Introduction The goal of early-onset scoliosis (EOS) treatment is to improve health-related quality of life (HRQoL) for patients and to reduce the burden on their parents or caregivers. The purpose of this study is to develop and finalize the 24-item Early-Onset Scoliosis Questionnaire (EOSQ-24), and examine the validity, reliability, and responsiveness of the EOSQ-24 in measuring patients’ HRQoL, the burden on their caregivers, and the burden on their caregiver’s finances. The study also established aged-matched normative values for the EOSQ-24. Methods The EOSQ-24 was administered to caregivers of male and female patients aged 0 to 18 years with EOS. Patients with EOS are diagnosed before 10 years of age. Criterion validity was investigated by measuring agreement between its scores and pulmonary function testing. Construct validity was established by comparing values across different etiology groups using the known-group method, and measuring internal consistency reliability. Content validity was confirmed by reviewing caregiver and health provider ratings for the relativity and clarity of the EOSQ-24 questions. Test-retest reliability was examined through intraclass correlation coefficients. Responsiveness of the EOSQ-24 before and after surgical interventions was also investigated. Age-matched, healthy patients, without spinal deformity, were enrolled to establish normative EOSQ-24 values. Results The pulmonary function subdomain score in the EOSQ-24 was positively correlated with pulmonary function testing values, establishing criterion validity. The EOSQ-24 scores for neuromuscular patients were significantly decreased compared with idiopathic or congenital/structural patients, demonstrating known-group validity. Internal consistency reliability of patients’ HRQoL was excellent (0.92), but Family Burden was questionable (0.64) indicating that Parental Burden and Financial Burden should be in separate domains. All 24 EOSQ items were rated as essential and clear, confirming content validity. All EOSQ-24 domains demonstrated good to excellent agreement (0.68 to 0.98) between test and retest scores. Neuromuscular patients improved their HRQoL postoperatively, whereas idiopathic patients worsened their HRQoL postoperatively, indicating the ability of the instrument to respond to different trajectories of HRQoL according to etiology in patients with EOS. Discussion The developed and finalized EOSQ-24 is a valid, reliable, and responsive instrument that is able to serve as a patient-reported outcome measure evaluating health status for patients with EOS and burden of their caregivers. This instrument will be able to serve as an outcome measure for future research including clinical trials evaluating the effectiveness of various treatments. In addition, the EOSQ-24 allows assessment of patients’ HRQoL, and the burden on their caregivers relative to age-matched healthy peers. Level of Evidence Level II—diagnostic study with consecutive patients enrolled in national registries.
Objectives After completing this article, readers should be able to: 1. Describe congenital idiopathic talipes equinovarus (CTEV). 2. Differentiate CTEV from metatarsus adductus clinically. 3. Discuss how to rule out comorbid conditions such as torticollis and hip dysplasia when considering CTEV. 4. Describe the initial treatment of CTEV. 5. Discuss the genetic pattern of CTEV. Historical Perspective CTEV, commonly known as clubfoot, has been a recognized deformity since the time of the ancient Egyptians and was described independently by Hippocrates and the Aztecs. As implied by its name, the underlying deformity consists of a hind foot in equinus (plantarflexed) and varus (inverted). Additionally, there often is a cavus (abnormally high arch) and adductus component to the midfoot (Figs. 1 to 3). Essentially, the foot appears as though it was rotated inward and, in severe cases, as though it is on backwards. Historically, initial treatments were variations on the theme of manipulation (sometimes forceful and violent) and splinting. Surgical intervention began in the late 18th century with Lorenz's Achilles tenotomy, but effective soft-tissue releases, osteotomies, and tendon releases did not evolve until the late 19th century with the advent of anesthesia and aseptic technique. Hiram Kite popularized gentle manipulation and serial casting in 1930, a technique championed and refined by Ignacio Ponseti in the 1950s. This remains the initial treatment of choice today. Although the basic concepts remain the same, surgical and nonsurgical techniques for the treatment of resistant CTEV continue to evolve, promising improved outcomes for children born with this condition. This article addresses primarily the more common idiopathic form of this condition, and unless otherwise stated, CTEV refers to idiopathic CTEV.
Despite decades of experience in the area of clubfoot repair, considerable uncertainty remains regarding indications, surgical technique, and long-term results of treatment. Much of this uncertainty is due to the lack of a standardized and valid method for assessing postoperative outcomes of clubfoot repair. The current study used various end points to compare traditional and patient-based outcome measures and to develop a disease-specific instrument that is both meaningful to the patient and statistically valid. A cohort of 46 patients was identified, and several types of outcomes data were collected, including traditional end points of outcome (range of motion and radiographic criteria, qualitative patient-based data) and a previously validated instrument measuring pediatric functional status (FSIIr). At an average follow-up of 45 months, radiographic measures and range of motion were comparable to values published in previous studies. Postoperative functional status, as measured by the FSIIr, did not differ from that of age-matched controls. Psychometric analysis of these data allowed us to generate a 10-item disease-specific instrument (DSI), which conveyed patient-based attitudes toward outcome.
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