Adequacy of Evidence for Physical Activity Guidelines Development: Workshop Summary (2007)

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7 Physical Activity and Considerations for Persons with Disabilities This chapter focuses on the evidence of the benefits of physical ac- tivity for people with a broad range of disabilities. Introductory informa- tion is followed by coverage of physical activity related to seven conditions: spinal cord injury, cerebral palsy, multiple sclerosis, intellec- tual disabilities, stroke, heart disease, and cancer. The chapter ends with highlights from the group discussion. CONSIDERATIONS FOR PERSONS WITH DISABILITIES Presenter: James H. Rimmer The term disability has been defined in many ways. For this meeting, Dr. Rimmer proposed that the term be used to describe people who are generally excluded from studies of physical activity, such as persons with severe back pain, persons using assistive devices, persons with cog- nitive or sensory deficits, and persons having various comorbidities. This presentation included background information on disabilities in the United States, evidence of associations between physical activity and health outcomes for selected types of disability, and the proposed nature of physical activity guidelines for people with disabilities. Dr. Rimmer took the position that this population group merits special attention be- cause people with disabilities were not addressed in Physical Activity and Health: A Report of the Surgeon General (DHHS, 1996). 125 

126 PHYSICAL ACTIVITY WORKSHOP Background In the United States, approximately 54 million people report some type of disability. Compared with people without disabilities, more peo- ple with disabilities report poor health conditions, and they report more conditions that are chronic as well (as tracked through the 2001–2003 Behavioral Risk Factor Surveillance System [BRFSS]). Persons with disabilities also may experience secondary conditions that may be a di- rect or indirect consequence of having the disability. Examples of such secondary conditions are pain, fatigue, cardiovascular deconditioning, depression, social isolation, and obesity. The direct medical costs for dis- ability are estimated to be $300 billion per year (IOM, 1997). It is inappropriate to equate disability with poor health: disability and disease are different concepts. Because data seldom are tracked over time, it is not known to what extent certain disabilities increase the risk of a chronic health condition such as obesity. The prevalence rates of overweight, obesity, and extreme obesity were evaluated among 306 adults (108 men, 198 women) with physical and cognitive disabilities. These rates were compared to the respective prevalence rates among adults in the 1999–2000 National Health and Nutrition Examination Sur- vey (Rimmer and Wang, 2005). Results indicated that the rates of over- weight, obesity, and extreme obesity were much higher for persons with disabilities than for the general population. Extreme obesity (BMI > 40 kg/m2) was nearly four times higher among people with disabilities than in the general population. Persons with a disability tend to be less fit than the general popula- tion. For example, in nine recent studies that measured VO2 peak in sub- jects with stroke, reported values were significantly lower than typical values for a population of non-disabled adults of similar age and sex (Chu et al., 2004; Duncan et al., 2003; Fujitani et al., 1999; Kelly et al., 2003; MacKay-Lyons and Makrides, 2002; Macko et al., 2001; Potempa et al., 1995; Rimmer et al., 2000; Rimmer et al., submitted). Compared with healthy individuals, more persons with disabilities report that they are physically inactive, as tracked through BRFSS. The proportion of smokers is higher among those with disabilities as well. 

