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August 2011, Supplement to Volume 15, Number 4
Mobility and Safety in the Multiple Myeloma Survivor: Survivorship Care Plan of the International Myeloma Foundation Nurse Leadership Board
Sandra I. Rome, RN, MN, AOCN®, Bonnie S. Jenkins, RN, Kathryn E. Lilleby, RN, and the International Myeloma Foundation Nurse Leadership Board
As in many other cancers, survivorship of multiple myeloma involves handling treatment, recovery from therapeutic interventions, the effects of the disease, and ongoing therapies. Although mobility challenges vary among survivors of multiple myeloma, these patients have an increased risk of impaired mobility because of side effects of therapy and the pathology of the disease, as well as other factors (e.g., increasing age). Health maintenance increasingly is becoming a part of the cancer control continuum, and nurses have the opportunity to help survivors of multiple myeloma optimize their functional mobility and safety, thereby preserving quality of life. The purpose of these practice recommendations is to provide the healthcare professional with information on mobility, fall risk, and planned activity as an integral part of the plan of care for patients with multiple myeloma. Tools for nurses and physicians for assessing and evaluating the newly diagnosed patient, the patient undergoing treatment, and the long-term survivor of multiple myeloma will be provided.
At a Glance
· As patients with multiple myeloma survive longer, they experience disease-related health issues, treatment-related side effects, and comorbid conditions that can decrease their functional mobility and safety.
· Nurses have the potential to improve the quality of life of patients with multiple myeloma by regularly monitoring laboratory and radiographic tests, assessing patients’ risk for falls and injury, and improving functional mobility by advocating safe activity and exercise programs.
· Practice recommendations have been developed to provide healthcare professionals with information on mobility, fall risk, and planned activity.
Multiple myeloma is a disease of the plasma cells found in the bone marrow and occurs most often in patients aged 60–70 years (Nau & Lewis, 2008). Among the signs and symptoms of multiple myeloma that affect mobility and safety, anemia and bone disease occur in as many as 90% of patients (Roodman, 2008). Almost all patients with multiple myeloma develop bone disease consisting of osteolytic bone lesions. At diagnosis and throughout treatment, these result in decreased mobility, pain, metabolic disturbances from bone loss, neurologic compromises, weakness, and fatigue. Lack of mobility and activity becomes a substantial hindrance to optimizing therapeutic interventions and may cause complications in the therapeutic setting, which in turn will have consequences for long-term prognosis (Roodman, 2008).
As with other individuals aged 65 years and older (regardless of health status), patients with multiple myeloma have particular risk factors related to falls. An estimated 33% of older adults fall each year, and the likelihood of falling increases as the patient ages; the actual number of older adults who fall and are not injured is unknown. The Centers for Disease Control and Prevention (CDC) estimated that, in 2008, about 16% of all U.S. adults in that age group fell at least once, and 31% of those who fell sustained an injury. Among older adults, falls are the leading cause of injury-related deaths (CDC, 2008, 2010). In patients with multiple myeloma, falls frequently lead to fractures, which often is the event leading to a diagnosis of multiple myeloma (Melton et al., 2004).
People with multiple myeloma are surviving longer because of newly available treatment options such as the novel agents bortezomib, lenalidomide, and thalidomide, with an increased survival benefit particularly noted in patients diagnosed in the past 5–10 years and those diagnosed at a younger age (Brenner, Gondos, & Pulte, 2009). Therefore, mobility, fall-risk assessment, and planned activity should form an integral part of the long-term care plan for patients with multiple myeloma.
Given the skeletal issues and risk of injury, long-term care planning for survivors of multiple myeloma should include scheduled assessments, a well-defined plan that includes evaluations for reducing symptoms and enhancing functional capacity, and appropriate interventions for improving overall health (Hacker, 2009; Knobf, Musanti, & Dorward, 2007). Healthcare providers for patients with multiple myeloma assess, prevent, and treat the acute and chronic problems of the disease and the treatment-associated issues. Nursing interventions are crucial in optimizing these actions by maintaining and restoring function. Physicians and nurses need to take a proactive role in assessing patients’ functional levels and fall risks, consult accordingly with physical and occupational therapists involved in patient care, and communicate with patients (see Figure 1). The positive aspects of having an activity plan are numerous. Nurses and physicians also should be aware of the serious sequelae of immobility and injury that may lead to the demise of the patient. Equally important is the need to appreciate the physical limitations resulting from the consequences of multiple myeloma and its treatment.
