Proceedings: First Colloquium on Preventing Secondary Disabilities Among People with Spinal Cord Injuries. February 27-28, 1990, Atlanta, Georgia.

Edited by Philip L. Graitcer, D.M.D., M.P.H. and Frederick M. Maynard, M.D.  Published by the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, at the former Center for Environmental Health and Injury Control, Division of Injury Control and Disabilities Prevention Program.

Sponsored by: National Council on Disability, Association of State and Territorial Health Officials, American Spinal Injury Association, National Academy of Sciences, Institute of Medicine, National Institute of Disability and Rehabilitation Research, and the Centers for Disease Control

This proceeding was scanned and reformatted in 2003 by Dionte Johnson, Disability and Health Team Fellow, Tennessee State University.

(Please use Web citation if citing this reformatted document - 67 printed pages)

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TABLE OF CONTENTS (32 links)

Forward
Introduction
Executive Summary
Charge to Participants
A Framework for preventing secondary conditions:
Data Sources
Functional Expectation in Spinal Cord Injury
Injury Interventions in Public Health Practice
Setting the Conceptual Landscape
Workgroup Reports:
Cardiovascular-Cardiopulmonary Secondary Disabilities
Genitourinary and Bowel Secondary Disabilities
Neuromusculoskeletal Secondary Disabilities
Psychosocial Secondary Disabilities
Skin-Related Secondary Disabilities
Abstracts from the workgroup Presentations:
Cardiovascular Health with Functional Electrical Stimulation
Effects of Physical Activity on Lipoprotein Cholesterol
Pulmonary Complication Prevention
Surgical Management of Neurogenic Bladder
Genitourinary Complications
Epidemiology and Importance of Urinary Tract Infections
Infertility in Males with Spinal Cord Injury
Heterotopic Ossification
Neurological Recovery
Musculoskeletal Complications
Community-based Support Services
Life Satisfaction Survey
Alcohol and Other Drug Abuse
Minorities with Disabilities
Microvascular Wound Reconstruction
Computer Applications for Evaluating People at Risk for Pressure Sores
Clinical Prevention of Decubitus Ulcers
Reducing Risk of Pressure Sores
Appendices
Bibliography
Colloquium Participants

FORWARD

William L. Roper, M.D., M.P.H.
Director, Centers for Disease Control

In late February 1990 the Centers for Disease Control (CDC) and five other groups—the National Council on Disability, the Association of State and Territorial Health Officials, the National Institute on Disability and Rehabilitation Research, the National Academy of Sciences/Institute of Medicine, and the American Spinal Injury Association—convened a unique assembly.

For the first time, health care professionals, public health officials, and consumers joined together to develop research and public health strategies to prevent the debilitating secondary disabilities that adversely affect so many people with spinal cord injuries and keep them from leading independent lives. This report is the result of 2 days of intensive debate, discussion, and deliberation. It combines the varied perspectives of the meeting’s many capable and committed participants.

I thank those participants for their time, energy, and resolve and thank the sponsoring bodies that joined with CDC and worked so hard to make the colloquium a reality. This volume is an important step in promoting health and preventing illness in people with spinal cord injuries.

INTRODUCTION

Philip L. Graitcer, DMD, MPH
Division of Injury Control, Center for Environmental Health and Injury Control
Centers for Disease Control  and

Frederick M. Maynard, MD
Department of Physical Medicine and Rehabilitation
University of Michigan Medical School

This colloquium is a historic first meeting of public health and rehabilitation professionals and people with spinal cord injury dedicated specifically to the prevention of secondary disabilities that occur in people with spinal cord injury. The colloquium was designed to consolidate knowledge about the epidemiology, etiology, treatment and costs of these secondary disabilities and to develop a research, clinical care, and public health agenda for their prevention.

Secondary disabilities have a substantial impact on people with spinal cord injury. During their postinjury lifetimes, nearly all experience pressure sores. Clinical depression may be five times more prevalent than in the general population. Urinary tract infections are almost inevitable. Fertility problems affect most spinal-injured men. Pain, contractures, and spasticity are common occurrences. Treatment for these disabilities, when available, is costly and may not be reimbursable by insurance or medical assistance programs. Untreated, these disabilities can result in handicaps that affect the quality of life and deprive the spinal-injured person of his or her independence.

Despite their pervasiveness, little is known about the risk factors that are responsible for the occurrence of secondary disabilities, their distribution in the spinal-injured population, effective treatment for such people, personal behaviors as controlling factors, or personal and public-health interventions that might prevent secondary disabilities. 

Although much progress is being made in treating people with certain secondary disabilities, much more needs to be done. We have focused our efforts during this colloquium on three areas: epidemiology. clinical research, and prevention and care. 

Epidemiology - Information on risk factors associated with secondary disability, including gender, aging, and type and completeness of injury, needs to he collected. Sources of data on secondary disabilities need to be identified and evaluated. Uniform case definitions for secondary disabilities are critically needed. 

Clinical Research - The natural history of secondary disabilities needs to be described more fully. What complications result in disabilities and handicaps? Prevention and therapeutic strategies should be evaluated by using multi-center trials. The impact of psychosocial factors, such as drug and alcohol abuse and clinical depression, on secondary disabilities needs to be examined. 

Prevention and Care - Strategies to prevent secondary disabilities should be part of continuing care for people with spinal cord injury; these strategies should include the application of early and consistent prevention interventions. Public health agencies can play a primary role in preventing spinal cord injury and in evaluating these primary prevention interventions. In addition, public health departments can stimulate and help groups that support independent living for the spinal-injured person and can lend surveillance and epidemiologic expertise to evaluations of treatment and prevention strategies for secondary disabilities. 

The colloquium was cosponsored by the National Council on Disability, the Association of State and Territorial Health Officials, the National Institute of Disability and Rehabilitation Research, the American Spinal Injury Association, the National Academy of Sciences, lnstitutes of Medicine, and the Centers for Disease Control. This meeting could not have been held without the suggestions, encouragement, and enthusiasm of many people. We thank Marcus Furher, Lesley Hudson, Mark Richards, John Shatzlein, and Kent Waldrep for their suggestions, ideas, and help in inviting many of the experts who attended this meeting. Mark Long and Joe Smith capably handled many of the administrative and organizational details for this colloquium. The Center for Disease Control’s Disabilities Prevention Program provided substantial support for the colloquium. We especially thank Larry Burt, the program’s coordinator, and Vernon N. Houk, Director, and Jack Jackson, Deputy Director, of the Center for Environmental Health and Injury Control for their efforts.

EXECUTIVE SUMMARY

The First Colloquium on Preventing Secondary Disabilities Among People with Spinal Cord Injuries was held in Atlanta on February 27-28, 1990, to assess state-of-the-art prevention strategies and interventions. Cosponsors were the Centers for Disease Control (CDC), the National Council on Disability, the Association of State and Territorial Health Officials, the National Institute on Disability and Rehabilitation Research, the National Academy of Sciences/Institute of Medicine, and the American Spinal Injury Association. 

About 100 people representing the public health, rehabilitation, and consumer communities participated. They discussed the various terms and strategies used in rehabilitation and public health practice and worked to establish a common framework for examining secondary disabilities. Participants were assigned to workgroups focusing on five secondary complication areas: cardiovascular-cardiopulmonary, genitourinary and bowel, neuromusculoskeletal, psychosocial, and skin. Each group assessed the incidence and prevalence of the secondary disability, its epidemiology and its associated costs as well as available prevention strategies, research needed to develop new prevention strategies~ and the public health’s role in prevention. Workgroup leaders then presented their recommendations, which are summarized as follows: 

General Recommendations - The following are directed to CDC and other public health officials: 

• Develop uniform case definitions for secondary disabilities.

• Design objective techniques for collecting data on risk factors associated with secondary disabilities.

• Study the incidence and prevalence of secondary disabilities, and use the data to predict risks for people with spinal cord injuries (SCI).

• Conduct multi-center trials to test and develop new preventive and therapeutic interventions that can be applied in clinics and at home, and study ways to modify equipment such as wheelchairs and pressure sore-prevention devices.

• Establish centralized public networks to inform people about spinal cord injuries, secondary disabilities, and prevention strategies.

• Develop wellness programs for people with SCI to promote health and prevent related diseases and rehospitalization.

•Train health care professionals to educate patients about ways to prevent complications from becoming major medical problems.

• Study the costs of treating secondary disabilities and current private insurance and Medicaid coverage for people with spinal cord injuries and secondary disabilities. 

Specific Recommendations of Each Workgroup 

Cardiovascular-Cardiopulmonary Secondary Disabilities

• Focus on interventions to prevent the development of cardiovascular-cardiopulmonary disabilities and promote health, such as weight control or blood pressure control programs and campaigns that encourage people with SCI to increase their physical activity, stop smoking and abusing drugs, reduce alcohol consumption, and improve their diets.

• Evaluate the efficacy and cost of offering special cardiovascular conditioning programs, such as arm exercise regimens or functional electrical stimulation to contract muscles. 

Genitourinary and Bowel Secondary Disabilities

• Survey treatment centers that provide electro-ejaculatory stimulation to assess their interest in pursuing further research in male infertility. In addition, conduct research on infertility among female SCI patients, and improve the dissemination of facts regarding pregnancy and birth control.

• Study the differences in bladder management for males and females, and disseminate outcome data from case-control studies to help public health officials standardize bladder management techniques, define quality of care, and establish treatment goals for people with SCI.

• Standardize prophylactic treatments and methods for preventing long-term complications associated with urinary tract infections.

• Study the use of anticholinergic medications and their long-term effects on bowel function, and fund training of public health officials in administering bowel programs.

Neuromusculoskeletal Secondary Disabilities

• Assign a portion of highway fines; alcohol, agricultural, and construction taxes; and sport and hunting license fees to fund programs for preventing secondary disabilities. This would place the economic burden on people who engage in high-risk activities that can lead to spinal cord injuries.

• Study occupational settings to improve ergonomics specifically for people with SCI, which would improve their productivity and chances for career advancement.

• Study older people with spinal cord injuries to develop strategies for preventing overuse injuries. Evaluate holistic treatment approaches such as the use of attendant care or energy-conserving equipment, which could prevent injuries and prolong the person’s years in the

• Establish a long-term surveillance system to determine the incidence, prevalence, etiology, and risk factors for handicaps and for diminished subjective well-being among people with SCI.

• Support studies that document the environmental and societal constraints on people with SCI, that have long-term rather than “one shot” designs, that focus on treatment outcomes related to psychosocial variables, and that concentrate on problems which surface after the SCI person has returned to the community. 

Skin-Related Secondary Disabilities

• Study people with SCI to define which tissues are at risk for developing pressure sores and to identify methods for improving tissue status and techniques for changing behavioral factors that cause pressure sores.

• Identify gaps and barriers in the health care delivery system that might increase pressure sores among people with SCI.

