Specialized Care Program helps Gulf War veterans gain improved health

WASHINGTON, November 16, 2000 (GulfLINK) - For Dewey Hannon, it has been about keeping the faith. Doggedly and relentlessly he has chosen not to give in to the disabling symptoms that became his personal legacy from service in the Gulf War. His persistence led him to the Specialized Care Program, the third phase of the Department of Defense's Comprehensive Clinical Evaluation Program located at the Deployment Health Clinical Center at Walter Reed Army Medical Center in Washington, D.C. The program is making a big difference in his life and the lives of some sick Gulf War veterans.

Established in 1995 for veterans who have completed Phase I and II of the CCEP, the program's mission is to address the chronic and debilitating symptoms among Gulf War veterans or family members that remain undiagnosed even at the end of a "no stone unturned" style of medical evaluation. The program was modeled upon internationally recognized centers known to be effective for individuals with chronic illnesses who are unlikely to respond to biomedical treatments.

"A significant number of people are having positive outcomes," said Michael Kilpatrick, M.D., deputy director, medical outreach and issues from the Office of the Special Assistant for Gulf War Illnesses. "The multidisciplinary approach demonstrates that the mind and body do work together."

"When they enter into the program people have a variety of concerns," said Engel. "The most common symptom we see is pain in various parts of the body. Fatigue usually accompanies that. Then in the background is concern about memory. They tend to have all or some of those challenges."

Hannon was a member of an air crew deployed to the Gulf to patrol the United Nations "no fly" zone after the cease fire in November 1992. His second deployment to the region came in 1995, from January to March. A year later he developed upper respiratory problems which were accompanied by fatigue and migraine headaches. He recalls being told that his symptoms were "all in his head." His frustration with his illness increased when his flight surgeon told him he was malingering.

"I wanted someone to listen to me and believe me. I knew something was wrong and it was interfering with my life," he said.

When participants first arrive at the Specialized Care Program they usually have been beating down doors trying to get assistance for their problems, Engel explained.

"It is fairly apparent that people who come to us are suffering. So our first approach is to acknowledge their illness and let them know we are on their side. We understand they are ill and we want to help them," Engel added. "Most of the time the veteran has had an experience with a physician who denies the existence of the veteran's symptoms because the physician does not know what to do or what they are dealing with."

Hannon believes the honesty and compassion extended to him by the program's health practitioners was critical to his success.

"They told us they didn't have a cure but they were going to help us cope as best they could," he said, describing his first day in the program.

Engel, who served in the Gulf War, said the uncertainty surrounding Gulf War illnesses is one of the most disabling aspects for veterans. With that in mind, he and his team attempt to provide full and open disclosure about currently available Gulf War research and the illnesses' impact on veterans' health during the intensive three-week period.

"Because veterans read all kinds of things regarding possible causes of the illnesses, they don't know who to trust."

Once the patient's illness is acknowledged, a multi-disciplinary team consisting of a general internist, a social worker, a physical therapist, a psychologist, a nutritionist and an occupational therapist counsels individuals to determine how their physical symptoms get in the way of living a normal life. Elements of disability among patients range from having occupational trouble such as passing a physical fitness test to having difficulty due to chronic pain when embracing or lifting their child.

With input from the patient, a symptom management plan with individualized regular primary medical care, exercise, self-care and active coping strategies is developed. Care providers assist patients in understanding how they can change their own beliefs about their health condition and thereby lessen the level of distress impacting their lives. The education-oriented approach guides veterans in matching their lifestyle to specific health challenges.

Veterans are also taught physical activation strategies that help to combat the deconditioning that occurs with chronic illness. Engel stressed that one of the downstream effects of chronic illness is that patients become very demoralized. As the body becomes more deconditioned, it becomes more vulnerable to subsequent injuries that compound the long-term effects of the illness.

Active-duty Army Col. Steve Tolle was battalion commander with the 14th Transportation Battalion headquartered in Vicenza, Italy, when he deployed to Northern Iraq for four days in January 1991, and then for seven months later in the year. While on a tour of duty in Korea two years later, he began to be plagued by irritable bowel symptoms, fatigue and chronic pain. He attempted to cope with his illnesses by toughing it out.

"As an officer, your approach is 'I'm in charge.' Being able to accept less than perfect regarding my health was a difficult issue," Tolle said. "It's hard for the person who is sick to explain things."

Tolle feels that participating in the program with his wife contributed to a greater understanding between them and accelerated his return to improved health. He found that the tools the program gave him to cope with his health problems - relaxation techniques, occupational and physical therapy and fitness training - proved to be invaluable. He has incorporated the relaxation techniques into his daily routine and expects to continue them well into retirement.

"The validated measurements in the study suggests to us that we are providing Gulf War veterans with an important service," said Engel. "They are experiencing, what I would describe as a modest improvement in a number of different areas in their lives. And, this hopefully adds up to more than a modest impact for them."

Engel observed that the most robust improvement among participants is that they leave the program feeling much less distressed. Consequently, they find they are able to function quite better and their quality of life improves, he said.

Since its inception, the Specialized Care Program has delivered care to more than 400 Gulf War veterans. Last year, the Defense Department opened the program to servicemembers with unexplained illnesses attributed to deployments other than the Gulf War, including Somalia, Haiti, Kosovo and Bosnia.

A recent study conducted by the Deployment Health Clinical Center indicates that program elements that use medical review, graded exercise, education, active coping and nutrition result in modest health improvements in Gulf War veterans with unexplained symptoms. Findings show the three-week rehabilitative treatment program is helping Gulf War veterans gain improvements in physical symptoms, work performance and other activities of daily living.

The results of the study are documented in "Rehabilitative Care of War-Related Health Concerns," published in the April 2000 edition of the Journal of Occupational and Environmental Medicine. More than 100 veterans were assessed for physical symptoms, quality of life, physical health concerns and psychosocial distress. Each program patient was interviewed at the beginning and end of the program and at one- and three-month intervals after program completion. The study found that Gulf War veterans who completed the program experienced modest, short-term improvements when mental health functioning, physical symptoms, physical health concerns, psychosocial distress and satisfaction with the specialized care program experience were measured.

"Our sense is that these types of health concerns are common after deployment and the dilemma is the same," said Engel.

Following the Gulf War, many servicemembers complained that health practitioners responded to their symptoms with skepticism and disbelief. Often physicians who haven't been able to identify a specific disease etiology tend to discount the veteran's symptoms and the person who has them, Engel acknowledged.

The departments of Defense and Veterans Affairs are jointly taking steps to improve this situation and the diagnostic skill with which health care practitioners respond to servicemembers who suffer with post-deployment symptoms. Engel currently oversees the effort to develop a post-deployment clinical practice guideline that offers health care providers a clinically-driven assessment of post-deployment symptoms and a rational approach to treatment.

Considered to be the next evolution of the Comprehensive Clinical Evaluation Program, the guideline will provide options for the veterans who deploy and return with unexplained physical symptoms.

"It is essentially like an instruction book for physicians within the DoD and the VA on how to proceed with patients with these particular challenges," said Engel. "Our challenge is to help physicians see us as a treatment option that improves the quality of life for those veterans."