Evaluation of the patient’s baseline history and physical assessment should be performed. Determination of the extent of bone disease should precede prescribing an exercise program. Although a metastatic bone survey (complete skeletal x-radiogram) has been considered the gold standard for imaging myeloma bone disease, plain radiograms are insensitive and cannot be used to detect low levels of bone decalcification (Bartel et al., 2009; Roodman, 2008). Computed tomography (CT) scans, magnetic resonance imaging (MRI), and positron-emission tomography (PET) scanning are more sensitive for estimating bone involvement and indicate the need for referral to orthopedic specialists in selected patients (Roodman, 2008). Bone mineral density scans are beneficial in evaluating osteopenia at baseline and annually for guiding the use of bisphosphonates (Coleman, Coon, et al., 2003) (see Table 1). Laboratory abnormalities, comorbid conditions (e.g., cardiovascular disease, neuropathies, other neurologic issues, pain, gastrointestinal symptoms, problems with vision), and medications also should be reviewed regarding their effect on the patient’s function.
Because patients with multiple myeloma often have problems that may affect their mobility, their ability to function safely can change over time. For example, a patient may have a spinal lytic lesion successfully treated by vertebroplasty, but may have a new onset of peripheral neuropathy from chemotherapy (see Table 2). Patients also may experience physical changes related to treatment, such as peripheral neuropathy, muscle wasting, fatigue, gastrointestinal issues, and others (see Table 3). These, along with other patient factors, may interfere with daily functioning and mobility. Therefore, ongoing fall and current-function assessments as well as an updated exercise plan at every patient encounter all are crucial (Coon & Coleman, 2004a).
The rate of falls in patients with multiple myeloma has not been reported; however, these patients may be prone to several fall-risk factors as listed in Tables 1 and 2 (Ganz, Bao, Shekelle, & Rubenstein, 2007). Fall risk cannot necessarily be predicted based on a single factor. A research-based, reliable, sensitive, and practical assessment tool should be used to assess fall risk in any healthcare setting (Overcash, 2007; Perell et al., 2001). The Hendrich Fall Risk Model (Hendrich, Nyhuuis, Kippenbrock, & Soja, 1995; Perell et al., 2001), Morse Fall Scale (Morse, Morse, & Tylko, 1989; Perell et al., 2001), and the timed Get Up and Go test are examples of tools that can be used in the inpatient or outpatient settings (Lundin-Olsson, Nyberg, & Gustafson, 1998; Podsiadlo & Richardson, 1991; Shumway-Cook, Brauer, & Woollacott, 2000) (see Appendices A, B, and C).
Evidence-Based Support for Promoting Activity and Proper Nutrition
Many evidence-based studies support the benefits of physical activity and exercise on physical, psychological, and emotional health in cancer survivors. Along the care continuum, physical benefits include improved cardiorespiratory fitness, muscle strength, endurance, immune function, and weight management (Carlson, Speca, Faris, & Patel, 2007; Clark et al., 2007; Courneya & Friedenreich, 2007; Ingram & Visovsky, 2007; Oldervoll et al., 2006). Higher levels of vigor and relaxation have been observed with moderate stretching exercise, such as yoga (Carson et al., 2007; Culos-Reed, Carlson, Daroux, & Hately-Aldous, 2006). Adequate nutrition and exercise are highly recommended for cancer survivors (Wiseman, 2008). The supportive care literature has not focused comprehensively on these aspects of health in the context of patients with multiple myeloma.
Survivors who report more exercise during these periods report a higher quality of life (Jones et al., 2004). An adequate mobility program for survivors of multiple myeloma should be one component of the treatment of the disease and health maintenance and contribute to general overall well-being. A low percentage of survivors of multiple myeloma are exercising regularly either during active or off-treatment periods.
Exercise intervention studies in survivors of multiple myeloma who participate in exercise programs show that it can be done safely and may be effective for decreasing fatigue and mood disturbance as well as improving sleep (Coleman, Coon, et al., 2003). Patients with multiple myeloma undergoing aggressive treatment, such as a stem cell transplantation, can safely participate in an individualized strengthening and endurance exercise program (Coleman et al., 2008).
Promoting Safety Through Physical Activity
Planned physical activity should be part of an overall health program that includes exercise, nutrition, and weight management. Complementary therapies such as support groups and nutritional supplements also may be included (Doyle et al., 2006; Everett, 2008; Jones & Demark-Wahnefried, 2006). Patients with multiple myeloma may not have participated previously in physical activity; however, evidence of obesity and lack of physical activity as causes of multiple myeloma are not conclusive (Birmann, Giovannucci, Rosner, & Anderson, 2007). All assessments prior to an activity or exercise plan should include patient’s previous activities and exercise preferences, which may be unique and varied (Jones & Courneya, 2002).