• Update licensing standards for facilities that provide acute care, rehabilitation, and long-term care to people with SCI.

• Encourage interaction with vocational rehabilitation programs for people with spinal cord injuries.

CHARGE TO PARTICIPANTS

Arthur C. (Jack) Jackson, Deputy Director
Center for Environmental Health and Injury Control, Centers for Disease Control

On behalf of the Centers for Disease Control (CDC), I would like to welcome each of you to Atlanta, and I would like to thank Dr. Philip Graitcer, who’s thanked everybody else, for putting this meeting together, and Fred Maynard, Chairperson of the Planning Committee, for making this meeting possible. Unfortunately, Dr. Vernon Houk, who has a great interest in this area, is on his way to Johnston Atoll in the mid-Pacific. He would rather be here than on his way there, believe me. I am, however, delighted to provide a charge to this colloquium.

This colloquium is a historic meeting of the public health, rehabilitation, and consumer communities. It provides a unique opportunity and challenge to all of us to become more effective in our efforts to prevent secondary injuries in the person with a spinal cord injury, and it can serve as a model in addressing the problem of secondary disabilities in other populations with disabilities. This colloquium is unique. It is the first meeting that has been entirely devoted to the prevention of secondary disabilities in the person with a spinal cord injury. It also offers the sponsors their first opportunity to work together, and we look forward to building on this relationship.

Plans for this colloquium, and CDC’s interest in the prevention of secondary disabilities, can be traced to the publication in 1985 and 1986 of two landmark documents: Toward Independence and Injury in America.’2 Prepared by the National Council on Disability, Toward independence provided Congress with an assessment of laws and programs affecting people with disabilities.(1, 2) Among other recommendations, the report called for a Federal initiative to prevent disabilities through the coordination of prevention programs at the local, State, and Federal levels. CDC began this initiative with a $3.8 million appropriation that established State-based and institution-based programs in disabilities prevention. This initiative would not have occurred when it did had it not been for the foresight of Sandy Parrino, Michael Marge, Kent Waldrep, and other members of the National Council on Disability.

Injury in America, the second document, was prepared by a select committee of the Institute of Medicine. The committee examined injuries as a public health problem and recommended that the Federal government take a leadership role in the conduct of research to prevent and control injuries by using public health principles. CDC initially received $10 million from the Department of Transportation (DOT) as a result of an appropriation by Congress to DOT for this effort. Two programs in the Center for Environmental Health and Injury Control— the Disabilities Prevention Program and the Division of Injury Epidemiology and Control—were created to respond to these initiatives.

The development of these programs has been challenging. We’ve learned new terminology, new methodologies, and new sensitivities, and we’ve had the opportunity to meet and work with numerous individuals and groups concerned with injury and disability. It has been exciting. The comments of those with a disability and the comments from the National Council on Disability have helped to increase our sensitivity to accessibility, funding, and transportation issues. We’ve learned about rehabilitation issues from the American Spinal Injury Association and the National Institute on Disability and Rehabilitation Research, and we’ve become familiar with the continuity of care and medical cost issues as a result of our work with the National Head Injury Foundation and the Institute of Medicine.

This colloquium marks the beginning of our joint efforts to develop research and prevention strategies to prevent secondary disabilities in people with spinal cord injuries, though we have already begun to establish a broad base of primary injury and disability prevention efforts. Although not a part of this colloquium, CDC’s disability prevention activities are also addressing developmental disabilities and selected chronic disease conditions. First, let me discuss accomplishments.

We have been developing a public health infrastructure in many ways. We’ve awarded nearly $7 million in extramural grants for disability and injury prevention programs in State and local health departments. As a result, nine States entered into cooperative agreements to develop disability prevention programs, and 16 State, county, and city health departments have received grants to develop injury prevention programs.

In the area of methods of research, CDC has cooperative agreements with the University of Michigan, the Arkansas State Spinal Cord Commission, the University of Montana, and the University of Alabama at Birmingham to determine the incidence and prevalence of secondary disabilities and to assess the effectiveness and cost of interventions designed to prevent secondary disabilities. You will hear more about these projects during the colloquium.

We developed guidelines for the surveillance of head and spinal cord injuries by health departments, and we have worked with the Association of State and Territorial Health Officials to make traumatic spinal cord injury a reportable health condition. We’ve awarded more than $750,000 to health departments to develop model systems for the surveillance of injuries and disabilities. In the area of policy, the Secretary of Health and Human Services has established a National Advisory Committee for Injury Prevention. CDC and the National Council on Disability, as you’ve already heard, have contracted with the Institute of Medicine (IOM) of the National Academy of Sciences to establish a committee to review the disability problem in the United States. IOM is developing recommendations for a national agenda for disability prevention. Using data gathered from community disability programs and from people and organizations active in disability prevention, we’re seeking to establish a broad national consensus on future directions in disability prevention. The IOM report is expected in early 1991.

Now let me turn to current and future directions. We hope that this colloquium will serve as the ground-breaking event in efforts to develop strategies to prevent secondary disabilities in the person with a spinal cord injury. We will be publishing, as you’ve already heard, proceedings from this colloquium, and we hope that, like Toward Independence and Injury in America, the proceedings will be a sentinel work in the field of secondary disability prevention. The background, talents, and experience of the colloquium participants are impressive. Let us join together to develop a strategy for the prevention of secondary disability in the spinal cord injured.

So that we can accomplish this objective, let me ask you to pay special attention to the following needs. To develop an effective epidemiological research and prevention strategy that will address secondary disabilities in the person with a spinal cord injury, we must establish a common vocabulary. Terms such as disability, secondary disabilities, secondary complications, and physical limitations and impairments are frequently used interchangeably. We need to establish common usages for these terms that will apply in our public health prevention settings. The Institute of Medicine has already devoted considerable time to this issue, and we hope that Andy Pope and members of the committee who are present will share their thoughts with us during this meeting.

We must determine ways to measure the costs of secondary disabilities. This should include not only hospital, provider, and therapy costs, but also personal care, home renovation, transportation, and other day-to-day living expenses faced by the person with a secondary disability.

We must identify data sources for secondary disabilities. Data on secondary disabilities are scarce. This scarcity makes priority setting and program evaluation dependent on inaccurate and sometimes even anecdotal data. We know little about the epidemiology of secondary disabilities. How are they distributed in the community? Whom do they affect? How serious is each secondary condition? Do all people with secondary disabilities need medical attention? How many secondary disabilities can be prevented by early intervention?

We must evaluate intervention prevention strategies. What prevention strategies have been used to prevent secondary disabilities? Are they effective? Can we use these strategies in a public health setting? What prevention strategies are promising? Do they need to be further evaluated?

We must determine the best role for the public health community and CDC to play in the prevention of secondary disabilities. How can we best support the development and implementation of strategies to prevent secondary disabilities? What are the research needs? What should be the role of public health agencies in the prevention of these secondary disabilities? We must determine the need for prevention approaches and services from the perspective of the person with a primary or secondary disability, or both.

And finally, we must learn more about the technology and independent-living resources that enable the person with a disability to function more effectively in his or her environment. The assessment of these technologies and the impact of these independent living resources on a person’s effective functioning in a community are of great concern in developing a strategy for the prevention of secondary disabilities.

This is indeed a Herculean task for a 2-day meeting. I am confident that we can make some headway toward completing it. In closing, I would again like to express to you CDC’s gratitude for your participation. I urge you to focus on the questions that are in your colloquium material. We are addressing significant public health issues that are crying out for attention. Thank you for your attention, and enjoy your stay in Atlanta.

References

1. Committee on Trauma Research, Commission on Life Sciences, National Research Council, the Institute of Medicine. Injury in America: a continuing public health problem. Washington, D.C.: National Academy Press, 1985.

2. National Council on the Handicapped. Toward Independence. Washington, D.C.: U.S. Government Printing Office, 1986.

A FRAMEWORK FOR PREVENTING SECONDARY DISABILITY (21 pages)

Data Sources for Spinal Cord Injury

Joseph E. Sniezek, M.D., M.P.H., Medical Epidemiologist
Division of Injury Control, Center for Environmental Health and Injury Control
Centers for Disease Control

In the past, epidemiologists have been described as physicians who can count, and this counting, of course, referred to infectious diseases.(1) Certainly, epidemiologists do more than count today, and the field of epidemiology addresses more than just infectious diseases. We now address occupational and chronic diseases and, most importantly from my point of view, we address injuries.

This meeting certainly illustrates the expansion of the field, and it’s certainly consistent with the definition of epidemiology as the science of the occurrence of disease or injuries in human populations.(2) Injuries, like infectious diseases, are preventable health events, but only recently have they been addressed from a public health perspective. Today and tomorrow, we are considering a public health approach to secondary disabilities in those persons with spinal cord injury.

In my talk this morning, I’d like to discuss surveillance data and what it can do for us and to contrast surveillance with epidemiologic studies. Surveillance data and epidemiologic research data are different, and we need to appreciate their differences and limitations.

Surveillance is defined as the ongoing systematic collection, analysis, and interpretation of health data needed for planning, implementing, and then evaluating public health programs. The timely dissemination of the data to those who need to know is an integral part of surveillance. Public health surveillance involves collecting data and using them to tell us whether we need to take action, and they should also tell us if the action we took was effective.(3) 

So why do we conduct surveillance? Surveillance can provide us with a quantitative estimate of the magnitude of the morbidity and mortality of a health problem, identify clusters of injury events, identify factors in injury occurrence, and stimulate epidemiologic research. An important function of surveillance is to measure the effectiveness of prevention strategies.

We can illustrate surveillance by using AIDS and spinal cord injury as examples. Surveillance for AIDS has been done by making AIDS a reportable health condition. Surveillance has allowed public health professionals to describe the geographic patterns, the age and sex distribution, and the modes of transmission of this major public health problem.(4) The Federal Government has recommended that spinal cord injury be made a reportable health condition.(5)

Specifically, our purposes for conducting spinal cord injury surveillance are to better define the incidence of these injuries on a national level. As most of you realize, there’s no adequate national data source to describe the incidence of spinal cord injury on a national level. We also want to identify high-risk groups. Although available data identify adolescent and young adult males as high-risk individuals, risk groups might differ by geographic area. Surveillance can identify groups at State and local levels. Identification of high-risk groups will allow us to target our prevention strategies. We want to better define etiology so that additional prevention strategies can be developed and implemented. In addition, we want to evaluate prevention programs. We want to know if our prevention efforts are effective in reducing the incidence of spinal cord injury.

As mentioned, surveillance should identify clusters. In 1988, there was an apparent cluster of diving-related spinal cord injuries in Wisconsin that was thought to be related to the existing drought conditions and low water levels in lakes.(6) Our spinal cord injury surveillance efforts led to an investigation of this cluster.