127 PERSONS WITH DISABILITIES Emerging Evidence on Physical Activity and Disability When reviewing evidence concerning effects of physical activity among disabled persons, Dr. Rimmer focused on five different disabili- ties: spinal cord injuries, cerebral palsy, multiple sclerosis, intellectual disabilities, and stroke. Effects of Exercise on Persons with Spinal Cord Injury Muscle strength If there is not complete paralysis (for example, with incomplete spinal cord injury), exercise training generally can produce significant gains in strength in paretic muscles through increased motor unit recruitment (Hicks et al., 2003). In people with complete spinal cord injury, intact muscle groups can be strengthened to be similar to the re- spective muscles in the general population. Psychosocial Randomized controlled trials on the psychosocial effects of exercise in spinal cord injury show improvements in depression and lower levels of stress (Ginis et al., 2003; Hicks et al., 2003; Latimer et al., 2004), and they show lower levels of pain (Curtis et al., 1999; Hicks et al., 2003; Latimer et al., 2004; Martin Ginis et al., 2003). Ditor and colleagues (2003) found a strong positive effect of exercise on perceived quality of life, but it declined precipitously upon removal of the treat- ment, and the pain and stress scores rose substantially. Effects of Exercise in Persons with Cerebral Palsy Three relatively recent studies show that resistance training 2 to 3 days per week for 6 to 10 weeks leads to significant improvement in the strength of persons with cerebral palsy (Andersson et al., 2003; Dodd et al., 2002; Taylor et al., 2004). In a systematic review of the effectiveness of strength training for people with cerebral palsy, Dodd et al. (2002) found only one randomized controlled trial. Eight of the 10 empirical studies reported moderate increases in strength, 2 studies reported im- provement in general activity, and 1 study reported improvements in self-perception. Notably, in all the studies, the improvements occurred without an increase in spasticity or adverse events. 

128 PHYSICAL ACTIVITY WORKSHOP Effects of Exercise in Persons with Multiple Sclerosis Of four randomized controlled trials on the effects of exercise in per- sons with multiple sclerosis, one (Petajan et al., 1996) found significant increases in cardiovascular endurance, strength, body composition, blood lipids, psychosocial parameters, and fatigue. The other three studies (Mostert and Kesselring, 2002; Oken et al., 2004; Surakka et al., 2004) had less favorable findings. All but Mostert and Kesselring (2002), how- ever, found significant improvements in fatigue with exercise. Effects of Exercise in Persons with Intellectual Disabilities General Seven of 64 reviewed studies on exercise in persons with intel- lectual disabilities involved a randomized controlled trial, and 15 in- volved a controlled (nonrandomized) trial or a single group pre- and post-test. The remaining studies were descriptive. The randomized con- trolled trials found significant increases in VO2 peak and in duration, workload, and/or distance. Little or no improvement in body composition was found. Two of the studies showed significant increases in strength, decreased perceived barriers to participation in exercise, and increased outcome expectations in self-efficacy and life satisfaction. One study showed increased walking speed among older persons with intellectual disability. Down Syndrome In a systematic review of the outcomes of cardiovascu- lar exercise programs for persons with Down syndrome (Dodd and Shields, 2005), the findings generally favored treatment. In a quasi- experimental exercise training study involving 14 adolescents (10 ex- perimental and 4 controls) with Down syndrome, Millar et al. (1993) found no change in VO2 peak but did report improvements in endurance and physical work capacity. Effects of Exercise in Persons with Stroke Studies of the effects of exercise in persons with stroke consistently have demonstrated improvements in VO2 peak (Chu et al., 2004; Duncan et al., 2003; Fujitani et al., 1999; Macko et al., 2005; Potempa et al., 1995; Rimmer et al., 2000). As noted later by Dr. Macko, however, the 

129 PERSONS WITH DISABILITIES fractional utilization of maximal aerobic capacity (%VO2max) may be a more important measure, indicating increased economy of movement—a very important outcome for people affected by stroke. Rimmer’s group examined dose–response effects of exercise in stroke participants. They tested different intensity levels and different durations of exercise and compared the findings with those of the usual care group, which had improvement in gait as the focus of care. The re- sults are summarized in Table 7-1. Outcomes differed based on the inten- sity or duration of the exercise. The reasons for differences in health outcomes are not yet well understood. TABLE 7-1 Dose–Response Effects of Aerobic Exercise in Stroke Effect Intensity Duration Usual Care Body mass index NE NE Peak VO2a NE Total cholesterol NE NE HDL NE NE NE LDL NE NE Triglycerides Gait speed (m/s) Barthel Function Indexb NE NE NE Fatigue Severity Scale NE NOTES: NE = < 5 percent change; one arrow ( ) represents a 5–10 percent change in the direction shown by the arrow; two arrows ( ) represents greater than a 10 percent change in the direction shown by the arrows; HDL = high density lipoprotein; LDL = low density lipoprotein; m/s = meters per second; a VO2 is a measure of oxygen consumption. b Barthel Function Index is a general measure of performance in activities of daily living. SOURCE: Adapted from Rimmer et al. (2007) (unpublished data). 

