Health care for people with disability is not commonly discussed in health education, particularly in medical education, despite the increasing prevalence of people with disability within the United States. Clinicians have reported discomfort in managing the health of people with disability,¹ and people with disability often report negative experiences with their health care because of the practitioners’ lack of knowledge.² There are clear health and health care disparities noted when comparing the care people with and without disability receive.^3,4 This is especially true for women with disability.^5,6,7 In general, disability is associated with obesity, and women with disability represent a large proportion of those with obesity and disability.

This chapter focuses on obesity and women with disability by providing definitions and background about the scope of the problem, presenting knowledge about nutrition and exercise or physical activity needs of women with disability, describing outcomes from weight management programs and interventions, and posing recommendations for practice. It is hoped that practitioners will better appreciate the needs and issues of women with disability as they relate to healthy weight management.

Definitions

Disability holds many meanings for professionals and consumers alike. Most people identify disability by diagnosis: cerebral palsy, spinal cord injury (SCI), multiple sclerosis, macular degeneration, or rheumatoid arthritis. Disability actually describes the mismatch between an impairment (e.g., loss of function of one side of the body due to a stroke or hemiparesis) and the environment (e.g., need to climb 5 steps to access a medical appointment); changing the environment with a ramp decreases the “disability” by allowing more independence or access. The World Health Organization has successfully promoted identifying disability by function: problems with mobility, self-care, cognition, vision/hearing, and living independently.⁸ There is also often reference to activities of daily living (ADL), such as bathing and dressing, instrumental activities of daily living (IADL), such as shopping and driving, and employment or ability/limitations to work when discussing disability.

The US surveys (self- or family report) are increasingly using 6 functional disability characteristics (i.e., mobility, self-care, vision, cognition, independent living) to identify disability; however there is no etiology given for that specific disability of limitation. Thus, disability statistics in the United States identify limitations for any reason, including aging, injury, mental health, chronic diseases, and other defined conditions. A current review of national disability surveys noted four survey types (national household surveys; surveys of health, disability, aging, and long-term care; surveys of youth, education, and transition; and other surveys), for a total of 40 surveys that capture some elements of disability.⁹ Data can be compared among surveys because of sampling, weighting, and other analyses that differ; some surveys have been updated or modified and cannot be compared to previous years. There are few registries (inclusive of all or most people who carry a specific diagnosis) supported in the United States, and some represent rare diseases. Typically, the more common disability diagnoses (e.g., stroke, cerebral palsy, SCI, traumatic brain injury) are not represented.

Epidemiology

Most recent disability statistics (self-reported functional limitations) note that 1 in 5 adult Americans (22.2% or 53,316,677 persons) report some type of functional disability, be it limitations in vision, cognition, mobility, or self-care or ability to live independently.¹⁰ Women reported a higher prevalence of disability (24.4%) than men (19.8% disability in general or within the 5 categories increased with increasing age). Mobility limitation or physical disability is most frequently reported, followed by cognitive disability. These latest statistics are the results of a self-report survey (Behavior Risk Factor Surveillance System or BRFSS) and do not specify reasons for disability, as is true for most US national surveys.

Analyses of survey data showed that people with disability have a high rate of overweight and obesity,¹¹ and the association for women is higher.¹² However, there is no ability to determine cause and effect: Is obesity the cause of the disability, or is there actually a direct association with a specific type of disability? The prevalence of obesity in disability may vary by disability type or medical condition. People with intellectual disability (ID) do appear to have a higher risk for overweight or obesity; specifically, women with ID appear to be at even more risk.^13,14 Diabetes tends to predispose to obesity.¹⁵ Men and women with either mental health or physical disabilities appear to have a higher risk for obesity.⁸ However “disability” is defined, women appear to show increasing disability with age and obesity.¹⁰

People with disability consistently have a higher rate of poverty than those without disability.¹⁶ Barriers to changing that status include lack of accessible housing and transportation, access to education, and prejudices; all items affected by these barriers are needed to maintain health and a healthy weight. Poverty can be associated with unhealthy weight, both overweight and malnutrition. For people with disability and obesity/overweight, there is a significantly greater health care utilization and cost compared to those without disability.¹⁷

