Individuals with disabilities are less likely to receive preventive care services than those in the general population. Prevention is very important in persons with spinal cord injuries and disorders for both common conditions such as respiratory infections and for conditions common in spinal cord disorders such as neurogenic bowel, because these individuals are at increased risk for negative outcomes. Clinical practice guidelines provide evidence-based recommendations for patient care. However, dissemination of guidelines is not sufficient to increase use of recommended care. Implementation research has identified strategies to increase use of evidence-based care and subsequently improve patient outcomes.
Prevention is a primary goal of medical care. For individuals with chronic impairments, such as those with spinal cord injuries and disorders (SCD [unless otherwise specified, the abbreviation SCD will refer to individuals with spinal cord injuries and/or disorders]), prevention is an even more important goal, because illness often is complicated by the existing disability. Health care providers and individuals with SCD need to be very concerned with prevention of common problems, such as, for example, influenza, because the literature indicates that persons with spinal cord injuries who contract influenza have a much higher risk of dying from complications than those in the general population . Issues such as smoking and obesity, which are affected by individual lifestyle and behaviors, take on greater complexity in persons with SCD who have respiratory impairments and greater challenges with physical activity and diet. Research indicates that individuals with disabilities are less likely to receive preventive care services and screenings than the general population . This chapter provides information on current prevalence proportions of several preventable conditions for individuals with SCD, presents the current evidence regarding prevention of these illnesses and conditions, and then provides examples of how use to implementation strategies to increase the use of evidence-based preventive care in individuals with SCD.
Prevalence of common conditions
The major causes of death in the United States are chronic diseases, including heart disease and cancer . These and many other serious health problems are thought to disproportionately affect individuals with SCD and to affect them at earlier ages than the general population. A recent survey of veterans with SCD was conducted to assess the prevalence of conditions or diseases, characterize the nature and extent of health behaviors, assess the provision and use of preventive health services, and to determine factors and characteristics that influenced health promotion behaviors in individuals with SCD . This survey replicated items from the Behavioral Risk Factor Surveillance System (BRFSS) survey, which was developed to provide data for health planning and policy and to serve as an infrastructure for behavioral surveillance . The BRFSS is an ongoing annual surveillance system supported by the Centers for Disease Control and Prevention (CDC) that is used to collect data on the behaviors and conditions that place adults at risk for chronic illnesses, injuries, and preventable infectious diseases that are the primary causes of morbidity and mortality in the United States. A limitation to these public data is that information specific to individuals with several types of disabilities is not available. The survey (SCD_BRFSS), using items from the BRFSS survey , was fielded to individuals with SCD to obtain disability-specific information.
The 2003 cross-sectional, prospective SCD_BRFSS survey was distributed to members of the Paralyzed Veterans of America (PVA) (including those who receive health care at Veterans Health Administration [VHA] facilities and elsewhere). Survey questions were derived from the CDC BRFSS questionnaire (core and optional modules, BRFSS) . Respondents were men (97%), white (82%), and had completed some college or technical school (72%), and 58% were married. On average, they were 60 years of age, nearly a quarter lived alone (24%), and only 10% were employed for wages. More than half had a paraplegic-level injury (52%), had been injured for an average of 24 years, and had an average age at injury of 36 years.
The prevalence of several conditions is presented below, followed by use of preventive health services with references to the recommended guidelines for each service as documented by appropriate organizations such as the US Preventive Services Task Force; National Heart, Lung, and Blood Institute; American Cancer Society; and the Advisory Committee on Immunization Practices (ACIP). Each preventive measure was examined in terms of appropriate timing and age of receipt according to the guidelines.
Prevalence proportions from the SCD_BRFSS survey were compared with the national 2003 population-based CDC BRFSS survey data . Data were examined overall and by age categories for several conditions and diseases for which prevention can have a significant impact. Findings are presented in Table 1 .
