Measuring Outcomes in the Treatment of Early Onset Scoliosis

Assessing outcomes in treatment of early onset scoliosis entails more than just assessing the Cobb angle. At the 52nd Annual Meeting of the Scoliosis Research Society, Michael G. Vitale, MD, MPH, James Sanders, MD, and Peter G. Gabos, MD, discussed options and outcomes.

Assessing outcomes in treatment of early onset scoliosis entails more than just assessing the Cobb angle. It also must consider pulmonary function, quality of life (QOL), and the holistic effects of interventions on children’s lives, experts noted at the Scoliosis Research Society 52nd Annual Meeting & Course September 6-9 in Philadelphia, PA.
pediatrician examining a happy young girl holding a teddy bear“It is without a doubt that options and outcomes for children with early onset scoliosis (EOS) are better than ever,” said Michael G. Vitale, MD, MPH, Ana Lucia Professor of Orthopaedic Surgery and Vice Chief of Quality and Strategy-Orthopaedics at Columbia University Medical Center, New York, NY. However, quantifying outcomes is often challenging in these patients, he said.

“In many traditional orthopaedic surgeries, our goal is to take something that is crooked and straighten it out, but I think we have learned that a straight spine is not enough in scoliosis,” explained Dr. Vitale, who also is Co-Director of the Division of Pediatric Orthopaedic Surgery and Chief of Pediatric Spine and Scoliosis Service at New York-Presbyterian Morgan Stanley Children’s Hospital.

“The natural history of EOS is exceedingly hard to study, and we are left needing to look at surrogates such as Cobb angle, growth in spine height, and QOL,” Dr. Vitale said. “We have learned that as the Cobb angle increases, lung function diminishes.”

In addition, there may be a certain amount of minimum height (eg, ≥17 cm of T1-T12) that is associated with improved lung function, Dr. Vitale said. “While this is a simplistic measure that our pulmonology colleagues may not agree with, one of our goals is to get the spine and whole chest longer in all planes,” he said.

While surgery and other interventions can make patients taller and straighter, the impact of these treatments on QOL outcomes is less clear, Dr. Vitale noted.

Tools for Assessing QOL in Early Onset Scoliosis
“Quality of life is difficult to measure in EOS, and the Children’s Spine Study Group has been on a quest for the last decade to develop an infrastructure to do just that,” Dr. Vitale explained.

In 2011, the group, which Dr. Vitale is a member of, published the Early Onset Questionnaire-24 (EOSQ-24) for evaluating QOL.1 The tool has been validated in at least 8 languages.2

Research indicates that children with idiopathic EOS generally have a good quality of life pre-operatively compared with age-matched controls, which makes QOL difficult to use as an outcome measure, Dr. Vitale said. However, recent research suggests that these children may experience a decrease in QOL during and after certain interventions, including growing rods treatment and casting, he said.

Does Casting Decrease Quality of Life?
While casting can substantially improve the prognosis of scoliotic curves in children, a study by Matsumoto et al found children who underwent casting showed significant decreases in multiple domains of QOL, including transfer (patient mobility), physical function (P=0.02), daily living (P=0.009), and emotion (P=0.034) compared with baseline scores, explained James Sanders, MD, Professor of Orthopaedics and Pediatrics at the University of Rochester Medical Center in New York.3

Surgeons, however, do not always perceive these concerns from patients. In an attempt to understand this discrepancy, Dr. Sanders took a closer look at the research by Matusmoto et al and found that the EOSQ-24 appears to have a ceiling effect in casted patients.

“The casts make transportation, moving the upper body, and getting into an upright position more challenging,” Dr. Sanders said. “Patients certainly get anxious, particularly if they are undergoing repetitive anesthesia and needlesticks. But, in general, when you look at [QOL] scores, they actually are quite high even though they are decreased [compared with baseline levels],” Dr. Sanders explained. 

Growing Rod Treatment Linked to Negative Psychosocial Effects
In addition, research suggests that growing rod treatment may have negative psychosocial effects on children, with a greater risk associated with younger age and increased number of surgeries, explained Peter G. Gabos, MD, Co-Director of the Spine and Scoliosis Center of the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.

In a study of 12 patients implanted with growing rod systems, 3 (25%) scored in the clinically significant range and 4 (33%) scored in an at-risk range on at least 1 scale of the Behavior Assessment System for Children, 2nd Edition-Spanish Version (BASC-2) at 1.5 to 3 years following initial implantation.4 Children who scored in a clinically significant range were more likely to be younger and had a greater number of growing rod surgeries than children who did not score in this range. Similar findings were reported in a larger study by this group.5

“In the era of repeated surgery, we know that we were hurting kids with repetitive returns to the operating room and use of anesthesia,” Dr. Vitale said. “We hope that in the era of [magnetically-controlled growing rods], this type of psychosocial stress may be a thing of the past.”

Study Limitations
These findings must be interpreted with study limitations in mind, including the paucity of studies on the impact of treatment on QOL, Dr. Gabos said.

“Studies are underpowered, there is no uniform assessment tool, and studies use parent-based assessments,” Dr. Gabos said. “The timing of assessment probably matters and assessments should be administered repetitively. Studies have no true controls, comorbidities are not accounted for, and there is no baseline assessment and short follow-up.”

Nevertheless, “We have to recognize a continuum of anxiety, depression, acute stress disorder, and post-traumatic stress disorder” in children with EOS, Dr. Gabos said. He added that, in the future, uniform psychosocial screening and assessment tools need to be used as well as pathways set up for mitigating psychosocial effects of treatment.

Updated on: 10/03/17
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