at any point along the continuum. Prevention efforts may occur at any point preceding disability and, if disability occurs, restoration of function or prevention of further complications can be instituted.
Defining and differentiating the closely related disablement concepts is helpful in understanding the role of preventative interventions. The first concept in the disablement process, pathology, is an activation of the body’s defenses (Nagi, 1965) involving cellular and tissue changes in response to “disease, trauma, congenital conditions, or other agents” (Pope & Tarlov, 1991, p. 79). Thus, it is an “interruption or interference of normal bodily processes or structures” (Pope & Tarlov, p. 79). Carcinogenesis is an example of this type of cellular change.
Impairment, the adjacent concept to pathology, is defined as “discrete loss or abnormality of mental, physiological, or biochemical function” (Pope & Tarlov, 1991, p. 80). Impairment includes, but is not limited to, paralysis, numbness, and loss or displacement of body parts. All pathologies lead to impairment, but not all impairments are associated with pathologies.
The third disablement concept proposed by Nagi (1965), functional limitation, includes “impairments set on the individual’s ability to perform the tasks and obligations of his usual roles and normal daily activities” (p. 102). Pope and Tarlov (1991) purport that impairment may result in a restriction or inability to perform an action or activity within the normal range. However, not all impairments lead to functional limitations, but all functional limitations are the result of impairments. Lymphedema and decreased range of motion and strength of the operative arm are two of the functional limitations that may result from breast cancer pathology and treatment (Rietman et al., 2003).
Disability is the manifestation of a physical or mental limitation within a social context (Pope & Tarlov, 1991). Experiencing functional limitation does not mean that an individual is disabled. Rather, disability results when the person with a functional limitation is restricted or hampered by societal or environmental factors when performing normal daily activities or tasks associated with his or her usual roles. Pathology, impairment, and functional limitation are based on characteristics of the individual, whereas, disability reflects factors external to the individual. Satariano and Deloerze (1996) found that 3 months following a breast cancer diagnosis, 84 of 296 (28%) of employed women were on extended medical leave associated with a decrease in upper-body strength, need for assistance with transportation, and work that requires physical activity. This indicates that a combination of societal expectations and lack of resources to promote adaptation to temporary or permanent functional limitation can be a major contributor to the development of disability.
As noted earlier, the CNAPD (Pope & Tarlov, 1991) modified Nagi’s (1965) conceptual framework through the addition of two concepts, risk factors and QOL. Risk factors associated with health-related conditions are biological, environmental, and behavioral in nature (Pope & Tarlov). Biological risks are those inherent to one’s bodily makeup such as genetic and metabolic factors associated with maturation. Environmental risks comprise social and physical factors. Social risks refer to factors such as attitudes and prejudices of a population. Physical risk factors refer to the structural layout of the environment. Finally, lifestyle or behavioral risks are those factors that are generally under one’s control and consist of the unhealthy habits or decisions one makes that are harmful to one’s health (Pope & Tarlov).
QOL, as proposed by Pope and Tarlov (1991), encompasses the physical and psychosocial factors that create a sense of “total well-being” (p. 89). Cella (1994) purports a broader conceptualization of QOL that is both multidimensional and subjective. Cella notes that because QOL is subjective it is “best measured from the patient’s perspective” (p. 186). However, because it is multidimensional, measurement of several domains such as functional ability and physical, social, and emotional well-being is beneficial for clinical and research purposes. Cox (2003) suggests that both qualitative and quantitative approaches be employed to measure QOL. A quantitative approach can provide initial data that serve as a basis for discussion between clinician and patient (Cox, 2003). As depicted in the model, QOL affects, and is affected by, all concepts along the disablement continuum.
Tertiary Prevention and Rehabilitation
The Model of Disability and Disability Prevention is helpful in elucidating the role of primary, secondary, and tertiary prevention. For example, interventions specific to primary prevention are implemented prior to the pathology. Secondary prevention includes early detection modalities as well as treatment of the pathology; thus, interventions occur at the point of pathology and impairment. Tertiary prevention is typically employed following the stabilization of the acute phase or following primary treatment of the pathology. Pope and Tarlov (1991) suggest that tertiary prevention strategies focus on arresting the progression of the condition and prevent or impede further impairment, functional limitation, and disability. Based on their perspective, tertiary prevention encompasses rehabilitation efforts that are primarily focused on restoring one’s function and capacity to perform societal roles. Thus, interventions focus on affecting functional limitations and preventing disability.