130 PHYSICAL ACTIVITY WORKSHOP Nature of Physical Activity Recommendations for People with Disabilities Appropriate Exclusion Criteria The development of appropriate exclusion criteria is a valuable ap- proach to help ensure that exercise is safe for a person with a disability. Dr. Rimmer’s group identified the exclusion criteria used in seven stud- ies of persons with stroke in which no major adverse events were re- ported and noted that careful monitoring is needed. With younger, less disabled groups, risks associated with exercise appear to be typical of the general population. Individualized, Function-Based Guidelines Because of variances in the data for the frequency, intensity, and time of physical activity for people with disabilities, Dr. Rimmer ex- pressed that guidelines should be individualized and based on health and function instead of disability. The International Classification of Func- tioning Disability and Health (WHO, 2001) provides a useful model for developing individualized exercise protocols. This model considers body functions and structures, activities, and participation in general life ac- tivities. It also considers environmental factors such as accessibility and personal factors such as motivational level or depression. The National Center on Physical Activity and Disability (www.ncpad.org) has devel- oped an instrument to assess an exercise facility to determine what changes would meet the needs of people with disabilities. Concluding Remarks Dr. Rimmer emphasized that appropriate physical activity is safe, ef- fective, and very important for people with disabilities. Current data show improvements in oxygen capacity (VO2), muscular strength, pain (including wheelchair user’s shoulder pain), stress, quality of life, physi- cal function, body composition, blood lipids, gait speed, and fatigue. For safety and effectiveness, physical activity guidelines need to be individu- alized and based on health and function. Moreover, efforts are needed to provide more accessible facilities and programs in the community so that 

131 PERSONS WITH DISABILITIES people with disabilities can engage in physical activities to the extent recommended. In addition, Dr. Rimmer called for a more scientific approach to ad- dressing specific secondary conditions—an approach that includes look- ing at specific doses of exercise related to effects on pain, fatigue, deconditioning, and obesity. DISCUSSION Special Considerations for Persons with Heart Disease Discussant: Peter H. Brubaker Background Approximately 60 million Americans have heart disease, which is the number one cause of death of U.S. men and women. More than 1 million Americans have a myocardial infarction each year, and about one-third of these are fatal. In addition, approximately 1 million Ameri- cans undergo cardiovascular operations and procedures each year (AHA 2005). Heart failure, largely a disease of the elderly, is a major and growing public health problem in the United States. Approximately 5 million Americans have this condition, and the disease is very costly to manage. Exercise and the Secondary Prevention of Heart Disease The evidence clearly points to exercise as an effective intervention for the secondary prevention of heart disease. Taylor and colleagues (2004), in a review of 48 randomized controlled trials of exercise training and 8,940 patients, reported the following benefits of 30- to 40-minute moderate-intensity endurance exercise performed three to four times per week over about 2.5 years: • Twenty percent reduction in all-cause mortality and 26 percent reduction in cardiac mortality • Improvements in physical function, blood lipids, systolic blood pressure, and selected psychosocial variables 