Improvement in functional ability, strength, and balance clearly reduces the risk of falls and injury in those at highest risk (Doyle et al., 2006; Rubenstein & Josephson, 2006; Voukelatos, Cumming, Lord, & Rissel, 2007). Risk factors for falls and injury in older adults are multifactorial, and prevention warrants interventions tailored to the individual patient. Studies have demonstrated that strength and balance training is paramount in reducing the risk of falls and fall-related injuries (Kannus, Sievanen, Palvanen, Jarvinen, & Parkkari, 2005; Voukelatos et al., 2007).
For patients with mobility problems and a potential risk of falling, the following should be specifically addressed.
· Determine immediate needs for safety (e.g., hospital-fall precautions program, in-home assistance, use of assistive devices).
· Treat or manage the underlying disorder (e.g., neuropathy).
· Assess and adjust medications.
· Recommend an exercise program that includes training in gait and balance, and stretching.
· Assess and modify daily routines.
· Assess safety of home environment.
As with many types of cancer, multiple myeloma can be considered a chronic disease that often affects the patient’s and family’s routines and lifestyle. A patient may have been active previously, but now has been labeled as high risk for falling by the healthcare team and doesn’t want to adhere to restrictions such as calling for help or using a walker. A patient with bone disease compromising spinal stability or with the potential for fracture may be uncertain of appropriate activities. A sedentary individual may not understand the importance of exercise on bone health. Clinicians should recommend safe activities as part of the plan of care for every patient.
Safe mobility and physical activity programs should be tailored to the needs of individual patients. In any setting, the immediate need for patient safety (e.g., prevention of falling) should be the priority. For example, in an acute-care setting, the use of a walker or cane, verbal reminders to the patient to call for help, frequent rounding, and the use of bed-exit alarms all may be helpful in immediately reducing the risk of falling. The home environment should be assessed and modified to maximize safe mobility. Nursing staff should consider a home health assessment to provide recommendations on possible home modifications, such as rug placement, handrails, and grab bars. Consultation with a spine or orthopedic specialist to assess bone compromise and determine activity tolerance may be needed. The American College of Sports Medicine and the American Heart Association have published minimum recommendations for physical activity (see Table 4), which state that people with chronic conditions should be as physically active as their abilities and conditions allow. Exercise programs may need to be adapted for the individual survivor, and survivors should develop a regular physical activity plan with a health professional to manage risks and to take therapeutic needs into account (Haskell et al., 2007; Ingram & Visovsky, 2007; Schmitz et al., 2010).
Specifically prescribed physical therapy programs, whether performed in the hospital, at home, or as an outpatient, have the benefit of a licensed practitioner who has experience in working with patients with special medical considerations. The healthcare provider should bear in mind that while several studies show that many types of activity and exercise programs can safely be performed by patients with cancer, special consideration is required for a survivor of multiple myeloma, particularly in the presence of peripheral neuropathy or bone disease. For example, although yoga may allow participants to work at their own pace and incorporate gentle poses and stretching suitable for patients with functional limitations, particular poses may be contraindicated for specific patients, such as a balancing pose for a person with neuropathy (DiStasio, 2008). Activity recommendations should be carefully assessed for efficacy and safety for each patient (Cohen & Eisenberg, 2002).
Physical Activity Recommendations
Following a thorough physical, laboratory, and diagnostic assessment, general instructions and considerations tailored to the patient should be developed immediately. Before advocating an activity or exercise regimen, the patient’s personal motivation to participate (e.g., the belief that the exercise will help them) and factors such as social support should be considered as these may be important facilitators for exercise adherence. Flexibility and simplicity are essential when designing exercise programs for patients. Professional and family encouragement and support also are needed (Coleman, Hall-Barrow, Coon, & Stewart, 2003; Coon & Coleman, 2004a, 2004b; Jones et al., 2006). Figure 2 contains information on patient and family exercise education.
Recommendations for an exercise program should be developed from the healthcare team perspective prior to discussion with the patient and family. The healthcare team should comprise occupational and physical therapists, the physician, nurse practitioners, and nurses. An exercise prescription should consist of the four components of the FITT principle (American College of Sports Medicine, 2006).
· Frequency: the number of sessions per week
· Intensity: how hard the person is exercising
· Time: the duration of the exercise session
· Type: the activity mode
Before starting any program, the healthcare provider should ask certain questions to assist the patient, family, and caregiver in considering the patient’s specific needs and to evaluate potential programs and activities (DiStasio, 2008) (see Figure 3).
The three types of exercise categories are aerobic, resistance, and flexibility. The choice of exercise depends on the person’s goals, health status, exercise history, and multiple myeloma experience. Studies of patients with multiple myeloma have included an aerobic component, usually walking, plus strength resistance training using exercise stretch bands. Running or cycling must be done carefully to avoid a fall that could lead to severe complications (Coleman, Coon, et al., 2003). Table 5 contains a review of different types of exercises, the benefit of each, and examples.