Measurement of Healthy Weight

An area that is receiving increasing attention is how obesity is measured or defined in disability. As seen in previous chapters, body mass index (BMI) commonly quantifies obesity. However, BMI initially was developed to identify sedentary behavior; because of the ease in administering this measurement technique, it has now become the standard by which we define obesity. However, BMI requires accurate weight and height measurement, both of which may not be possible for women with mobility limitations. Accurate weights for women using wheelchairs require an accessible scale. Accurate height measurement for women with contractures or amputation of both lower limbs may not be possible. A weight adjusted for limb loss should be the weight of concern, not the actual weight. Use of BMI as the standard does not take into account metabolic changes seen in many disability types or the acute or chronic muscle wasting or premature sarcopenia seen in people with long-term disability.¹⁸

Body composition and percentage body fat are the keys to determining healthy weight versus overweight and obesity. Typical measures used in health care to assess the presence of obesity, such as standard weights or BMI, are therefore mere proxies for the actual determination of healthy weight. While these typical measures may be appropriate in the general population, they may not be suitable for many disability types because of muscle wasting, fatty replacement, metabolic differences, or limb loss. Body composition and healthy weight status has been well studied in people with SCI. Those with SCI have higher body fat mass than controls for the same BMI,¹⁹ and waist circumference (WC) underestimates abdominal (visceral) fat.²⁰

In-depth assessment of visceral and subcutaneous fat is likely of more importance in disability than in the general population. Numerous studies reported limitations in standard measures for obesity in the population of people with disability. Measurements that are practical and have shown promise for use in some disability populations are WC and waist-to-hip ratio (WHR). Skinfold thickness and bioelectrical impedance analysis (BIA) have provided more in-depth understanding of body composition in disability populations and can be done in clinical settings. BMI may be accurate for people with ID; WHR has been shown to be a strong predictor of cardiometabolic risks for adults with cerebral palsy.²¹

However, none of these techniques has been standardized for disability types. The Amputee Coalition of America has developed a calculation to assist with determining weight status, although it has not been validated against body composition measures.²² Research studies consider dual-energy x-ray absorptiometry (DEXA), hydrometry, and magnetic resonance imaging (MRI) to be accurate methods to assess body fat mass in any population; however, they are too expensive, time consuming, and impractical for clinical use.

Understanding that healthy weight in most types of disability links to body composition rather than to actual weight measurement or BMI is important. As well, it is important to understand that people with disability may have additional atypical problems with weight loss. Although weight loss in people with disability, especially fat mass loss, is associated with improved mobility,²³ weight loss must be carefully monitored to avoid worsening lean mass content and bone mineral loss, which may lead to malnourishment and therefore an aggravation of disability, especially in an elderly population.²⁴ Weight itself may not be the best primary outcome measure to evaluate success in weight management programs, but rather decrease in body fat, increase in muscle mass, improvement in mobility,²⁵ or decrease in inflammatory markers that accompany metabolic syndrome. There is no clear guidance for best practices; however, serial and accurate measures using the best and most practical method should be considered. It has been demonstrated that BMI does not accurately identify healthy weight in many types of disability.²⁶

Barriers to Access/Participation in Health Promotion Activities

There are many public health programs designed to engage the public in weight loss or maintenance activities. However, accessibility for people with disability is often not considered. This is true for participation not only in weight maintenance programs but also in other forms of public health programs for women with disability, such as cancer screening.^6,7,27 There are two common reasons for limited participation: attitudinal and environmental. All too often, clinicians do not consider discussion of or referral for health promotion programs, including weight management. It is important for clinicians to understand that people with disability have a different perception of health than the general population; therefore, they may be less likely to ask questions about health-promoting behaviors.²⁸ The clinician’s negative attitude is difficult to overcome and usually relates to the clinician’s training experiences and previous patient encounters.

Environmental concerns include financial or insurance support, transportation to events, social supports, universal design to allow entry to facilities, sensory adjustments (e.g., large print or braille, sign language or interpreter), and modifications of activities needed for those with focal or generalized weakness, limited range of motion, use of wheelchairs and other equipment, and limited cognitive ability.^29,30 The Americans With Disability Act provides guidance for accessibility.³¹ Inaccessible facilities, lack of knowledge about modifications to meet specific needs, poor attitudes, and unfriendly environments often create insurmountable barriers to participation for many people with disability. Besides the barriers noted, there are ways to promote weight management for people with disability that begin with engaging women with disability in discussions and decisions about their health (see Table 5-1).

