Form of Scoliosis Not Severely Disabling

EMBARGOED UNTIL 4 p.m. (ET), Tuesday, Feb. 4, 2003

Findings from the longest-running study of its kind show that individuals with untreated late-onset idiopathic scoliosis have life expectancies and health outcomes that are similar to the general population. The findings challenge a prevailing belief that this type of scoliosis, if left untreated, inevitably leads to severe disability. Late-onset idiopathic scoliosis is a condition that causes curvature of the spine.

The University of Iowa study, which appears in the Feb. 5 issue of the Journal of the American Medical Association, followed the health outcomes of a group of 117 patients with LIS who were first seen between 1932 and 1948. The study found that by most measures of physical and mental health, patients with untreated LIS 50 years after their diagnosis were as healthy as normal controls.

"This is the final chapter on how these patients are doing 50 years plus after the diagnosis was made," said Stuart Weinstein, M.D., the Ignacio V. Ponseti Professor of Orthopaedic Surgery and principal author of the study. "The bottom line is that most patients are doing very well."

Late-onset idiopathic scoliosis is a type of scoliosis that has no known cause and occurs in about 2 to 3 percent of children between ages 8 and 16. Not all spinal curves caused by LIS get worse over time. In general, curves of less than 30 degrees tend to stay under 30 degrees, while more severe curves have varying degrees of progression over time. It is estimated that this type of scoliosis affects about 60,000 adolescents in the United States.

In more than half of all states, scoliosis screening is mandated by law. Weinstein and his colleagues are concerned that a lack of understanding of the long-term outcomes of this type of scoliosis, coupled with the increased efforts to screen children for the condition, could lead to unnecessary tests and anxiety for children and parents faced with the grim prognosis often associated with LIS.

"There are significant efforts going on in the U.S. to screen students, and a significant amount of school resources go into these programs," said Lori Dolan, a clinical specialist in orthopaedic surgery and an author of the study. "The idea behind these screening programs is that scoliosis needs to be treated, or there will be serious health consequences in later life. We have talked to patients from other institutions who were led to believe that without treatment they would be crippled or in a wheelchair or not be able to have children. Our study indicates that those predictions are most likely not true."

The majority of children diagnosed with scoliosis will initially see their primary care physician or pediatrician rather than an orthopaedic surgeon. The UI team hopes that the findings from their study will provide these physicians with information about the natural history of LIS so that they are better informed about the likely outcomes and process of the condition.

The study did find some differences between patients with untreated LIS and their age-matched normal counterparts. Patients with LIS were more likely to have back pain than people without the condition, and individuals with LIS also had slightly more body-image concerns due to spinal deformity caused by the scoliosis. Although these differences were scientifically significant, they were not large.

"The scoliosis patients were only slightly dissatisfied with how they look," Dolan said. "And if you look at the effects of back pain on their lives and jobs and on the number of children they had, there is little functional difference between patients with scoliosis and the general population."

Weinstein added, "For a young person diagnosed today with late-onset scoliosis we can tell them that they may have a greater incidence of back pain than normal, but they won't be disabled by it. We can also say that they will have a certain degree of deformity."

In the 1930s and 1940s, when the study patients were recruited, there were essentially no treatment options available. Also, it was a time when other deforming diseases such as polio and rickets were common, and body image concerns were different from what they are today. Weinstein remarked that patients in the UI study were fairly accepting of deformities caused by LIS. However, he added it was important to realize that such deformities may not be as acceptable for people diagnosed with the condition today.

The study results also give a clear picture of the long-term health outcomes for untreated individuals, which will allow physicians to judge the success of modern treatment options.

"At this stage we don't know what the long-term outcomes are for patients who are treated by conventional methods such as bracing and surgery," Weinstein said. "This study's results will be a basis to measure the success of modern treatment methods."

"People are amazed that we have managed to keep track of this many patients for so long," Dolan said. "But the patients in the study are very happy with the treatment they received as children at the UI, and they were very happy with their physician, Dr. Steindler, so they are happy to come back to help us with this study. People came back for follow-up from as far away as Hawaii and California and the East Coast.

"Also, this is a condition that runs in families, so many of the patients are glad to be part of a study that might in the long term help their children and grandchildren," Dolan added.

In addition to Weinstein and Dolan, other UI researchers involved in the study include Kevin Spratt, Ph.D., and Ignacio Ponseti, M.D., emeritus professor of orthopaedic surgery. Kirk Peterson, M.D., Huxley Family Physicians, Huxley, Iowa, and Mark Spoonamore, M.D., Department of Orthopaedic Surgery, University of Southern California, were also members of the research team.

Funding for the study was provided by a grant from the General Clinical Research Centers of the National Institutes of Health and from the Orthopaedic Research and Education Foundation.

University of Iowa Health Care describes the partnership between the UI Roy J. and Lucille A. Carver College of Medicine and UI Hospitals and Clinics and the patient care, medical education and research programs and services they provide. Visit UI Health Care online at www.uihealthcare.com.