Another apparent cluster of spinal cord injuries, identified through surveillance, occurred in Louisiana last fall, when four high school athletes sustained football-related spinal cord injuries. This is a dramatic increase in this type of injury. These injuries appeared to result from “spearing.” Spearing, which is head-first contact, is illegal in high school and college football. An investigation of this cluster has led to the development of a prevention program targeted at educating coaches and officials about the dangers of spearing.

Usual data sources for injury surveillance, such as hospital discharge or health interview surveys are not adequate for spinal cord injury surveillance. Historically, data to describe spinal cord injury have been obtained from hospitals treating persons with spinal cord injury and State-based registries of persons with spinal cord injury. There are however, limitations in these sources.

Spinal cord injury data have been collected by hospitals serving persons su5tainng spinal cord injury. These data have been used to characterize spinal cord injury in the population. Problems exist when surveillance teams attempt to use only data on persons presenting for treatment to one hospital or one group of hospitals, such as the Model Systems.(7) These data may not be representative of all persons sustaining spinal cord injury in the population. We have no information on those persons not presenting for treatment. These persons may differ from those presenting for treatment. Although these data ma be valuable in assessing the quality of care, they are less valuable for surveillance purposes. Many case series reports of spinal cord injury appear in the literature. In addition to not knowing about cases omitted from the series, we often don’t know how cases were identified and then included in the study. Comparing data across studies is often impossible.

State-based programs that provide services for persons with spinal cord injury often maintain registries. These State-based registries are usually developed to aid in the planning or provision of rehabilitation, social, or family services. These registries by themselves are not surveillance systems because they are not linked to public health practice, and their data are not routinely analyzed and disseminated. By completing the link between data collection, analysis, and dissemination for public health programs, these registries become a valuable source of data for public health surveillance.

There are some limitations in using these State-based registries for surveillance. Cases are sometimes missing, only limited information about the etiology of injury is usually available, and varying inclusion criteria are used. Data are also collected in different formats.

These variations in sources of spinal cord injury data illustrate an important limitation of surveillance data in general. Because surveillance data are usually collected voluntarily from many reporters and report sources, we typically have less control over collection and only a minimal amount of data is collected.(8) This lack of detail limits the usefulness of the data, In addition, cases may be missing or inaccurately diagnosed, or information may not be complete. Because surveillance data are limited in detail and may be incomplete, they cannot be used to assess the quality of care an individual receives, and they cannot be used to determine whether a treatment was effective. Public health surveillance teams usually do not collect enough data to answer these very specific questions.(8) Because of the lack of detail and potential incompleteness of surveillance data, we need to limit our use of these data to those projects we’ve already described.

Despite these limitations, however, surveillance data are essential for our basic public health mission. Surveillance data should drive public health programs. Better definition of the magnitude of the problem can help in the allocation of medical resources and provide the necessary information to determine what services are needed. Defining the magnitude of the problem may also help in the allocation of resources for research of spinal cord injury.

As I mentioned, surveillance stimulates epidemiologic research. Surveillance identities cases. Cases identified through surveillance can be the source of cases for more focused research addressing very specific issues, such as secondary complications in persons with spinal cord injury.(8) For example, spinal cord injury surveillance might identify persons who have been treated in Model Systems and those treated elsewhere. A careful comparison of these two groups may define differences in both short-term and long-term outcomes, indicating the benefits of a “systems” approach to care. Specific treatment modalities may also be investigated by using cases identified through surveillance.

Let us now turn to epidemiologic research. Epidemiologic research differs from surveillance. These studies are designed to answer more specific questions and to test hypotheses. Epidemiologic studies are frequently designed to answer etiologic questions, looking more for answers in the causal chain.(8)

Epidemiologic studies may also be designed to describe a problem in great detail. An example is Dr. Jess Kraus’s study of the incidence and outcome of spinal cord injury in northern California.(9) This study carefully ascertained cases of both fatal and nonfatal spinal cord injury in 18 northern California counties. Using very rigorous methods of case ascertainment, this study provided a snapshot picture, in time, of spinal cord injury. The case ascertainment protocol was very detailed, costly, and time-consuming, requiring more resources than are available for ongoing public health surveillance.

Data collection methods for epidemiologic studies differ from those of public health surveillance as well. Data collected for epidemiologic studies are usually much more complete and are specifically designed to answer a specific research question. The amount of data collected varies, depending on what is needed to answer the question. Frequently, great deals of data are collected. Unlike surveillance, epidemiologic studies offer the investigators a great deal of control over the collection of the data and enable them to ensure high data quality. Data collection, therefore, should be complete.(8)

A major distinguishing feature between surveillance and epidemiology is that epidemiologic data collection is not ongoing. Data are usually collected for a specified period of time, depending on the question under study. This time-limited data collection may not allow us to study time trends of a health condition. The link between epidemiologic studies and public health practice is not as clear as that for surveillance.

Analysis of epidemiologic data is usually much more complex than the analysis of surveillance data.(8) Depending on the study, we must also consider whether we need data on controls in epidemiologic studies. Analysis of surveillance data is much simpler. We are not able to control for any related factors because of the lack of detail in the data. When comparisons are made for surveillance, historical surveillance data are frequently used as a source of control group information.

In summary, surveillance is the ongoing, systematic collection, analysis, and interpretation of data linked to public health programs. We are excited about our spinal cord injury surveillance efforts. The data from these efforts will help us to better define the incidence and etiology of spinal cord injury, to identify high-risk groups, and to evaluate prevention programs. These data, however, are incomplete and lack sufficient detail. Surveillance data will not be adequate to investigate many aspects of secondary complications in persons with spinal cord injury. Epidemiologic studies and perhaps other data sources will be needed to address specific research questions for secondary complications. Surveillance can identify cases, however, so that more focused studies can be undertaken.

References

1. Rothman KJ. Foreword. In: Ahlbom A, Norell S. eds. Introduction to modem epidemiology. Chestnut Hill, Massachusetts: Epidemiology Resources, Inc., 1984:i.

2. Ahlbom A, Norell S. eds. Introduction to modem epidemiology. Chestnut Hill, Massachusetts: Epidemiology Resources, incl, 1984:1.

3. Centers for Disease Control. Guidelines for evaluating surveillance systems. MMWR1988;37(S-5):1-2.

4. Centers for Disease Control. AIDS and human immunodeficiency virus infection in the United states:1988 update. MMWR 1989;38 (S-4):1-2.

5. Council of State and Territorial Epidemiologists. Position statement no. 7. Brekenridge, Colorado: Council of State and Territorial Epidemiologists. 1988.

6. Centers for Disease Control. Diving-associated spinal cord injuries during drought conditions - Wisconsin, 1988 MMWR1988;37:453-4.

7. Stover SL, Fine PR, eds. Spinal cord injury—the facts and figures. Birmingham: The University of Alabama at Birmingham, 1986.

8. Thacker SB, Berkelman RL. Public health surveillance in the United States. Epidemiol Rev 1988; 10:1 M-90.

9. Kraus JF, Franti CF, Riggins RS, Richards F), Bochoni NO. Incidence of traumatic spinal cord lesions. J Chron Dis 1975;28:471-92.

Functional Expectation in Spinal Cord Injury

William Donovan, M.D., Vice President for Medical Affairs
The Institute for Rehabilitation and Research, Houston, Texas

We’ve been talking about the epidemiologic aspects of investigating the complications of spinal cord injury or secondary disabilities. Now, my charge is to acquaint you with what some of those secondary disabilities and complications are. I feel also that my charge is to acquaint you with some of the expectations for rehabilitation and to point out how these secondary complications can sidetrack or derail these functional expectations.  

The spinal cord is divided into segments -- Cervical Segments 1-8, Thoracic segments1-12, Lumbar segments I-5, and Sacral segments 1-5. (Reference - Structure of the Spinal Cord. Adapted from: Haymaker W. Bing’s Local Diagnosis in Neurological Diseases. 14th ed. St. Louis: DV Mosby, 1956.)

The lower cervical segments contain the nerves that control the upper extremities. The upper cervical segments control the diaphragm, a muscle below the ribs that is primarily responsible for breathing. When the upper cervical segments of the spinal cord are injured, then serious consideration must be given to maintaining ventilatory or breathing support for the rest of the individual’s life. 

Moving into the thoracic segments of the spinal cord, the thoracic muscles and abdominal muscles and corresponding skin are involved. In the lumbar and upper sacral spinal cord lies the control of the lower extremities; the sacral segments control bowel, bladder, sexual function, and also sensory innervations in the area of the seating surface, which is a critical consideration in preventing complications of the skin. 

In 1981, John Young and colleagues studied and enumerated the occurrence of complications related to spinal cord injury between 1973-1981. (Young JS, Burns PE, Bowen AM, McCutchen R. Spinal cord injury statistics: experience of the regional spinal cord injury systems. Phoenix, Arizona: Good Samaritan Medical Center, 1982.)  Young had 739 paraplegic and 876 quadriplegic cases in his data base. He noted the number of times complications occurred with each one of the major organ systems during the initial medical rehabilitation period. Among the leading complication were urinary dysfunction, vascular/skin problems, spasms, and pulmonary problems. Complications of the genitourinary system loom so large, because infection is a common complication.

In that same publication, Young also described the incidence of selected medical complications in hospitalized patients. He reported that about 65% of the patients had complications of the urinary tract during the years following injury. Spasms or spasticity occurred in about 19%, pulmonary complications in about 131, and pressure sores in 23%. Other complications were less frequent. There is one point I’d like to make about pressure sores. Decubiti are a very serious and very costly complication. When they occur, it is generally because of ignorance or neglect. And it means that somewhere along the line, the prevention messages and the knowledge that were supposed to have been imparted to an individual during the rehabilitation process were never delivered, never learned, or never used. 

Looking at the spinal cord from the point of view of functional expectations, we see that in the lower region of the spinal cord (i.e., below S1), injuries do not cause much disability with respect to the musculoskeletal system. These individuals are generally able to walk with minimal assistance. They may have some weakness in the hip extensors and plantar flexors, but they are quite functional from a musculoskeletal standpoint. They still have problems with regard to bowel, bladder, and sexual function.

Complications of the skin are extremely important, as I indicated, and they can occur in patients at just about any level. Complications of the urinary tract can also occur at any level, but the complications of the urinary tract at this particular level are generally related to the bladder’s inability to contract. It is flaccid and easily over-distended, and complications can arise from that. Because there are generally no reflexes, straining and Crede’s maneuver are important in trying to effect evacuation and elimination. 

With regard to complications of the urinary tract, Young also developed a table for us which outlined specifically which urinary tract complications were reported e.g calculus kidney/ureter, urinary tract infections, bladder calculus, orchitis and epidedymitis, infection of kidney diabetes, cystitis, disease of ureter. Urinary tract infections are by far and away the greatest of all of these complications. Young counted just those urinary tract infections that were reported. In most cases, that means they were not reported unless the individual was sick. If they had recorded the occurrence of bacteriuria or colonization of the urinary tract (that is, invasion of the urinary tract with bacteria, even though the patient may not have been symptomatic), then probably all of the patients would have been affected. This is a significant issue that must be addressed regarding prevention of urinary tract deterioration in patients with spinal cord injury. 