People with disability face many barriers to access healthy foods that help in weight management, because of both disability and socioeconomic status^32,33 (see Table 5-2). Both urban and suburban neighborhoods have limited environmental accessibility and availability of affordable foods.³⁴ In addition to having the needed resources, people with disability may have problems with swallowing or chewing foods, further limiting options of healthy and affordable foods.³⁵ Medication use may also interfere with healthy food choices; medications may promote weight gain, stimulate appetite, or have other side effects that otherwise limit nutrition. Poor fruit and vegetable intake can be associated with ADL, IADL, and lower extremity impairments,³⁶ and decrease in the intake of calcium, vitamin D, magnesium, and phosphorus is associated with decreased physical performance in elderly men and women.³⁷ In a prospective observational study of 2160 multiethnic women aged 42–52 years, Tomey et al.³⁸ observed that higher cholesterol, fat, and saturated fat intake increased the likelihood of physical limitation, and that lower intake of fruits, vegetables, and fibers was associated with reports of higher functional limitation. The use of supplements may improve this scenario. Women with disability tend to have higher odds of using dietary supplements, although increase in BMI does not appear to be associated with their use.³⁹

People with disability have lower fat free mass and bone mineral content and higher fat mass than those without disability.⁴⁰ While this is typically attributed to a lower level of physical activity,⁴¹ dietary imbalance (e.g., excessive intake of dietary fatty acid and simple carbohydrates) has also been implicated.⁴⁰ Increase in protein intake may be beneficial to maintain muscle mass during planned weight loss.⁴³

Exercise and physical activity are important for people with and without disability to maintain health and function. People with disability can participate in many levels of exercise and can benefit from aerobic and anaerobic exercise. Improving and maintaining function is certainly important for people with many types of disability and functional limitations. Of course, there may be a need for modifications to exercise. Many exercises can be modified for weakness and contracture, and equipment can be adjusted for use. People with disability, their health care providers, and others in their support systems often assume that engaging in routine activities, especially those activities that require significant work, are “exercise.” However, maintaining typical daily activities is not exercise. Therefore, education about the need for and safety of exercise is important and required before there may be any consideration of participating in an exercise program. Many people with disability starting an exercise program often report fatigue with exercise, and this can be attributed to both the disability and previous sedentary lifestyles. Inactivity has been reported to be a major contributing factor to weight gain and deteriorating aerobic capacity, muscular fitness, and independence for people with disability.⁴⁴

People with disability who have never exercised will be at a low level of performance with the additional challenge and consequently need guidance about starting an activity or exercise program. Therefore, providers and clinicians must be aware of the benefits of exercise for people with disability, as well as the possible complications. Osteoporosis is a risk for fracture, and aggressive or assisted exercise (e.g., strenuous weight lifting or use of functional electrical stimulation or robotics) should be used with caution and initially under supervision. Lower motor neuron injury weakness will have only a limited benefit from strengthening exercises, and aggressive exercise may increase weakness. Some disability types are progressive or not stable, and understanding the variability is important. Fitness practitioners with more education about disability, who hold various professional degrees related to physical activity and fitness, and who have had experience with diverse populations demonstrate more competence in directing those types of programs.⁴⁵

Overview

People with disability have increased challenges to participating in organized weight control programs. They are at higher risk for poverty⁴⁶ and have less access to weight loss programs,⁴⁷ health clubs, accessible equipment for people with physical limitations,^30,48 affordable transportation,⁴⁹ or other social supports.⁵⁰ The common complaints of pain, fatigue, and weakness⁵¹ often prevent them from participating or impede clinicians from making a referral for weight management. However, weight loss programs for people with many disability types have been shown to be feasible and efficacious, although usually through small or uncontrolled studies.⁵² As in most programs that study weight management, the outcomes reported are only over limited time frames.

The 2013 Guideline for Managing Overweight and Obesity in Adults^53,54,55 summarizes the literature based on 5 questions. When considering people with disability, the answers to these questions may not be the same as for the general population.

1. 
   

   Which person with disability needs to lose weight?

   
   

   As noted, people with disability are at risk for weight gain for a multiplicity of reasons. The typical sedentary lifestyle may be directly related to the disability or may have been chosen. Underlying metabolic issues or sarcopenia must be suspected or recognized by the clinician. As has been noted, use of BMI does not adequately identify healthy weight status for most people with disability. However, serial measures of some marker or change in function or fit of equipment should initiate consideration for further evaluation and initiating a weight loss program. Monitoring a marker serially during the weight reduction program is important, although percentage body fat should be the ultimate target.⁵⁶ Health-related fitness or functional status markers may also be used. There are no known differences between men and women with disability in determining candidates for weight loss programs.

   
   
2. 
   

   For individuals with disability who can benefit from weight loss, what is the optimum level of weight loss?