Veterans with SCD | General population data a | |
---|---|---|
Diabetes b | — | — |
Overall | 19.39 | 6.7 |
Aged 55–64 | 20.75 | 12.7 |
Aged 65+ | 25.08 | 15.5 |
High blood pressure c | — | — |
Overall | 48.90 | 25.6 |
Aged 55–64 | 50.68 | 41.9 |
Aged 65+ | 61.70 | 53.0 |
High cholesterol c | — | — |
Overall | 47.03 | 30.2 |
Aged 55–64 | 50.43 | 43.9 |
Aged 65+ | 49.40 | 43.9 |
a Median percent from nationwide BRFSS data.
Cholesterol and blood pressure
Notably more respondents with SCD than those in the general population reported having high blood pressure (note that autonomic dysreflexia may complicate this method of self-report) (49% versus 26%, respectively) and high cholesterol (47% versus 30%, respectively). Not surprisingly, prevalence increased with age in both groups; however, as age increased, differences between groups declined. Studies using clinical data have found that although about 10% of the US population has high-density lipoprotein (HDL) values <35 mg/dL, 24% to 40% of individuals with tetraplegia have been found to have depressed HDL values . Among persons with all levels of SCD, approximately 25% have elevated low-density lipoprotein (LDL) levels . In another study, Weaver and colleagues concluded that providers need guidelines to address prevention and treatment of these prevalent conditions in SCD and point out that these also serve as risk factors for several other chronic conditions such as cardiovascular disease and diabetes.
Diabetes
Self-reported diabetes was more prevalent in patients with SCD than in the general population overall (19% versus 7%) and for those aged 55 to 64 (21% versus 13%) and aged 65 and older (25% versus 16%) according to the SCD_BRFSS and the CDC 2003 BRFSS. Other studies have reported rates of diabetes from 13% to 22% in individuals with SCD . LaVela and colleagues found that one fourth of persons with SCD and diabetes reported that diabetes affected their eyes or that they had retinopathy (25%), and 41% had foot sores that took more than 4 weeks to heal. These rates are higher than reported rates for the population in general. Unique challenges related to common risk factors for diabetes in the SCD population (eg, inactivity, decreased muscle mass), and the consequences of diabetes and slower healing suggest that guidelines on diabetes prevention and care management specific to SCD would be advantageous. In the interim, a reasonable strategy would be to follow the existing guidelines for diabetes screening and management for the general population in SCD (eg, VHA/Department of Defense clinical Practice Guideline for Management of Diabetes Mellitus in Primary Care; http://www.oqp.med.va./gov/cpg/cpg.htm accessed 1/23/2007).
In addition to the areas covered in the SCD_BRFSS survey, the literature discusses other areas in which careful attention to and development of preventive measures to improve and maintain the health of persons with SCD would be highly beneficial. These include the growing epidemic of obesity, infections, and some cancers.
Obesity
Obesity is a significant problem for individuals with disabilities. Although 15% of the general population is considered obese, 25% of persons with disabilities have been identified as being obese . In addition, individuals with mobility difficulties had the greatest risk of being obese. George and colleagues reported that sedentary men with spinal cord injuries had an average body fat percentage of 25% compared with 17% for weight-matched, able-bodied men when measured by hydrodensitometry. Spungen and colleagues found that persons with SCD were 13% ± 1% fatter per unit of body mass index (BMI) (based on fat to lean body mass) than an able-bodied group, suggesting that ideal body weight charts should be adjusted when evaluating individuals with SCD. In a sample of veterans with SCD, Weaver and colleagues found that 20% had a BMI greater than or equal to 30 kg/m 2 , putting them into the obese category but cautioned that this is likely an underestimation of obesity in SCD. The ability to address obesity prevention in persons with SCD is hampered by not only intrinsic complexities such as difficulty exercising in high-level tetraplegia, but also by a lack of guidelines for health care providers on how to help persons with SCD lose weight and exercise.