Healthcare providers should offer encouragement to patients. They also need to consider physical and psychosocial limitations such as travel, individual motivation, and the patient’s health belief system. Involving friends and family members and having patients keep a log or diary of how they are feeling along with their activity level and how their goals are met helps foster accountability (Coon & Coleman, 2004b; Jones & Courneya, 2002; Jones et al., 2004, 2006; Maxwell, 2007).
Patients also need to be educated about when to modify or abstain from their exercise regimen (see Figure 4). For example, when patients are neutropenic (absolute neutrophil count of less than 1,000 x 109/L) or have a fever, they may continue to exercise but should avoid group participation; if they have low platelets, a greater concern for strenuous activity and maintaining security of balance should be emphasized. Patients with balance problems may need to use a chair or wall for balance for standing during yoga or tai chi. Patients must be cautioned to listen to their own bodies and abstain from activities that cause discomfort.
Ongoing Assessment and Readjustment
Ongoing assessment includes review of laboratory and diagnostic tests to determine the degree of anemia, fracture risk, and disease status. Assessing the patient’s risk of falling, nutrition and hydration status, and medications is important for promoting safe activity. Adequate management of comorbidities also can promote functional mobility (Everett, 2008; Kannus et al., 2005; Maxwell, 2007; Wisloff, Kvam, Hjorth, & Lenhoff, 2007). The clinician should assess the patient’s ability to adhere to an exercise regimen, bearing in mind that cancer rehabilitation seldom is linear. Survivors of multiple myeloma may have varied problems and symptoms over time, such as pain or neuropathies (Tariman, Love, McCullagh, Sandifer, & the International Myeloma Foundation Nurse Leadership Board, 2008). In addition, maintaining a weekly exercise log helps patients track the frequency, intensity, and duration of the exercises. Based on patients’ documented exercise performance, programs could be altered to best accommodate their physical functioning (i.e., if the patient is feeling very fatigued, the intensity of the exercises can be lowered accordingly).
The CDC has a multitude of resources to promote exercise and reduce the risk of falling. Printable color handouts and posters are available online from the CDC (www.cdc.gov/Home andRecreationalSafety/Falls/index-fs.html) and the American Cancer Society (www.cancer.org/Search/index?q=falls&all=1). Larger institutions may consider developing a specific cancer rehabilitation program or providing a list of local approved exercise and activity programs. A lending library of exercise books, CDs, or videotapes also may be helpful (Schwartz, 2004). In addition, the LIVESTRONG Foundation and the YMCA have partnered to provide exercise programs specifically designed for cancer survivors (see www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-the-YMCA).
Patients with multiple myeloma are surviving longer than ever before and have an increased risk for impaired mobility because of their disease, treatments, comorbidities, and age. Nurses, along with other members of the healthcare team, can help patients be accountable for improving their overall health behaviors, including their functional mobility and safety, by advocating for the use of appropriate activity and exercise programs. Assessments of laboratory and radiographic tests, risk of falls and injury, and functional mobility all should be done at baseline and with every patient encounter. Multiple myeloma disease- and treatment-related side effects and comorbid conditions should be addressed to maximize function and safety. A tailored program for each patient that includes appropriate physical activity, supportive medications, and dietary components should be implemented. Patients, family members, and caregivers should be instructed to tailor activities daily based on the patient’s health status and to share questions and concerns with the healthcare team. Nurses, along with other clinicians, patients, family members, and caregivers, have the opportunity to preserve and improve the quality of life of patients with multiple myeloma.
The authors gratefully acknowledge Brian G.M. Durie, MD, and Robert A. Kyle, MD, for critical review of the manuscript; Lynne Lederman, PhD, medical writer for the International Myeloma Foundation, for preparation of the manuscript; and Lakshmi Kamath, PhD, at ScienceFirst, LLC, Cedar Knolls, NJ, for assistance in preparation of the manuscript.
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Sandra I. Rome, RN, MN, AOCN®, is a clinical nurse specialist in the Blood and Marrow Transplant Program at Cedars-Sinai Medical Center in Los Angeles, CA; Bonnie S. Jenkins, RN, is the director of program coordination in the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences in Little Rock; and Kathryn E. Lilleby, RN, is a research nurse in the Department of Autologous Transplantation at Fred Hutchinson Cancer Research Center in Seattle, WA. The authors take full responsibility for the content of this article. Publication of this supplement was made possible through an unrestricted educational grant to the International Myeloma Foundation from Celgene Corp. and Millennium: The Takeda Oncology Company. The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the authors, planners, independent peer reviewers, or editorial staff. (Submitted February 2011. Revision submitted March 2011. Accepted for publication March 26, 2011.)