The current view of rehabilitation is often used as a synonym for tertiary prevention and is viewed as broader in scope than the perspective suggested by Pope and Tarlov (1991). Gerber, Augustine, McGarvey, and Pfalzer (2004) describe rehabilitation strategies as providing “patients an approach to care that is comprehensive throughout the trajectory of their disease and life stages” (p. 1405). Cancer rehabilitation is an example of this expanded scope and is defined by Watson (1990) as “a dynamic health-oriented process designed to promote maximum levels of functioning in individuals with cancer-related health problems” (p. 4). This approach to rehabilitation underscores the need for preventative intervention rather than with treating a functional limitation after it is apparent. For example, women who have had a modified radical mastectomy with axillary dissection may develop adhesive capsulitis, most commonly called “frozen shoulder.” Rather than intervening when the capsulitis or functional limitation occurs, preventative measures such as safe range of motion and strengthening exercises should be introduced at the point of impairment to prevent capsulitis from occurring. In reference to the model, all pathology involves impairment, thus, rehabilitative efforts are warranted after the pathology is diagnosed.
Exercise, Breast Cancer, and the Disability Prevention Model
The Model of Disability and Disability Prevention facilitates the conceptualization of a woman’s breast cancer journey and the role healthcare professionals play. The journey begins with the identification of risk factors for breast cancer, proceeds through diagnosis of the disease and impairment, navigates the sequelae that are associated with functional limitations and disability and is encapsulated by QOL.
A detailed discussion of interventions relevant to the entire breast cancer continuum is beyond the scope of this article; however, an intervention that affects all aspects of the model is physical activity or exercise.
Evidence supports the role of physical activity as a strategy for the primary prevention of breast cancer (Friedenreich & Orenstein, 2002). Gammon, John, and Britton (1998) conducted a critical review of epidemiological studies addressing recreational and occupational physical activity and the occurrence of breast cancer. Their review found an inverse relationship between levels of physical activity and risk of breast cancer. However, the mechanisms in which physical activity reduces breast cancer risk are not certain. Matthews et al. (2004) suggest a biologic mechanism in which physical activity may modify the negative effects of “increased estrogen exposure as a consequence of elevated adiposity” (p. 479) in postmenopausal women. This helps to elucidate the findings that obesity in postmenopausal women is associated with an increased risk for breast cancer (ACS, 2005).
The exact exercise frequency, intensity, and duration necessary to decrease breast cancer risk are not clear. McTiernan et al. (2003) found that for postmenopausal women, physical activity of longer duration without increased intensity is associated with reduced breast cancer risk. Based on an extensive literature review, Freidenreich and Orenstein (2002) found that prevention benefits may be achieved for some cancers by exercising at moderate intensity 30 min per day, 5 days per week. Further research is needed to determine the biologic mechanisms underlying the exercise-cancer relationship and the type of exercise program that most effectively decreases breast cancer risk.
Recent findings suggest (Holmes, Chen, Feskanich, Kroenke, & Colditz, 2005) that physical activity may also decrease mortality from breast cancer. The investigators found that women with breast cancer who walked 3–5 times per week at an average pace achieved the greatest benefit. However, randomized clinical trials are needed to establish exercise frequency, duration, and intensity and its effect on breast cancer survival.
Exercise and Functional Limitation
After a woman is diagnosed with breast cancer, surgery is often the primary treatment (ACS & NCCN, 2004). Based on tumor size and morphology, personal preference and medical issues, breast conserving surgery or a mastectomy with removal of axillary nodes are common surgical choices (ACS, 2005; Singletary, 2004). The goals of treatment are “local control, optimal lymph node staging with minimal-treatment related morbidity, good functional results, and breast preservation” (Rietman et al., 2003, p. 690). Adjuvant treatments are often irradiation, chemotherapy, and hormonal therapy. Both the surgical procedures and the adjuvant therapies have adverse effects and can lead to functional limitations (Kattlove & Winn, 2003).