Ascending the neuraxis (the spinal cord) and considering the next group of injuries, the levels from L4 to S1 can be grouped. In this group, the area that controls bowel, bladder, and sexual function falls below the area of injury. The preservation of reflex emptying of the bladder, though not guaranteed, is likely, as opposed to the former group of patients, whose reflex emptying of the bowel and bladder is abolished. Management focuses on utilization of reflexes to help with elimination. Sometimes the reflexes get in the way and have to be blunted by the use of anticholinergics, and sometimes not. 

These patients still, however, have difficulty with management of bowel and bladder. And because they have the return of sacral reflexes, they often develop a condition which plagues the entire population of individuals with spinal cord injury above the sacral segments —detrusor sphincter dyssynergy. In this condition, instead of working opposite, with the sphincter muscles relaxing while the bladder muscle contracts, they contract at the same time. Complications related to that can occur, particularly if the contraction is sustained for a long time. In this condition, when the bladder contracts, the urine gets down to the point right at the membranous urethra, and the external urethral sphincter within the pelvic floor contracts and shuts off the stream of urine. That can result in the maintenance of a high pressure in the bladder for prolonged periods of time, which can cause complications like hydronephrosis, reflux, and infection of the kidney, which is very serious. 

When it comes to functional mobility, though, these individuals also are quite independent. Because the lesion is low, some of the muscles in the lower extremities do work and can be supplemented by braces or ankle/foot orthoses (AFO), two canes, or crutches. These individuals will be able to walk around with the assistance of these devices. Although they will be unable to stand for prolonged periods, they will not require a wheelchair. 

Moving a bit higher and considering L1 to L3, these patients have even more of a loss of function of leg muscles and loss of sensation in the leg. These individuals will not have the preservation of muscle function as did the group just considered. And even though they will be able to walk with the assistance of knee/ankle/foot orthoses (KAFOs) and crutches for a short distance, a wheelchair is usually also required. Bowel and bladder management for this group generally is the same as for the previous group. 

Patients in the T7 to T12 group usually are able to assume the erect position with enough support. That support will include KAFOs and crutches, but it will not be a functional activity. That is, it will be useful for exercise but not a substitute for the wheelchair. Balance is not sufficient, and their speed of ambulation is not functional. But in a wheelchair, these individuals are perfectly functional with respect to all activities of daily and independent living. They are capable of advanced wheelchair skills, such as popping wheelies and riding up curbs, down to the floor, and back up again. Their bowel and bladder management also relies upon the use of reflexes to effect emptying. They can certainly participate in activities outside the home, such as athletics, and in the work-a-day world. 

Patients with injuries in the TI to T6 area have absolutely normal function of the upper extremities. Because these patients are paraplegics, their upper extremities have not been affected at all. Activities of daily living, such as dressing, eating, bathing, hygiene, and transfers will all be independent. Of course, these expectations are for the “average” otherwise healthy individual who happens to have an injury in this area. If an individual is remarkably obese or has severe pulmonary disease, of course these expectations must be modified. 

These patients may need some devices, such as a foot loop, to help with transfers or positioning~, but by and large they will be independent if their spasticity is not too severe and is manageable. They will be independent wherever they go and can participate in work and leisure activities. Their bowel and bladder management is essentially the same as mentioned earlier. 

When the spinal cord is damaged in the cervical region, the condition is referred to as quadriplegia. I think it’s fair to consider those with C7 and C8 together, but C6 and C5 injuries must be considered independently. In this C7 to C8 group, pulmonary complications are more of a concern. This is where these complications begin to loom ominously because the individuals with impairments or lesions at this level have lost the ability to cough. As you work your way up the neuraxis, the higher you go, the greater the loss of control of truncal balance. And the loss of the effectiveness of the ability to cough also grows gradually greater. 

At the C8 level, there is no innervation of any of the intercostal musculature at all. So the cough is indeed quite ineffective. The respiratory muscles are not innervated, but breathing is accomplished through the diaphragm, which is still innervated from the C3 and C4 area. However, the diaphragm is a muscle of inspiration, not expiration, so it gets air in but air gets out just on the basis on natural recoil of the lung and the thoracic wall. These patients cannot forcefully exhale, as in exercising or particularly in coughing. Because of that decreased ability to cough, they are vulnerable to complications such as atelectasis of entire segments of their lungs. This can be cleared with some vigorous chest physiotherapy and assisted coughing. 

Young detailed the incidence of respiratory complications, and categorized them. Complications such as atelectasis and pneumonia are relatively common, particularly in the quadriplegic population. Phlebitis, also fairly common, occurred in about 15% of patients in both groups. With respect to ambulation and activities of daily living, these patients should generally be independent because there is enough preservation of movement in the upper extremities. C7 patients will have triceps function and, therefore, will be able to assist with their shifting of body weight and transfers; and those with C8 injuries will even have some dexterity in the movement of their hands. They will also be independent in a wheelchair, but more advanced skills, such as the ones discussed earlier, will be difficult. And as far as bladder management, intermittent catheterization, which is a useful means of management for people with paraplegia, becomes a bit difficult for people with lesions at C7 because of the loss of finger dexterity. 

These patients will generally be using orthoses that apply to the upper extremity, and they may use a short opponens. Sometimes an MP Stop will be used for individuals with CS lesions. But, in my experience, many times people just reject these devices at these levels; although some who have a higher gadget tolerance do accept them. 

C6 should be considered as a single level because it is a pivotal region. People with injuries above this level always need so much assistance that they cannot live alone. Individuals with injuries below this level may be able to live alone, although it may not be practical in many instances. At this level, only the very exceptional patients will be able to do so; most will not. They will be partially independent; they will need some assistance. They will often use a reciprocal orthosis, or wrist-driven flexor hinge splint. They will be able to drive a van, but driving a car is only for the very exceptional. And they will have partial independence in the wheelchair. They may need modified hand rims. A power wheelchair is also necessary. At this particular level, two wheelchairs are indicated and are justified. 

There are many reciprocal orthoses for these patients. They depend upon the translation of the dorsiflexion of the hand to close the fingers and the thumb to each other. For those individuals who have not clearly decided whether they would use such an orthosis or who have not even considered this particular aspect of their rehabilitation, mock-up devices can enhance function. If the individual accepts these devices, which are very cheap and easy to make, then the more expensive ones can be prescribed. 

Regarding bladder management, it will be difficult to do intermittent catheterization. For males, procedures to try to achieve voiding at acceptable pressures into external collecting devices are more strongly considered; some males and females may have to accept an indwelling Foley catheter. 

Moving to C5 lesion patients, powered wheelchairs are certainly indicated. Individuals at this level will be partially dependent, but they will be able to do many’ things for themselves as well. Although they will not be able to live alone, some will he able to drive; it depends entirely on just how much shoulder motion and control is present. The orthoses they use are generally fixed-wrist orthoses, or a battery-powered type of orthosis to provide the same type of prehension that the wrist-driven flexor hinge splint does. Intermittent catheterization is not possible, and the indwelling catheter is more often employed. 

For patients with lesions above C5, ventilation must be considered. Ventilation must be provided for patients with Cl and C2 lesions, and for some with C3 lesions. Generally, two portable ventilators are needed, one for the wheelchair and one for the bedside. And the individual can be mobile with the ventilator behind the chair or underneath the chair, along with a battery. There are other options open for this group, such as phrenic nerve stimulators, pneumobelts, and so forth. Bowel and bladder management is essentially the same as with C5 patients. Ambulation is by powered wheelchair, usually with chin control. Some will use sip-and-puff controls; other mechanisms are available. Some people will benefit from mobile arm supports if they have enough shoulder motion left to be able to utilize a mobile arm support. Often, environmental control systems are needed as well, particularly if one is living in a shared, attendant living situation. 

Bear in mind that this discussion has been about expectations based upon individuals with complete spinal cord injury. Nowadays, of course, thanks to improvement in rescue and retrieval and better initial management to prevent such complications as hypotension and hypoxia, we are seeing a higher incidence of incomplete lesions. Some of these incomplete lesion patients will show some recovery, maybe not to the point where they’re perfectly normal, but to the point that they may be able to walk. We don’t need to have 100% of restoration of function, or function of the fibers within the spinal cord, to be able to walk. 

Finally, I’m going to conclude by discussing a collaborative study done in Australia by Ed Carter, John Young, Sir George Bedbrook, and, me in which we looked at the incidence of complications of spinal cord injury—those complications or secondary disabilities which would impair reaching the anticipated goals.(2) 

We looked at patient management in Australia, where treatment is all done in one place, the capture rate is 100%, and all patients are treated comprehensively, along the lines generally accepted for individuals with spinal cord injury. We compared them against what could be considered a nonsystem protocol. Those patients were managed acutely outside the model systems and entered the model system between days 1 and 15, days 16 and 30, days 31 and 45, or days 46 and 60. We looked at what complications they had when they came into the system. (They developed a few complications within the system, too, but we did not consider those complications.) 

We considered the effect of delay (in referring the patient to a spinal cord center) on the incidence of these complications. With urinary tract infection, if patients enter a center early, the incidence is low, but the incidence increases substantially as the delay increases. The incidence of decubitus ulcers also increases, and this incidence grows larger as the patient delays entering a model system of care. Other complications generally follow the same trend. 

In contrast, for those individuals admitted to the Royal Perth Rehabilitation Hospital on the first day of their injury, as most spinal injured persons are, we looked at the complications that developed while they remained in that hospital over the same time frame. Urinary tract infections do occur—maybe it’s just a complication that even under the best of circumstances cannot be prevented —but the incidence is lower. Decubitus ulcers are, however, prevented, and respiratory complications are minimized. 

References

1. Young JS, Burns FE, Bowen AM, McCutchen R. Spinal cord injury statistics: experience of the regional spinal cord injury systems. Phoenix, Arizona: Good Samaritan Medical Center,1982.

2. Donovan WH, Carter RE, Bedbrook GM, Young JS, Griffiths ER. Incidence of medical complications in spinal cord injury: patients in specialized, compared with non-specialized centers. Paraplegia I984;22:282-90.

Injury Interventions in Public Health Practice

M. Patricia West, M.S.W. and Richard Hoffman, M.D.
Colorado Department of Health, Denver, Colorado. 

Ms. West: The fact that this colloquium is being hosted by the CDC deserves some review of history. As earlier speakers have pointed out, the application of scientific study to the field of injury prevention over the past 15 years has produced a foundation of knowledge. We now understand that injuries are predictable and, therefore, preventable. But society’s attitudes have not changed. Most people regard injuries as accidents—acts of God or fate which just happen; they are not predictable or preventable. This perspective is the result of looking at a single event or anecdote instead of all the events in a population. Part of the role of public health is to communicate risk effectively —to expand the view of the total population, to move people from basing their choices or behaviors on their own anecdotes to a larger picture. 

