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In Pediatric Orthopedics, Quality of Life Comes First

Like many children with cerebral palsy (CP), Peter Weinstein, 8, has already endured several surgeries (two so far) to relieve tightness in his muscles that hinder his gait. Peter's participation in quality of life research at Columbia to determine long-term benefits of these procedures will help other children with CP get the best possible treatment.
Like many children with cerebral palsy (CP), Peter Weinstein, 8, has already endured several surgeries (two so far) to relieve tightness in his muscles that hinder his gait. Peter's participation in quality of life research at Columbia to determine long-term benefits of these procedures will help other children with CP get the best possible treatment.
In assessing his branch of medicine, pediatric orthopedics, Michael Vitale, M.D., M.P.H., a Herbert Irving Assistant Professor of Orthopedic Surgery, is blunt about whether all interventions benefit children. “In this field, we’re not always absolutely sure we make kids better,” he says. “That’s why our department takes a different approach.”
   Dr. Vitale has helped shift the focus of the Division of Pediatric Orthopaedic Surgery away from interventions that may look good on X-rays but don’t always provide substantial benefits to patients. “Our focus increasingly is on giving kids freedom from pain, improving their emotional well-being, and easing the burden for their caregivers.
   “I think that in many cases we’ve been looking at the wrong questions,” Dr. Vitale says. “In clubfoot surgery, for example, success used to be measured by how improved the angle of a child’s bones were after surgery. But even after surgery, many kids often still had stiff feet and didn’t move very well. So even when we see good radiological results, surgery may not improve quality of life.”
   Quality of life research is becoming more common in pediatric orthopedics, but CUMC still has one of the few groups in the country where such patient-centered studies are the norm.
   “When we started two decades ago, there was real resistance to the use of so-called ‘subjective’ outcomes, because surgeons wanted to measure things – range of motion, X-rays,” says David Roye, M.D., the St. Giles Foundation Professor of Clinical Orthopedic Surgery and director of the division. “Physicians were not aware that quality of life can be measured just as dependably as bone healing. In reality, our group feels that subjective outcomes including quality of life are probably more important than most of the standard parameters that orthopedic surgeons have used in the past. If an X-ray is perfect but the patient’s life is not improved, then your surgery was worthless.”
   Measuring quality of life is, of course, much harder than measuring the angle of a foot or the length of a leg. In children this is an even more daunting parameter because they cannot always describe their physical limitations or emotional states. Children’s normal development provides a moving target to efforts that seek to measure function, activities, and behavior.
   Creating the tools to measure quality of life is a main focus of the Pediatric Orthopedic Research Group, and almost every child who seeks care in the division participates in such research. Many of the studies concentrate on cerebral palsy, a condition that affects nearly one third of the children seen by the division’s doctors. Many children with cerebral palsy have four or five separate surgical procedures during their childhood years.
   To determine which surgeries truly help cerebral palsy patients, researchers at CUMC and elsewhere use a quality of life questionnaire recently developed by Dr. Vitale. Assessing quality of life issues in such children present a challenge, however, because the condition manifests in widely disparate ways. Some children with this condition are not able to speak, while others can attend school and even engage in sports like baseball.
   Providing relief for parents and caregivers is turning out to be a key benefit of some surgeries. Straightening the spine of a child who will never leave a wheelchair may seem unnecessary, but Dr. Vitale, who is also the chief of the Pediatric Spine and Scoliosis Service, has focused on broader aspects of function and family dynamics. If the surgery helps the child sit more upright, it becomes easier for the parent to move and to care for the child. This in turn allows parents to take the child out to socialize with friends and family, and everyone benefits.
   “I do think it is still important to look at radiological outcomes,” Dr. Vitale says, “But unless you look at these quality of life measures too, you’re not going to see the whole picture or be able to properly weigh treatment options.”

—Susan Conova

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