Infection
Individuals with SCD have a high lifelong risk for systemic infection . Infection is the most common reason for rehospitalization and emergency room visits and a primary cause of death for persons with SCD . Common infections in SCD include pneumonias, urinary tract infections, and infections from pressure ulcers. LaVela and colleagues found that urinary tract infections and bloodstream infections were the most common nosocomial infections in veterans with SCD. Further, the overall number of nosocomial infections in this population (36.1 per 1000 patient days) was higher than what has been reported in the literature in various populations (ranges from 2.2 to 15 per 1000 patient days) . Persons with SCD are more likely to be hospitalized than those in the general public, and the risk of contracting a nosocomial infection increases with longer lengths of hospital stays, thus increasing the risk of infection in SCD.
Prevention is of utmost importance in this population because persons with SCD often spend more time in a hospital setting (at risk for hospital-acquired infections) , are more likely to rely on medical equipment and devices , and may have more skin infections while hospitalized because of multiple changes in skin morphology and susceptibility to pressure ulcers than those in other populations. Specific guidelines to prevent or reduce infection occurrence in SCD are beginning to emerge. For example, the CDC has identified SCD as a high-risk condition for influenza vaccination , prioritizing receipt of this preventive measure among this population. Respondents to the SCD_BRFSS survey were slightly less likely to be vaccinated against influenza and more likely to be vaccinated against pneumonia than those in the general population (67% versus 70%; and 73% versus 64%; respectively).
Cancer (select examples)
Bladder cancer
Individuals with SCD are at increased risk of bladder cancer; this cancer is more likely to be diagnosed at a later stage and is less likely to be amenable to surgical treatment and more likely to result in death . Surveillance is more difficult because it is common to have other symptoms or signs that may be indicative of cancer in the general population but not in persons with SCD. For example, hematuria is rare in the general population but may occur quite frequently in people who use catheters. Several retrospective studies have found that the rate of squamous cell bladder cancer is higher in individuals with SCD who have used long-term indwelling catheters for 8 or more years to manage their bladders . Individuals with SCD are 15.2 times more likely to have bladder cancer than those in the general population . However, this cancer is rare, so the numbers in those with SCD, although higher than in the general population, are low.
The Consortium for Spinal Cord Medicine recently published a clinical practice guideline on bladder management for persons with spinal cord injuries . Although the guideline recommends the use of intermittent catheterization for bladder management, when possible, to limit complications, there are a number of reasons why this strategy is not possible in some individuals, including those who are unable to catheterize themselves, those who have poor cognition or lack motivation, those who have high fluid intake, and those with bladder anatomy abnormalities. In these individuals, it is important to address other risk factors, such as smoking, and to monitor them for the possible occurrence of cancer.
Prostate cancer
Uncertainty exists and the literature is inconclusive regarding risk for prostate cancer in patients with SCD. Some studies have found that testosterone levels that are usually low in individuals with SCD may be protective against prostate cancer . Other studies have reported that prostatic inflammation puts persons with SCD at increased risk for prostate cancer . Although some research has reported that the incidence of prostate cancer and the proportion of individuals with prostate cancer is lower in persons with SCD than the general population, it is more likely to be diagnosed at a more advanced stage and grade . As the lifespan for persons with SCD approaches that of the general population, prostate cancer is likely to become a more clinically significant disease in these men . Additional research is necessary to understand the usefulness of supplementary screening programs for this population.
Colorectal cancer
It is unclear whether the risk for colorectal cancer is higher in persons with SCD. One study found a two to six times higher incidence of colorectal cancer in SCD than in the able-bodied population . Another study reported that the incidence is the same as in the normal population but noted that the diagnosis often was delayed in SCD . Problems such as constipation and sensory deficits may put persons with SCD at greater risk for colorectal cancer. In addition, surveillance is challenging in SCD, because blood in the stool (one of the main screening tests) is common in people who do digital stimulation with their bowel program, making the specificity and sensitivity of such tests very different in the SCD population. Also, many of the lifestyle and behaviorally based risk factors for colorectal cancer (eg, physical inactivity, obesity) are more prevalent in persons with SCD. General recommendations for colon cancer screening exist, and at least one study has made specific recommendations for individuals with SCD (described below) .