My job here is to talk about injury interventions in public health. I view the public health role in injury prevention in Colorado as the translation of research findings into action at the community level. 

There are five components, and the first is studying the numbers, very basically. This is the “who, what, why, when, how, and where” of the problem. We conducted a baseline study on injury in Colorado.1 Injury deaths and injury hospitalizations by E-coded cause are given for about 2,100 deaths and 14,000 injury hospitalizations from July 1986 through June 1987. For those of you who know much about data on the things that kill us from injuries, you know that about 50% of unintentional injury fatalities are caused by the automobile, another 50% by other unintentional injuries. There is another group of fatalities caused by intentional injuries, such as suicide and homicide. 

With nonfatal injury hospitalizations, unintentional injuries are responsible for 60% of the hospitalizations, intentional injuries account for 20%, and motor vehicle crashes account for only 18% —pointing out that the things that kill us are not necessarily the things that hospitalize us. Death rates are compared with hospitalization rates by leading causes, for 100,000 persons in Colorado for the same period of time July 1986 through June 1987) for the age group 15 to 24 years. It shows that, as you look at this specific age group, the 15- to 24-year-olds, there is a vast difference between the death rates by leading cause and the hospitalization rates for these same leading causes, If you look at the leading causes of death for this age group, motor vehicles are first, suicides are second, and assaults are third. The leading cause of hospitalizations is actually suicide attempts; second is motor vehicle occupant injuries. In designing prevention strategies, it is important to understand two points. First, injury deaths are relatively rare events. For every death in Colorado, there are 16 injury hospitalizations. Second, for nonfatal injuries, the leading cause in the 15- to 24-year-old age group is suicide attempts. 

First we look at the data; and second we try to determine how to control the problem using both primary and secondary interventions. Third, we create a plan based on that data. The fourth step is finding, developing, and/or training people who can implement that plan at a community level in a pilot project. The fifth step is to actually evaluate, modify, and disseminate that information on injury to others. 

I’d like to introduce Dr. Richard Hoffman, the State Epidemiologist in Colorado, who is going to describe examples of current injury surveillance data and what we have been doing with these data in Colorado. 

Dr. Hoffman: Why is the State health department involved in injury control? What can the health department offer or bring to the injury prevention table—a table that is already crowded with support groups, rehabilitation experts, research scientists and safety and traffic regulators? 

I am attending this meeting to find out how to make the State health department relevant and how to use its resources to serve its constituents best. This is what a State health department and its epidemiologists usually do:

• Measure the amount of disease in a community and report this to the community.
• Prevent disease by offering services in response to case reports.
• Control epidemics by using knowledge of disease epidemiology to interrupt transmission.
• Disseminate educational materials to targeted audiences.

What the health department does not usually do is:

• Regulate or enforce seatbelt use.
• Enforce driving under the influence laws.
• Perform long-term research or follow-up studies.

With these State health department roles in mind, is that agency equipped to prevent primary and secondary disabilities? Are we using the best conceptual framework to prevent spinal cord injuries? What are the elements of an infrastructure that the health department can use to effect disability prevention? I think there are four primary elements that make a health department a legitimate actor in injury control: 

• A legal basis for surveillance and intervention.
• Stable funding, generally using some local general tax-revenue sources.
• Trained personnel in adequate numbers.
• A data-base intervention, often including responses to individual case reports.

What resources are needed to carry out epidemiologic surveillance? The communicable disease model is helpful in determining those resources. Each year, several thousand cases of communicable disease are reported to the State health department. Each patient is reported by name, age, sex, address, and date of onset. To compile and maintain this data base requires about one full-time equivalent (FTE) employee; however, to interview each patient and investigate each case and obtain medical information, a work history, and an exposure history would require several more employees. And this would not include the different response, disease control, or intervention arms of the State or local health departments. We respond to individual cases of communicable diseases, such as HIV (human immunodeficiency virus) infection, with partner notification, and to certain occupational diseases, such as asthma, with on-site industrial hygiene evaluations. But for individual reports of traumatic brain injury or disabilities secondary to spinal cord injury, there is not vet a well-defined public health response. 

Performing such an investigation is labor-intensive. One FTE employee can handle somewhere between 10 and a few hundred cases per year, but not thousands. As for long-term, repeated follow-up of investigated cases—such as would be needed to study secondary disabilities of spinal cord injured persons—even more resources would be needed. For most communicable diseases, there is a longstanding infrastructure involving Federal, State, and local health agencies, as well as infection control practitioners and school nurses. I think different institutions and agencies may be needed for injury control and disability prevention. 

In Colorado, the Board of Health has examined our statute regarding the detection, monitoring, and prevention of environmental and chronic diseases and has decided that certain injuries fit the statutory definition of “chronic disease.” Spinal cord injuries meet that definition, and so the board has made spinal cord injury a mandatory reportable condition. This allows named reporting of cases without first obtaining a patient’s consent. This permits better recognition of the complete spectrum of spinal cord injury and the magnitude of the problem. However, rarely does the health department have the resources to conduct follow-up surveillance of persons with spinal cord injury to determine the rates of secondary disabilities. For this type of study, the health agency must obtain consent from the patient to turn his or her name over to another research group. 

In Colorado, we are developing ways of responding to individual case reports. That is important because the legislature and the board of health do not believe it is necessary to collect names unless there is a response to each reported case. If our goal is to develop an epidemiologic/surveillance-based infrastructure for intervention, then we need to make the case for such with the legislature. 

Since 1986, we have had a Spinal Cord Injury Early Notification System, which provides information to each injured person on issues such as funding and entitlement programs, social services, post acute care options, the rehabilitation process, the phenomenon of spinal cord injuries, and local support programs. We are developing a program to prevent secondary disabilities using public health nurses in Colorado Springs. These activities are supported by Federal funds, and I hope that they help generate State and local support for injury prevention. 

How else can we use surveillance data to prevent disease? The usual injury prevention schemes call for environmental or design modifications, legislative change, or behavior modification. I think surveillance data can contribute to those schemes in several ways. Generally, surveillance data (i.e., reported cases) represent numerators. The population at risk (denominator) must be added to the equation to calculate a rate and make the best scientific decision. The denominator maybe the total population or it may be selected subgroups. Surveillance data may be useful in the following ways: 

• Evaluating interventions by measuring disease occurrence before and after intervention.

• Generating ideas for interventions. In this sense, I believe the health department will he most successful when it identifies small clusters of injuries, such as diving-related spinal cord injuries, rather than taking on large causes of injuries, such as motor-vehicle crashes, which already have many persons and agencies working on them.

• Identifying persons for case-control studies designed to measure the risk of developing disease or to measure risk factors.

• Identifying injured persons or subgroups for long-term follow-up studies, such as would be required to determine the epidemiology of secondary disabilities. 

Surveillance data might also be useful to help correlate the availability of health care services to persons with spinal cord injuries and the rates of secondary disabilities or to design studies comparing health care outcomes in various hospitals. 

In summary, it is not totally clear what the public health department intervention program for spinal cord injury should look like or how the optimal infrastructure should be constructed. I hope this colloquium will provide ideas so that our injury prevention programs will be community/constituency- driven, will be relevant and useful, and will be more than simply the communicable disease control model repainted with injury control colors. With the CDC grant for disabilities prevention, we have been given a few years to develop a program. We want to make our program useful to enough people in Colorado so that there will result a constituency that can influence State legislators to put in place the infrastructure for a long-term public health program to prevent spinal cord injury. 

Ms. West: One of the things we’re trying to communicate to you is that part of the responsibility for injury intervention in public health is marketing. Now that might sound a little strange to you, but there’s an old adage that says, “You cannot sell what you do not have,” and for many parts of injury prevention, we lack knowledge about an effective intervention. “But,” the adage continues, “you’ll never sell what others don’t want.” Injury prevention sometimes means, at best, selling ideas to people who don’t know they need a product, such as seatbelts. At worst, it may mean they don’t want the product, and a good example of that is motorcycle helmets. In Colorado, we had a very bloody battle about that last year, and we lost roundly. The legislators said, “Don’t come back this year.” And we won’t, until we have a better, more effective coalition at the community level. 

Injury prevention involves marketing. We have to understand better what it means to prevent injuries, to create long-term lasting change. Larry Cohen in Contra Costa County, California, has created a spectrum of prevention efforts. It’s important for us all to understand that this is a multidimensional framework. To do prevention effectively, you need to build individual knowledge; promote community education; educate, in our case, health care providers; foster coalitions and networks; change organizational practices; and influence policy and legislation. And if you’re only doing one of those, the change won’t last long. To summarize what he’s saving, effective prevention includes both education of individuals and communities; it includes technological and engineering changes; and it includes policy and regulatory changes.

We used an adaptation of a community-wide prevention planning tool created by David Altman at the Stanford Health Promotion Resource Center. If you’re doing a community-wide program, you will have persistent change in only about 20% of your target population. If you were trying to get seatbelt use in 80% of your population, you would fight long and hard to accomplish that, and it’s probably an unrealistic short-term goal. This concept, called attenuation, described by Elizabeth McLaughlin and her colleagues in burn prevention work in Massachusetts, is an important one that we all need to understand when we’re talking about community injury prevention. 

But that brings us to the concept that no one discipline owns this field of injury prevention, and Dr. Hoffman related this to you very dearly when he was talking about all of the different groups out there that have been involved in injury prevention for a long time. This includes groups like the National Safety Council, the Red Cross, and many staffs of your rehabilitation centers, which for many years have recognized that there was a lot to be done in the field of prevention. Public health, in many ways, is the new kid on the block. 

As that new kid, public health must respect the history of commitment and expertise of those who have come to the podium before us. Additionally, we must be sensitive to advocating our emphasis on primary prevention. It is only part of a larger program of disability prevention. Sometimes, however, injury prevention programs or safety programs that have been in place nationally are based on sound ideas but are not necessarily based on local surveillance or data analysis or any knowledge of whether the program accomplished a measurable decrease in the targeted injuries. Public health brings a scientific base of data and evaluation to the field of injury prevention.

Lastly, I want to talk about projects that had been particularly effective and successful, and those which haven’t shown results. Sylvia Michik, in her North County Health Services Program in California, has done a good job of relating to us the importance of targeting. And as she said, the successful programs have been careful to target their efforts; they have dealt with specific injury types, such as motor vehicle passenger injuries, in a specific population, using a specific intervention, and specific strategies implemented by very particular individuals or agencies. In a paper that she presented in 1988, she defined examples of successful programs based on these principles of targeting, such as a 30% decrease in motorcycle deaths by requiring the use of helmets through legislation. A 30% decrease: that’s pretty monumental.