Many post-operative complications are associated with the removal of axillary lymph nodes. Some degree of dissection is important because axillary lymph node status is still the most important determinant of breast cancer prognosis (Luini et al., 2005). A few of the adverse effects of axillary lymph node dissection (ALND) at 1 year are decreased range of motion, reduced grip strength, pain, stiffness, and edema (Hladiuk, Huchcroft, Temple, & Schnurr, 1992). Women also report numbness in the chest and axilla, fatigue, difficulty sleeping, and pulling in the arm or axilla (Shimozuma, Ganz, Petersen, & Hirji, 1999). Lash and Silliman (2000) found that upper-body dysfunction may occur shortly after treatment and resolve, reoccur, and persist for up to 21 months, or occur much later on the breast cancer trajectory. Lymphedema is often a late effect of treatment (Brown, 2004) and is associated not only with ALND, but even more so with irradiation of the axilla (Kattlove & Winn, 2003). This effect occurs when the transport of lymph fluid is interrupted and collects in the tissues of the extremity (Brown, 2004).
A new method used to determine axillary staging is the sentinel lymph node (SLN) biopsy. The underlying premise is that a negative SLN eliminates the need for an axillary lymph node dissection, thus decreasing post-operative arm morbidity (Rietman et al., 2003). However, one study (Rietman et al.) found no significant difference in short-term arm morbidity between women who had SLN and those who had a Level I through II ALND. Further research is needed to determine the long-term effects of the two approaches.
Breast cancer survivors also endure multiple effects from adjuvant therapies. Fatigue, skin reactions, and fibrosis leading to tightening of the chest muscles and skin are not uncommon with radiation therapy (Box, 1998). Ververs et al. (2001) found that breast cancer survivors who had irradiation of the axilla were at 3.57-fold higher risk for arm edema that prevented many from participating in leisure activities or sports. Chemotherapy is associated with nausea and vomiting, hair loss, immunosuppression, weight gain, menopausal symptoms, and cognitive impairment (Box, 1998; Kattlove & Winn, 2003). Hormonal therapy, such as Tamoxifen treatment, results in menopausal symptoms and increases the risk for endometrial cancer and venous thrombosis (Kattlove & Winn). Osteoporosis resulting in fractures is associated with an aromatase inhibitor called anastrozole (ATAC Trialists’ Group, 2005). Without appropriate interventions, many of these complications will become functional limitations and, in some cases, disabilities.
MacVicar and Winningham (1986), pioneers in the study of cancer and exercise, investigated the physical and psychological responses to a supervised exercise program of women who had breast cancer surgery and were undergoing chemotherapy. Of 10 subjects, 6 exercised 3 times a week for 10 weeks and 4 subjects were nonexercisers. Although a small sample, subjects in the exercise group exhibited greater improvement in functional capacity and mood states than the nonexercisers. More recently Mock et al. (2001) recruited 52 women undergoing radiation therapy or chemotherapy for breast cancer to participate in a home-based walking exercise program. Subjects who exercised a minimum of 90 min per week on 3 or more days reported significantly higher functional ability, QOL, less fatigue, and decreased emotional distress than less-active women.
The importance of an exercise program to improve upper-body range of motion and performance of functional tasks following breast cancer surgery is supported (Na et al., 1999; Wingate, Croghan, Natarajan, Michalek, & Jordan, 1989). However, no consensus exists on the type, frequency, intensity, and duration of exercise or when to initiate the exercises postoperatively. The development of seromas with early postoperative mobilization of the arm is a concern and was supported in a study conducted by Shamley, Barker, Simonite, and Beardshaw (2005). Contrary to their findings, Na et al. (1999) initiated a progressive exercise program postop day one and found no increase in postoperative complications. Controversy also exists regarding the institution of progressive resistive exercises following ALND due to the risk of lymphedema (Harris, et al., 2001). However, these restrictions as well as the arbitrary weight restrictions (e.g., do not lift heavy objects) imposed on breast cancer survivors are not supported by current findings (Harris & Niesen-Vertommen, 2000). Prospective research studies and, particularly, randomized clinical trials are necessary to determine the most efficacious exercise program following surgery for breast cancer.
The Model of Disability and Disability Prevention offers an approach for addressing the challenges unique to the breast cancer trajectory. Nurses, physical therapists, and physicians play a major role in the short- and long-term care of breast cancer survivors. Preventing functional limitation and promoting QOL requires effective rehabilitation measures. Exercise shows great promise for women prior to and following a breast cancer diagnosis. However, further research is warranted to determine the most efficacious exercise program.
About the Author
Beverly S. Reigle, PhD RN, is assistant professor at the University of Cincinnati College of Nursing. Please direct correspondence to her at 3110 Vine Street, Cincinnati, OH 45221-0038; firstname.lastname@example.org.
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