132 PHYSICAL ACTIVITY WORKSHOP • Improvements in fibrinolysis, thrombocyte aggregation, endothe- lial function, and other mechanisms of benefit Benefits of Endurance Exercise Training in Systolic Heart Failure Walking or cycling three to five times per week at 40 to 80 percent of peak VO2 for 8 to 24 weeks has been shown to decrease some symp- toms of heart failure and improve exercise tolerance, ventilation, quality of life, and many other markers of health (Pina et al., 2003). Closely su- pervised endurance exercise has not been shown to have adverse effects in this population. One small study showed that exercise twice weekly for 14 months reduced hospitalization and death (Bellardinelli et al., 1999). Similarly, the ExTraMATCH meta-analysis of persons with sys- tolic heart failure (Piepoli et al., 2004) found that those who participate in an exercise training intervention had a significantly lower risk of dy- ing after about 2 years. Concluding Remarks Data that are more definitive will be forthcoming. The large multi- center Heart Failure Action study (an ongoing study) is expected to in- clude more than 2,000 patients, and it will examine the impact of exercise training on heart failure, morbidity, and mortality. Some results are anticipated by 2008. Exercise Models in Persons with Disability from Stroke Discussant: Richard F. Macko1 Rationale for Physical Activity Metabolic The metabolic rationale for exercise in the chronic phases of stroke relates to body composition and tissue-level abnormalities. Every stroke patient has hemiparetic muscle atrophy, and strength is related, in part, to the cross-sectional area of the muscle. The quality of the affected 1 Dr. Macko expressed appreciation to study participants with chronic stroke from Maryland and Tuscany. 

133 PERSONS WITH DISABILITIES muscle also is abnormal and contributes to insulin resistance (Ivey et al., 2006). Dr. Macko estimated that, because of body composition and tissue abnormalities, 80 percent of persons who have had a stroke are in a pre- diabetic state or have type 2 diabetes. Data from the Dutch Transient Ischemic Attack Trial (Vermeer et al., 2006) indicate that impaired glu- cose tolerance and type 2 diabetes mellitus predict a two- to three-fold increase in risk for a recurrent stroke. Motor learning Studies have shown that treadmill training with task repetition and progression can have motor benefits: improved interlimb stance:swing ratio (Harris-Love et al., 2001), improved timing quadri- ceps activation (Harris-Love et al., 2004) (which means that the muscles are responding), and increased corticospinal signal strength to the paretic leg (Forrester et al., 2006) (which means that there is a short-term motor adaptation). Evidence of Benefits from Controlled Trials A randomized controlled trial of 6 months of treadmill training in persons with chronic hemiparetic stroke demonstrated significant im- provements in VO2 peak and walking speed and a decrease in the energy cost of walking (Macko et al., 2005). The combination may improve one’s ability to perform activities of daily living. Notably, Luft (2005) has shown regions of increased brain activation associated with 6 months of treadmill training. The trial of treadmill training also was shown to reduce the insulin-glucose response to about the same extent as would be expected in an exercise program for persons not affected by stroke (Macko et al., 2005). The set of beneficial changes occurred even many years after the occurrence of the stroke. This is a new area of study with only one small randomized clinical trial published. Currently, a pilot study of a community-based adaptive physical activity program for chronic stroke is being conducted in Tus- cany. The emphasis of this relatively low-cost program is on motor learn- ing for mobility, aerobic training, and socialization. Initial findings are promising in that the program appears to improve function and quality of life and to reduce disability to a clinically meaningful degree. 

134 PHYSICAL ACTIVITY WORKSHOP Concluding Remarks Dr. Macko summarized the strength of the evidence concerning structured physical activity for persons with stroke as follows: • Strong evidence of improvement in peak cardiorespiratory and muscular fitness • Moderate evidence of improvements in metabolic health, walk- ing function, and bone density • Preliminary evidence of improvement in balance, activities of daily living, quality of life, and mood Dose–intensity and mechanistic studies would provide information needed to optimize the treatment. Community studies with longitudinal health outcomes are needed. Evidence on the Health Outcomes of Physical Activity in Cancer Survivors Discussant: Kerry S. Courneya Background In the United States, approximately 1.4 million persons are diag- nosed with cancer each year. Because of improved survival rates, cancer survivors comprise a growing subpopulation. Currently, there are about 10 million cancer survivors living in the United States. Both quality of life and survival are important to this group. During treatments, physical activity-related health outcomes of inter- est include physical fitness and body composition, physical functioning (especially considering the high proportion of older persons affected by cancer), and acute symptoms such as fatigue, pain, nausea, constipation, sleep problems, neuropathies, depression, anxiety, and cognition. Also of interest is the extent to which physical activity or physical fitness may affect treatment decisions, the ability to withstand and complete intensive treatments, and treatment efficacy. Post-treatment, physical activity- related health outcomes of interest may include chronic symptoms, late- appearing effects (e.g., loss of bone mass, cardiomyopathies, fat gain), recurrence, and mortality. 