There has been an 80% reduction in aspirin deaths in children under the age of 4 through the use of child-resistant packaging. Infant strangulation deaths have been reduced by changing the spacing between crib slats. Those were programs that were finely targeted and for which we could measure the results and evaluate their effectiveness. 

Examples of unsuccessful programs are the “Don’t drink and drive” and “Just say no” public service campaigns. These are targeted messages, but they have an untargeted audience; they’re supposed to be affecting the total population. We know that you don’t affect the total population with one message. Other examples, such as, the “Lock up your poisons” and “Supervise your children in the kitchen” campaigns, are messages that have consumed substantial numbers of very scarce resources and were unsuccessful. A final example is poison prevention education programs that target school-age children. When we look at the data, we find that 80% of poisoning injuries occur to children under 4 years of age. So when you’re putting those dollars into school-age children, you’ve missed your target population.

In conclusion, the most elegant research is worth much less without a mechanism to translate those scientific findings into targeted action. One function of public health is to make the connection between those studying the problem and U.S. communities that are poised to implement programs.

Our goal is to prevent injuries, but it requires shifting societal attitudes from the concept of accident to the concept of injury; from an act of God, to an understandable, predictable, and therefore preventable event. To accomplish this very broad, untargeted goal requires access to good surveillance data and targeted, focused action by many diverse groups, such as this audience. 

Reference

1. Colorado Department of Health. Injury in Colorado, Baseline Analysis, 1989. Denver: Colorado Department of Health, 1989. 

Setting the Conceptual Landscape

Marcus J. Fuhrer, Ph.D., Professor, Department of Rehabilitation, Baylor College of Medicine and Vice President for Research, The Institute for Rehabilitation and Research, Houston, Texas. 

This is an extraordinary meeting—one reason being the extraordinary diversity of the perspectives being brought to bear on the subject of secondary conditions of persons with spinal cord injury. I feel a great sense of responsibility, therefore, in attempting to provide some notions that will be of assistance to you as you participate in your workgroups. In this presentation, I propose to sharpen our focus on the charges given us; suggest some terminology that will help us in communicating with one another; and propose three interrelated perspectives for thinking about the secondary conditions, or what I’ll recommend later we term, the secondary impairments, of spinal cord injury. 

Terminology - As I indicated at the onset, our collective strength is the variety of backgrounds that we represent. A hazard of that diversity, however, is that we will use key words differently and, thus, will have difficulties in communicating. So bear with me as I discuss the matter of terminology. 

The preparatory material for this colloquium states that the purpose is to assess the state of the art in the development of strategies, interventions, and methodologies to prevent secondary disabilities in people with spinal cord injury. Other pieces of orienting material use the terms complications, health complications, secondary complications, or secondary disabilities of spinal cord injuries. It’s useful to examine each of those terms. 

According to half-dozen or so medical dictionaries, the common meaning of complication is a pathological condition that appears in the course of another pathological condition and may or may not be the result of that condition. For our purposes, the condition that has already been diagnosed is, of course, spinal cord injury. As an aside, we might note that this definition allows us to consider spinal cord injury as a complication of some other diagnosed condition, such as alcoholism; but that’s the subject for another colloquium. It’s important to note that the definition of complication is explicitly unrestrictive regarding whether the newly emergent disorder is causally related to the primary condition. Therefore, from that standpoint, an acute hearing loss is no less a complication of spinal cord injury than is autonomic dysreflexia. 

Given the definition of complication, it is both redundant and potentially confusing to use the combined terms secondary complications or health complications, so I suggest that we expunge them from our vocabulary. In an influential article, Michael Marge has used another term, secondary disability.’ Its definition is very similar to that of complication, but the qualification is added that the secondary pathological condition is to be chronic, that is, of long duration. So now we have two major options: first, whether to consider only those secondary conditions that are chronic and second, whether to consider all secondary conditions, including those unrelated causally to the spinal cord injury. 

My recommendations are that we devote our attention predominantly to secondary conditions whose causation is at least partially attributable to the spinal cord injury itself but that we do not wholly neglect those secondary conditions that seem to be causally independent of the injury. Even for a secondary condition to which cord injury does not make a causal contribution, the disabling and handicapping consequences of the injury may alter the secondary condition’s manifestations and its response to treatment. I suggest, too, that we emphasize secondary conditions that are chronic, but not wholly neglect acute, potentially reversible conditions, because they can also have devastating consequences in the lives of the people we’re considering. 

I will use the term secondary impairment to focus our deliberations. By that term I simply mean any loss or abnormality—anatomical, physiological, or psychological—that occurs in an individual with preexisting impairments. For our purposes, the latter are due to spinal cord injury. 

Three Perspectives on Secondary Impairments -I want to illuminate the subject of the secondary impairments of spinal cord injury from three different perspectives. My hope is that this triad of perspectives will be helpful as you consider the specific impairments that constitute the focus of your workgroups. 

The three perspectives are the principal characteristics of secondary impairments, the interventions aimed at preventing secondary impairments, and the service-delivery implications of preventing secondary impairments. 

What follows is not an exercise in making all possible distinctions, but rather in providing a conceptual structure for understanding the nature of any secondary impairment. The effectiveness of the preventive measures we choose depends a great deal on the soundness of that understanding. This paradigm is indebted to the work of Saad Nagi, Phillip Wood, and their collaborators. (2)(3) For those of you who have been closely following their conceptual contributions, I shall only point out that I’m borrowing the principal constructs that the two share. I’m not endorsing many of the elaborations that have arisen—for example, the hardly workable International Classification of Impairments, Disabilities, and Handicaps.4 I do recommend that we use the terminology, the verbal labels, that Phillip Wood uses because of that terminology’s increasingly widespread usage in the literature. 

First, I want to familiarize you with how spinal cord injury itself is understood according to this paradigm (Figure 1). The active pathology of spinal cord injury takes the form of disruption of the structural and functional integrity of the spinal cord, which is caused by trauma of some sort. Assuming the person survives, he or she may be left with impairments that take the form, for example, of paralysis, loss of sensation, or disruption of autonomic functioning. 

Those impairments are likely to result in disability, reflected by difficulties in performing basic activities of living, such as getting out of bed, feeding oneself, dressing, or ambulating. In turn, disability may result in handicap, which refers to limitations in performing roles in society, such as working, pursuing an education, or parenting. 

I believe there is a consequence of impairments, disabilities, and handicaps that needs to be added to the Nagi-Wood system; it is the diminution of subjective well-being, exemplified by a poorer self-assessed quality of life, by less optimism regarding the future, or by less expressed satisfaction with living. Lastly, the degree to which impairment produces disability, disability produces handicap, and either of them produces diminished subjective well-being is certainly influenced strongly by a host of moderating factors such as the person’s social support, access to services, or stage of life. 

Secondary impairment begins with the occurrence of active pathology, which may have a variety of etiologies, including trauma, a biochemical imbalance, or an infectious agent. The pathology has a natural history, which, as Melvin and Nagi point out, includes efforts of the organism to restore normality.(5) Potentially important features of that natural history include the pathology’s rate of progression and its amenability to therapeutic intervention. If the pathology does not remit spontaneously or is not reversed by some therapeutic intervention or if the individual survives the pathology, a secondary impairment may result. 

Several features of secondary impairments should be understood. First, note that although every pathological condition is associated with an impairment, some impairments are independent of pathology. The latter include residual abnormalities that continue after the pathological condition has been controlled or eliminated. An example is the amputation of a limb following a severe burn. Another feature of secondary impairments is that different pathological conditions may result in the same impairment. Limb weakness, for example, may result from primary muscle disease, nerve damage, or both. 

The characteristics of secondary impairments are describable in at least three important ways: objectively, subjectively, and in terms of their natural history, in particular, their reversibility. 

Objectively, secondary impairments can be described in terms of their structure at the gross anatomical, cellular, or subcellular level; by the biochemical mechanisms involved; or by the pathophysiological and compensatory physiological processes that occur. These manifestations constitute the pathological signs to which the clinician responds. Secondary impairments can also be described objectively in epidemiologic terms (for example, with regard to their population incidence, prevalence and geographic distribution). 

Some secondary impairments may also be described phenomenologically (i.e., as experienced by the person to whom they are happening). Clinically, that refers to the symptoms of the impairments. 

The possible consequences of secondary impairments are disability, handicap, and diminished subjective well-being. Some secondary impairments—not all—may result in disability, which is a restriction of the person’s ability to perform an activity in a manner considered normal for him or her (for example, the activities of everyday life that include getting out of bed, toileting, dressing and feeding oneself, and writing). 

Disabilities have four features of particular note. First, in considering the relationship between secondary impairments and disabilities, it should be noted that not all secondary impairments lead to disabilities: for example, when the severity of the impairment is not very great. Second, different secondary impairments may result in the same disability. For instance, the disability of having difficulty climbing stairs~ may result from muscular weakness or from an equilibrium disturbance. Third, a frequent consequence of disability is dependence on others to perform common activities of daily living. Thus emerge some of the social costs of disability. And fourth, identical impairments in different people may result in different degrees of disability —hence the importance of moderating variables such as people’s preexisting health or age. 

Before moving on, an additional comment on terminology is warranted. Because of the specific meaning assigned to the term disability in this conceptual system, the combined term secondary disability should not be casually interchanged with the term complication. 

Some disabilities may lead to handicap, when handicaps are understood to mean limitations in the person’s fulfillment of the social roles expected for persons of his or her particular age, gender, and sociocultural milieu. The roles include those relevant to family, work, and school. For example, a paraplegic who has been a job holder for years may lapse into unemployment (a handicap) after a cerebral embolism (the pathology) results in upper limb weakness (a secondary impairment), which hampers that person’s wheelchair mobility (a disability). Active pathology, impairment, disabilities, and handicaps may well have the consequence of diminishing the individual’s sense of subjective well-being. Here we consider the interior person and his or her decreased satisfaction with living, lower self-assessed quality of life, diminished sense of control over life events, and reduced optimism regarding the future. Again, this set of consequences is in addition to the preceding ones identified by Wood and Nagi, and I think it is an important set. 

The last component to be discussed in this paradigm of secondary disability is moderating factors. Their importance cannot be overemphasized. Formally considered, a moderating factor is a variable whose level determines the direction or degree of relationship between two other variables. For example, whether or not flu virus results in a full-blown flu syndrome may depend on the person’s state of general health, in which case the state of health would be a moderating factor. 

Some of the most important moderating variables pertain to the consequences of spinal cord injury itself. The impairments, disabilities, and handicaps that exist because of the spinal cord injury are initial conditions for the active pathology that results in secondary impairments. Particularly striking in this connection are the findings of Nancy Crewe and her collaborators, who found that persons with spinal cord injury who exhibited greater handicap in terms of poorer vocational adjustment and less social involvement were less likely to be alive 10 years after injury than were persons who were better adjusted vocationally and socially.(6) Those findings raise the possibility that a handicap may moderate people’s susceptibility to particular life-threatening impairments, enhancing or diminishing the likelihood of death. 