   
   

   Improved cardiovascular health is an ultimate goal of weight loss. This would hold true for people with and without disability.⁵⁷ The target weight loss needs to be individualized, taking into account the cause and type of disability, the severity of the metabolic syndrome, the associated mobility impairment, and the presence of weakness, contracture, or other associated condition that may limit exercise. Again, decreasing the percentage body fat is key, although there has been no specific research to determine the optimal change required. The magnitude of weight loss should take into account typical health benefits and anticipated improvements in function. There have been no differences noted between men and women with disability.

   
   
3. 
   

   Which diet is the most effective for weight loss in people with disabilities?

   
   

   As long as there is a negative energy balance (expenditure is greater than intake), no particular diet has proven to have higher efficacy. Standards used for the general population likely suffice in most instances. Estimates of total energy expenditure in people with disability need to take into account age, baseline disease, the lower activity level, and metabolic status^58,59,60,61; gender does not appear to affect estimates. Estimates of the total energy expenditure can be obtained with the help of questionnaires specifically designed for people with disabilities.^{62,63,64,65,66}

   
   

   People with disability tend to have a lower baseline energy requirement. Weight loss requires an energy deficit, in this case without worsening the lean body mass. High-protein diets may prevent lean body mass loss in patients with sarcopenic obesity.⁶⁷ Protein-energy malnutrition that occurs with significantly lower food intake is associated with risk of falls and disability in the elderly^68,69; supplementation with proteins and vitamin D diminishes this risk of falls and may prevent further disability.^70,71 As in the general population, a good estimate of typical caloric intake can be provided by 24-hour recalls, food-frequency questionnaires, and estimated diet records^72,73,74 with nutritional analysis software.⁷⁵

   
   

   Adults with functional mobility impairments appear to have a higher prevalence for metabolic syndrome^51,76; therefore, consideration of those diet programs that focus on decreasing cardiometabolic risks may be of benefit.^77,78

   
   
4. 
   

   For people with disability, is diet or exercise the best way to lose weight?

   
   

   A successful weight loss program should include diet, physical activity, and behavioral counseling for changes whether or not a disability is present. The program content does not appear to be dependent on gender. Possible differences in styles of communication or modifications for disability (e.g., cognition, hearing impairment) should be acknowledged. When diet is associated with physical activity, there is greater weight loss and decrease in cardiometabolic risk.⁷⁹ Physical activity involves aerobic exercises to maximize fat loss, especially in visceral adipose tissue,⁸⁰ and resistance training (anaerobic exercise) to preserve lean body mass. People with disability may require adaptations to the exercise program to accommodate their physical limitations. Counseling for behavior change should take into account disability aspects, including modifications for cognitive impairments. Mobility and financial issues may prevent people with disability from accessing face-to-face counseling and supervision of physical activity. Nutritional counseling alone has been reported as ineffective for weight management and change in cardiovascular risk for people with disability,⁸¹ and additional counseling for problem solving, stress management, and self-efficacy. Coaching, both on site⁸² and web based,⁸³ appears to be beneficial in achieving weight loss for persons with disability.

   
   
5. 
   

   How can people with disability maintain weight loss?

   
   

   For the general population, Wing and Hill⁸⁴ defined successful weight loss maintenance as intentional loss of at least 10% of body weight maintained for at least 1 year. Individuals who kept their weight off for 2 years or more were more likely to succeed in keeping it off. There are no specific data related to women with disability, but there may be some lessons to generalize from the larger population, modified for disability specific issues.⁸⁵ Healthy weight management requires behavioral lifestyle changes,⁸⁶ and there may be an additional component of support needed for people with disability.

   
   
6. 
   

   Should anyone with physical disability receive bariatric surgery?

   
   

   Bariatric surgery may be offered to people whose BMI is greater than 40 or with a BMI above 35 and associated obesity comorbidities who have failed conservative treatment.⁵⁴ People with disability are now also being offered bariatric surgery, and there are case reports and series related to adolescents and adults with spina bifida,⁸⁷ SCI,^88,89 ID,⁹⁰ Prader-Willi syndrome,^91,92 and multiple sclerosis.⁹³ In general, people with disability note similar benefits, such as decreased cardiovascular risks and improved physical functioning,⁹⁴ sleep, and health perception.⁹⁵ However, similar complications are also noted, and monitoring is required to determine disability-specific issues or responses.

   
   

   At present, the indications for bariatric surgery for people with disability must be individualized. Typical BMI or other criteria used to recommend bariatric surgery and long-term safety need to be established for people with disability, given their higher prevalence of nutritional and neurological impairments. Significant weight loss or change to body composition through diet, exercise, and behavioral modifications may not be realistic in this population, leaving bariatric surgery as an effective and viable option.