135 PERSONS WITH DISABILITIES Conclusions from Recent Systematic Reviews Over a 3-year period, seven systematic reviews have been published concerning physical activity and cancer outcomes (Conn et al., 2006; Douglas, 2005; Galvao and Newton, 2005; Knols et al., 2005; McNeely et al., 2006; Schmitz et al., 2005; Stevinson et al., 2004). These reviews cover about 30 controlled trials (not all of which were randomized). Dr. Courneya summarized the findings as follows: Physical activity and physical functioning/quality of life outcomes Physical activity improves fitness, body composition, physical function- ing, fatigue, and self-esteem of persons affected by cancer. It does not appear to improve body weight, mood, and emotional well-being. Find- ings appear stronger in the post-treatment setting than during the cancer treatment. Findings are strongest for breast cancer survivors, the popula- tion in which the bulk of research has been conducted. Physical activity and clinical cancer outcomes It is unknown if physi- cal activity influences treatment decisions, efficacy, or completion rates for persons with cancer. Physical activity has been shown to improve biomarkers such as immune factors and insulin-like growth factors. Sev- eral recent studies, including two on colorectal cancer, indicate that a higher level of physical activity after diagnosis is associated with a lower recurrence rate and lower overall mortality. Concluding Remarks The methodological quality of the studies of physical activity in can- cer survivors is modest but improving. Many cancer survivor groups re- main unstudied, and insufficient data are available on many outcomes. Very few data are available on resistance exercise or the optimal exercise prescription for any outcome. No randomized controlled trials have ad- dressed physical activity and cancer recurrence and/or mortality. 

136 PHYSICAL ACTIVITY WORKSHOP Group Discussion Moderator: Gregory W. Heath Among the points raised during the discussion period were the following: • Data are available on benefits of physical activity related to a number of prevalent chronic conditions that were not covered during the workshop, including peripheral arterial disease, kid- ney transplantation, and pulmonary disease. • The approach to a physical activity guidelines process that is in- tended for people with disabilities, as well as the “general popu- lation,” will be a challenge; but it is important because people with disabilities are a part of the fabric of the United States. A guideline may be viewed as a general recommendation as to what should be done, and a prescription as the specifics of how to do it. One might consider the approach used in the Dietary Guidelines for Americans 2005, in which adaptations are pro- vided for specific situations or conditions. Consideration also could be given to Canada’s model of separate physical activity guidelines for older adults, especially since the proportion of disability is high among older persons. In developing physical activity guidelines, suitable representation of the disability com- munity would be useful. • Achieving adherence to physical activity interventions has posed a considerable challenge in the United States. In Italy, a socially reinforced community program for persons affected by stroke has achieved a high degree of participation for the past 2 years. The use of behavioral strategies to reinforce longitudinal behav- ior is promising. REFERENCES AHA (American Heart Association). 2005. Heart and Stroke Statistics— Update. [Online]. Available: http://www.americanheart.org/ [accessed De- cember 18, 2006]. Andersson C, Grooten W, Hellsten M, Kaping K, Mattsson E. 2003. Adults with cerebral palsy: Walking ability after progressive strength training. Dev Med Child Neurol 45(4):220–228. 

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