A host of other moderating factors, not directly associated with injury, are important as well. Included are the person’s gender, life stage, adequacy of social support, and access to services. These and other moderating factors interact with the secondary impairments to produce consequences—reflected in new disability or handicap—that are different from the consequences the person would suffer if the spinal cord injury did not exist. Expressed concretely, a stroke, amputation, or limb fracture in a person with spinal cord injury is a different phenomenon from the same impairment in an able bodied person. However, we have a very poor understanding of what the differences are for most of the secondary impairments of persons with spinal cord injury. 

In considering preventive interventions for secondary impairments, we must presuppose that the best possible information is available regarding the nature of secondary impairments in order to judge accurately the timing, content, and likely outcomes of the interventions. 

The different possible goals for preventive interventions are conveyed by three relevant public health terms: primary, secondary, and tertiary prevention. Primary prevention is aimed at precluding a condition from beginning. If our efforts are successful, for example, in getting people not to dive into shallow water and injure their spinal cords, we have contributed to the primary prevention of spinal cord injury itself. Secondary prevention is aimed at identifying and treating people who are experiencing potentially reversible impairments. For example, a grade-I pressure sore that is treated quickly so lasting skin damage is avoided. Tertiary prevention is aimed at minimizing the consequences of impairments. Much of what we do to rehabilitate persons with spinal cord injury and maximize independent living skills can be labeled tertiary prevention. 

Tertiary prevention need not be targeted to impairments alone. Among the ways tertiary prevention can be accomplished at the level of handicap, for example, is to assure that severely disabled people have their personal care assistance needs met so they are able to perform roles such as being a reliable member of the work force. In other words, the social isolation, institutionalization, and demoralization that are often endpoints of the etiologic chain we’ve been tracing can potentially be prevented by intervening effectively at any of the preceding stages of the disablement process. 

For most secondary impairments, it can be assumed that the earlier we treat them, the more likely we are to halt their progression or reverse them. This puts a priority on early detection and on cost-effective means of surveillance. 

For some secondary impairments, especially those directly related to the spinal cord injury, preventing an impairment from recurring after it has occurred one or more times is particularly important. Consider, for example, the person who has experienced one or more skin breakdowns or severe urinary tract infections. Such persons are at particularly high risk for a repeat of the condition. Other things being equal, it is sometimes more cost-effective to direct our preventive efforts toward people who have suffered a secondary impairment one or more times than toward everyone who is at risk for that impairment. 

Preventive intervention may be somatically oriented; educationally, behaviorally, or counseling oriented; or environmentally oriented. Somatically oriented interventions cover the gamut of contemporary medical technology: surgical, pharmacological, and physiotherapeutic, as well as applications of rehabilitation engineering. We have available for consideration a legion of interventions that have proven successful in preventing given impairments in patients with disorders other than spinal cord injury. For example, several different medication regimens can be adapted and then used to prevent urinary tract infections that lead to kidney deterioration. The key words are adaptation and interaction. Most somatic interventions must be adapted to take into account their interaction with alterations of the person’s physiological, biological, and chemical makeup that are due to the spinal cord injury. Interactions with concurrent interventions must also be considered, especially when we bear in mind the many medications people with spinal cord injury may be taking. Again, these interactions exemplify moderating factors, in particular the influence of the concomitants of the preexisting spinal cord injury on the secondary impairment and its treatment. 

The common denominator of educationally, behaviorally, or counseling oriented interventions is that their effects are mediated by the thinking, feeling human being with spinal cord injury. At this level, our concern is often with providing the person with the information needed for prevention, with skills that translate that knowledge into effective daily practices, with the conviction that prevention can be effective, and with a sense of self-worth required to feel that all the effort is worthwhile. For some of us, those objectives are encapsulated in the goal of empowering people to take responsibility for their own lives. 

Increasingly, the challenge is one of reeducation. As we make greater efforts to meet the needs of people who were injured many years ago, we recognize the importance of updating their knowledge of preventive practices, many of which were formerly unknown. As highlighted by the writing of Roberta Treischmann and Bob Menter, that mission is part of a larger one concerned with meeting the needs of people with a spinal cord injury who are aging.(7)(8) 

Other preventive interventions must be directed to the environment. Some of our attention, indeed, must be focused on the physical environment and its barriers: the curbs, doorways, and stairways within our communities. Human features of the environment, however, have the highest priority for intervention. One objective is to assist persons with spinal cord injury to receive the tangible and emotional support the~’ need from others. Another is changing an attitudinal environment that may reflect condescension and stereotyped perceptions. 

The third, and last, perspective on secondary disabilities is their service delivers’ implications. Social institutions—such as hospitals, independent living centers, and government agencies—all play potentially important roles in preventing secondary impairments. These institutions exist in a milieu of social policies, economic forces, and political factors that cannot be ignored. The number and variety of services required by persons with spinal cord injury dictate the utter necessity of networking and coordination among the many programs and agencies that are potential resources for these persons.

An outstanding accomplishment of the last 25 years has been the demonstration of the benefits of a service system for persons with newly incurred spinal cord injury. This achievement reflects the efforts of the Model Spinal Cord Injury Systems, supported by the National Institute on Disability and Rehabilitation Research. The primary aim of the 13 existing systems is to assure the continuity, timeliness, and appropriateness of services that begin at the accident scene and continue after the person has completed inpatient rehabilitation and has resumed life in the community. 

As indicated in the writings of Gerben Dejong and Bob Griss, manifold forces are operating today that in aggregate are jeopardizing the availability, comprehensiveness, and continuity of services for persons with spinal cord injury.9’10 Many of those threats are related to consequences—both intended and unintended—of how health services are currently being reimbursed. Marginally capable rehabilitation units within general hospitals are proliferating, and sponsorship pressures are progressively compressing the duration of inpatient rehabilitation for patients with recent spinal cord injury. 

Those erosive influences place a premium on finding new ways to achieve effective cooperation among agencies and programs serving persons with spinal cord injury and on undertaking new strategies aimed at preventing secondary impairments and their consequences. 

The new strategic possibilities we are challenged to examine are in terms of public health viewpoints and resources. This strategy’s emergence is due to the effective advocacy of the National Council on Disability. Recommendations on fleshing out that strategy are, of course, a prime purpose of this colloquium. However, thanks to the writings of Vernon Houk, Tom Seekins, and their colleagues, at least some of the possibilities have already been envisioned.(11)(12) One possibility is to exploit the expertise of State departments of public health in operating surveillance systems in order to identify needs for services, facilitate access to appropriate services, and evaluate the efficacy of services. 

A second possibility is inherent in the traditional public health emphasis on public education. By that means, for example, it may be possible to bring prevention-oriented information to persons with spinal cord injury who are sometimes far out of reach of rehabilitation programs or independent living centers. 

Future Research - One of the expressed goals for this colloquium is to answer the question, Which areas require research? We might wish to answer, “all areas.” But that would not really be helpful in view of the massive existing constraints on available financial support for research. A responsible answer must suggest priorities about which project should be funded first, and which should be funded later. 

In considering such priorities, I urge that we not limit our attention solely to the development of new, exciting, untried preventive interventions. We also need to assign priority to research that evaluates the effectiveness of some older, widely employed practices that have escaped rigorous assessment. The universe of programs and services for persons with spinal cord injury is rife with examples of practices that rest wholly on individual practitioner experience, local program conventions, or the pronouncements of ostensible authorities, rather than on solid, research-based evidence. 

Many of our most cherished clinical convictions, too, require rigorous empirical scrutiny (for example, the widely shared expectation regarding benefits of various health promotion practices for preventing secondary impairments). Such practices include nutrition, exercise, and stress management regimens. Notwithstanding their appeal a priori, systematic, research-based evidence for the preventive efficacy of most of those regimens is lacking for many secondary impairments. 

To conclude, in the program for this colloquium, my presentation was entitled, “Setting the Conceptual Landscape.” That landscape has turned out to be shrouded in darkness. I trust our deliberations during the next 2 days will go far in replacing that darkness with light. Thank you. 

References

1. Marge M. Health promotion for persons with disabilities: moving beyond rehabilitation. Amer J Health Promotion 1988;2:29- 35.

2. Nagi SZ. An epidemiology of disability among adults in the United States. Milbank Memorial Fund 1976;54:439-67.

3. Wood PHN, Badley EM. People with disabilities: toward acquiring information which reflects more sensitively their problems and needs. New York: World Rehabilitation Fund,1980.

4. World Health Organization. International classification of impairments, disabilities, and handicaps: a manual of classification relating to the consequences of disease. Geneva: World Health Organization, 1980.

5. Melvin JL, Nagi SZ. Factors in behavioral responses to impairments. Arch Phys Med Rehab 1970;51:552-7.

6. Krause JS, Crewe NM. Prediction of long-term survival of persons with spinal cord injury: an 11-year prospective study. Rehab Psychol 1987; 32:205-13.

7. Treischmann R. Aging with a disability. New York: Demos, 1987.

8. Menter R. Aging and spinal cord injury: is there a faster decline? In: Mattox S, ed. Spinal network. Boulder, Colorado: Spinal Network, 1987:77-9.

9. DeJong G. Medical rehabilitation outcome measurement in a changing health care market. In: Fuhrer MJ, ed. Rehabilitation outcomes: analysis and measurement. Baltimore, Maryland: Brookes, 1987:261-71.

10. Griss R. Measuring the health insurance needs of persons with disabilities and chronic illness. Access to Health Care 1988;1:1-64.

11. Honk VN, Thacker SB. The Centers for Disease Control program to prevent primary and secondary disabilities in the United States. Public Health Rep

1989;104:226-31.

12. Seekins 1, Smith NJ, McCleary T, Clay J, Walsh JA. Secondary disability prevention: involving consumers in the development of policy and program options. J Disability Policy Stud 1990 (in press).

REPORTS FROM THE WORKGROUPS (20 pages)

Cardiovascular-Cardiopulmonary Secondary Disabilities

Case Definition - Spinal cord injuries result in sudden and drastic changes in the health status and lifestyle of those injured and lead to a loss of health and fitness and to an increased risk for secondary cardiovascular-cardiopulmonary (CV-CP) disabilities Among patients with high-level lesions, paralysis of intercostal and abdominal muscles can severely limit pulmonary ventilation and the ability to cough, which increases the probability of developing life-threatening pulmonary problems. Furthermore, immobilization of the lower limbs may also precipitate venous stasis, blood pooling, and edema due to inactivity of the venous muscle pump. This situation may lead to deep venous thrombosis (DVT) and pulmonary embolism. 

