Patients, parents had different concerns with treatment of adolescent idiopathic scoliosis
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Published results showed adolescent patients and their parents reported different concerns and decision regret regarding surgical treatment of adolescent idiopathic scoliosis.
Baron Lonner, MD, and colleagues assessed responses to the patient generated index questionnaire by 44 patients with adolescent idiopathic scoliosis and parent pairs. Stages of the questionnaire included five areas of the patient’s life most affected by adolescent idiopathic scoliosis and one area that encompassed all other areas of their lives affected (stage 1), the magnitude of effect (stage 2) and the desire to improve affected areas and decision regret if surgery did not improve the specific area (stage 3).
Results showed sports, general function and general fitness as the three most common patient-reported concerns prior to surgery, while general function, sports and appearance were reported as the three most common parent-reported concerns. Researchers found self-esteem and physical appearance were the most affected domains reported by patients and parents, respectively. Patients reported pain and self-esteem as main operative aspirations compared with sleep and self-esteem as reported by parents, according to results. Researchers noted patients reported uncertainty of future health and parents reported sleep as the highest decision regret.
“The patient generated index is a proof of concept that a minor patient and their parent can discern particular areas of the child’s life as an individual that are affected by her or his scoliosis condition,” Lonner, chief of minimally invasive scoliosis surgery at Mount Sinai Hospital and professor of orthopedic surgery at the Icahn School of Medicine at Mount Sinai, told Healio Orthopedics. “This can serve as a basis for customizing treatment approaches that consider the family unit’s perspective and goals. Future research may elucidate how this individualized tool affects patient outcomes and satisfaction.”
Perspective
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Baron S. Lonner, MD, and colleagues have studied the concerns and regrets related to adolescent idiopathic scoliosis surgery for patients and their parents. Although not perfectly aligned, patients with adolescent idiopathic scoliosis and their parents have concerns largely focused on their function and appearance while postoperatively, they remain most concerned about what the future holds regarding their back health. The open-ended nature of the patient and parent responses of the patient generated index method may make for “messy” scientific analyses, yet this method does allow for the full scope of the concerns to be identified and put on the table for discussion. This is not the case with typical fixed-question patient-reported outcome measures. The goal of identifying the most important patient and parent concerns while setting realistic surgical expectations for the adolescent idiopathic scoliosis population is laudable.
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