A diminished sympathetic autonomic nervous system (ANS) outflow can limit the ability of a person with a spinal cord injury (SCI) to exercise; sympathetic stimulation is required to stimulate that person’s normal cardiovascular reflex responses. These reflexes normally augment blood flow to metabolically active skeletal muscles to provide more O~ and fuel substrates while increasing the rate of metabolic end-product removal. Such responses include the following: vasoconstriction of relatively inactive tissues (e.g., gut, kidneys, ~.kin), vasodilation of skeletal muscle arterioles, venoconstriction (which facilitates venous return), and increases in heart rate, myocardial contractility, stroke volume, and cardiac output.L2 Although these reflexes are absent to varying degrees in most persons with SCI, in those with lesions above TI, all sympathetic nerves that innervate the heart (from T1-T4) have interruptions, which limit cardioacccleration, myocardial contractility, stroke volume, and cardiac output significantly . With this condition, any cardioacceleration that occurs with exercise may be primarily due to withdrawal of vagal parasympathetic tone to the S-A node. In addition, reduced sympathetic outflow due to spinal injuries will probably impair the thermoregulatorv capacity of the person with SCI because of inappropriate blood flow distribution and insufficient sweating response below the level to the lesion. 

Although wheelchairs can help in the rehabilitation process by permitting more independence, arm fatigue while operating a wheelchair and exercising discourages many wheelchair users from leading active lives. Unfortunately, a sedentary lifestyle decreases physical fitness and functional capacity further. Specific exercise programs are needed to break the vicious cycle of sedentary lifestyle and loss of fitness and to increase the chances of a person with SCI being rehabilitated.”2 By incorporating specialized medical procedures as well as by making appropriate Lifestyle changes (including no smoking, proper diet, and regular exercise), a person with SCI can avoid or alleviate some secondary CV-CP problems. These changes may also reduce the cost of health care substantially. 

Many secondary CV-CP disabilities that are due to spinal injuries probably stem from skeletal muscle paralysis and the loss of ANS sympathetic function. This situation reduces a person’s work and exercise capability and, typically, leads to a sedentary lifestyle. Some of the secondary problems that the group discussed include loss of cardiopulmonary (aerobic) fitness, excessive muscular and cardiopulmonary stresses, rapid onset of fatigue when working or operating a manual wheelchair, increased risk factors for coronary heart disease (CHD), blood pooling in the lower extremities, peripheral edema, deep venous thrombosis, pulmonary embolism, autonomic dysreflexia (hyperreflexia), blood pressure problems, difficult breathing (in persons with high-level SCI), impaired ability to cough (in persons with midthoracic and higher SCI), aspiration or swallowing problems, loss of pulmonary compliance or fibrosis, pneumonia, inappropriate nutrition (obesity or malnutrition), and poor lifestyle habits (smoking and alcohol or illicit drug use). 

Epidemiology - In the United States, there are currently more than 150,000 persons with SCI., and each year about 10,000 more persons receive a spinal cord injury.(4) Most spinal injuries occur during motor vehicle crashes (more than 38%), sports or physical activities, and the commission of crimes.(4)(5) Before World War II, 80% of persons with SCI died within 3 years of injury, primarily because of kidney and pulmonary infections.(6)(7) With the advent of antibiotic drugs and advances in surgical techniques, paraplegic persons have a near-normal life expectancy. For example, persons with quadriplegia tend to have a life expectancy that is about 10% lower than able bodied people.(8) Generally, the greater a person’s age when injured, the higher the level of injury, and the more complete the lesion, the lower the life expectancy.(9) At present, the most common causes of death in persons with long-term SCI are related to a variety of CV-CP disorders.4’°’2 Le and Price report that the death rate in a group of persons with SCI was 228% greater than that of their age- and gender-matched able bodied control group.(10) This problem is due in part to a sedentary lifestyle and the consequential degenerative changes in the cardiovascular system.(11-15) Pulmonary problems are the primary cause of death in persons with short-term SCI (especially among those with high-level injuries).

Prevention Strategies - Strategies to prevent secondary CV-CP disabilities after a spinal injury include periodic medical evaluations of the patient to identify risk factors and to detect early stages of medical problems and their etiology. Where possible, the doctor intervenes appropriately. Because most DVT and pulmonary embolism occur in the acute stage of spinal injury, prophylactic lower limb compression and anticoagulation therapy are common interventions. To a large extent, preventing secondary CV disabilities involves prescribing appropriate health practices for the patient on subjects such as smoking, appropriate nutrition for weight control, sodium and dietary-fat intake, appropriate physical activities, and illicit drug use. In addition, patients are advised to adhere strictly to prescribed medication schedules to control potentially hazardous conditions (e.g., high blood pressure).

Preventing secondary pulmonary disabilities in persons with high-level SCI includes regular evaluation by a physician of swallowing, pulmonary function, and chest wall mobility. If a tracheostomv has been done, infections and stenosis must he avoided. Manually assisted coughing may he required to maintain an airway if the patient needs aspiration. Although no longer available, a cough machine would also be useful for such a patient. Breathing exercises with a resistive device may improve respiratory muscle strength. The patient can be taught to use the tongue to get air (frog breathing) when normal breathing stops. Because persons with SCI are at a higher risk for pneumonia, they should avoid crowded areas to reduce their chances of catching colds and they should be vaccinated for influenza. In addition, their seat backs should be adjusted to a 20° recline from vertical to avoid kyphosis. 

Much of the workgroup’s discussion focused on the need for persons with SCI increasing their physical activity, because inactivity appears to be largely responsible for their increased risk of secondary CV-CP disabilities. Arm exercise (e.g., arm crank ergometry and wheelchair activity) has traditionally been used to stress test and train wheelchair users.(2) Some studies suggest that CHD risk factors can be reduced in persons with SCI by regular arm exercises. As with sedentary and active able bodied persons, the high risk of CHD is shown by the significantly lower blood concentrations of high-density lipoprotein-cholesterol (HDL-C) in sedentary persons with SCI than in athletic persons with SCI. Recently, Hooker and Wells reported a significant increase in HDL-C level (+20%) and a decrease in total cholesterol (-8%) and in low-density lipoprotein-cholesterol (LDL-C) level (-15%) in persons with SC1 after 8 weeks of moderate-intensity wheelchair ergometer training (60% to 70% peak oxygen uptake for 20 minutes a day, three times a week).’5 These beneficial alterations in blood lipid profile can be extrapolated to a mean decrease of 2O% in future risk for coronary artery disease. Thus, arm exercises may improve SCI patients’ health and reduce their cardiovascular risks similarly to the way in which leg exercises benefit able bodied persons. Because the upper body has small muscle mass and is more susceptible to fatigue, however, arm exercise alone will not produce the same high levels of cardiopulmonary fitness that leg exercise will. 

The group discussed the use of functional electrical stimulation (FES) exercise to increase cardiopulmonary fitness. During the past 10 years, FES research has been conducted with the goal of inducing exercise in paralyzed lower limb muscles.(6)(9) The foremost requirements for FES use is that the muscles to be exercised are paralyzed due to upper motor neuron damage and that the motor units (lower motor neurons and the skeletal muscle fibers they innervate) are intact and functional. Typically in the FES technique, electrical impulses from a stimulator are used and skin surface electrodes are placed over motor points to induce tetanic contractions of controlled intensity directly. Thus, FES-induced exercise of the paralyzed legs has the potential to activate a large muscle mass that otherwise would lie dormant. In addition, FFS exercise appears to increase blood circulation by activating the venous muscle pump. This effect may reduce venous pooling in the legs and increase ventricular stroke volume and cardiac output. FES techniques may also have several other clinical applications including preventing DVT prophylaxis, reducing excessive edema, and alleviating orthostatic hypotension.(20) Ultimately, FES may lead to exercise modes that can raise the health and cardiopulmonary fitness of SCI patients to levels higher than can be attained with only arm exercise. Quadriplegics will probably find this involuntary exercise particularly advantageous because of the small muscle mass they can control. 

In an effort to promote higher levels of cardiopulmonary fitness in persons with SCI a cycle ergometer propelled by FES of the paralyzed lower limb muscles was designed and constructed by Petrofsky and coworkers.(21) In 1984, Therapeutic Technologies, Inc., Tampa, Florida, began manufacturing sophisticated versions of this FES cycle ergometer for clinical and home use. Computer-controlled FES of the quadriceps, hamstrings, and gluteus maximus muscle groups is used to induce contractions at appropriate pedal positions. When operating at the 50-revolutions-per-minute (rpm) target pedal rate, these cycle ergometers

induce 50 contractions of each bilateral muscle group per minute (a total of 300 muscle contractions per minute); the cyclic stimulation pattern and intensity are controlled by a microprocessor. When the pedal rate falls below 35 rpm, exercise is automatically terminated. Since many persons with SCI can pedal continuously for 30 minutes, FES cycle ergometry appears to be well suited for endurance training. Typically, exercise is prescribed for three sessions per week. Physiologic studies conducted on persons with SCI indicate that FES exercise elicits relatively high aerobic and cardiopulmonary responses as well as favorable central and peripheral hemodynamic responses.(22-26) This suggests that FES may provide more effective cardiopulmonary fitness training than arm exercises, especially for patients with quadriplegia who have weakened arm musculature. This exercise can be compared with walking or jogging by able bodied persons. 

Recent research indicates that cardiopulmonary fitness training for SCI patients can be further enhanced by using a hybrid form of exercise training consisting of simultaneous FES cycling and voluntary arm cranking. The results of studies on physiologic responses to this hybrid exercise (and other combinations of FES and voluntary exercises) suggest that hybrid exercise may provide better cardiopulmonary training than FES or arm exercise alone.(27-29)This better effect may be due to the larger muscle mass used, the greater magnitudes of metabolic and cardiopulmonary responses elicited, and possibly the better circulation of blood to both upper and lower body muscles. More research is needed to establish which are the best hybrid exercises and to document the extent to which cardiopulmonary fitness can be improved with long-term training. 

Although FES cycling appears to be beneficial in improving cardiovascular fitness, data documenting long-term reductions in secondary disabilities are not available. Therefore, some clinicians are reluctant to prescribe this exercise for their patients. In addition, FES cycle ergometers are not readily available to many SCI patients, and the cost of this exercise is high (more than $100 per clinic session). Potential patients should be informed of the known potential benefits and risks of FES exercise and should clearly understand that FES will not regenerate damaged neurons or cure paralysis. They should also understand that as with voluntary exercise, any health and fitness benefits derived from FES exercise will be lost several weeks after the activity is discontinued. So, to maintain beneficial effects, FES exercise must become part of the person’s lifestyle. 

Further Research

• Evaluate currently available devices and techniques to establish their efficacy in preventing secondary CV-CP disabilities. Such studies are difficult to do and to control for many reasons, including expense, the long time required, patient compliance problems, and the diversity of the problems persons with SCI face.

• Quantify the frequency and costs of secondary CV-CP disabilities after spinal cord injuries.

The Role of Public Health

• Establish information centers to answer questions about rehabilitation after spinal cord injuries and to teach the public how to prevent such injuries and about the problems related to them. Teach persons wit