Cognitive testing of the spinal appearance questionnaire with typically developing youth and youth with idiopathic scoliosis.
ABSTRACT The Spinal Appearance Questionnaire (SAQ) underwent initial psychometric studies, which suggested good reliability and discriminative ability. Although the SAQ is used as a self report of appearance, our center was concerned about its use with youth owing to complex words and vague questions. We conducted this cross-sectional study to evaluate the readability, comprehension, and interpretation of items on the SAQ.
Cognitive interview methodology of 76 youths (8 to 16 y; average age 13) included 31 with scoliosis and 45 typically developing. Subjects were required to read each SAQ item and think aloud to capture cognitive processes about the items and responses. Interviews were audiotaped and transcribed verbatim. Problems were categorized and frequencies for each category were calculated.
There were reading and comprehension problems and problems understanding the illustration with every written and pictorial SAQ item, respectively. The percent of subjects who encountered at least one problem ranged from 16% to 96%. Subjects had difficulty with understanding the intent of every SAQ item and with understanding the meaning of specific words such as "prominence" and "flank." The pictorial illustrations for items 2 and 3 were problematic for 58% and 49% of subjects, respectively. The illustrations of the lungs (item 4) and hips (items 4 and 5) were problematic for 42% and 27% of subjects, respectively. These results were consistent regardless of age or diagnoses.
This study does not support the use of the SAQ as currently used with youth owing to use of complex medical words, vague questions, difficult illustrations, and various interpretations of the intent of many of the items.
Not applicable (not an intervention study).
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ABSTRACT: PURPOSE: The Patient-Reported Outcomes Measurement Information System (PROMIS(®)) provides adult and pediatric self-report measures of health-related quality of life designed for use across medical conditions and the general population. The purpose of this study was to examine the feasibility and validity of the PROMIS(®) Pediatric Short Form and computer-adaptive test (CAT) mobility measures in children with cerebral palsy (CP). METHODS: Eighty-two children with CP completed self-report (PROMIS(®) Mobility Short Form, PROMIS(®) Mobility CAT, Pediatric Quality of Life Inventory™) and performance-based assessments of mobility (Timed Up and Go, Gross Motor Function Measure). Parents provided three proxy reports of child mobility (Pediatric Outcomes Data Collection Instrument, Functional Assessment Questionnaire, Shriners Hospitals for Children CP-CAT). Validity of PROMIS(®) instruments was examined through correlations with other measures and "known groups" analyses determined by Gross Motor Function Classification System (GMFCS). RESULTS: On average, the PROMIS(®) CAT required less than seven items and 2 minutes to administer. Both PROMIS(®) measures showed moderate to high correlations with child- and parent-proxy report of child mobility; correlations with performance-based measure were small for the PROMIS(®) Short Form and non-significant for the PROMIS(®) CAT. All measures except for the PROMIS(®) CAT were able to distinguish between GMFCS categories. CONCLUSIONS: Results support the convergent and discriminant validity of the pediatric PROMIS(®) Mobility Short Form in children with CP. The PROMIS(®) Mobility CAT correlates well with child report and parent report of mobility but not with performance-based measures and does not differentiate between known mobility groups.Quality of Life Research 03/2013; · 2.41 Impact Factor
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ABSTRACT: PURPOSE: To review and summarize the current knowledge regarding the outcome measures used to evaluate scoliosis surgery. METHODS: Literature review. RESULTS: Outcome instruments should be tested to ensure that they have adequate metric characteristics: content and construct validity, reliability, and responsiveness. In the evaluation of scoliosis, generic instruments to assess health-related quality of life (HRQL) have been used, such as the SF-36 questionnaire and the EuroQol5D instrument. Nonetheless, it is preferable to use disease-specific instruments for this purpose, such as the SRS-22 Patient Questionnaire and the quality of life profile for spinal deformities (QLPSD). More recently, these generic and disease-specific instruments have been complemented with the use of super-specific instruments; i.e., those assessing a single aspect of the condition or specific populations with the condition. The patients' perception of their trunk deformity and body image has received particular attention, and several instruments are available to evaluate these aspects, such as the Walter-Reed Visual Assessment Scale (WRVAS), the Spinal Appearance Questionnaire (SAQ), and the Trunk Appearance Perception Scale (TAPS). The impacts of brace use can also be measured with specific scales, including the Bad Sobernheim Stress Questionnaire (BSSQ) and the Brace Questionnaire (BrQ). The available instruments to evaluate the treatment for non-idiopathic scoliosis have not been sufficiently validated and analyzed. CONCLUSIONS: Evaluation of scoliosis treatment should include the patient's perspective, which can be obtained with the use of patient-reported outcome measures.European Spine Journal 05/2012; · 2.13 Impact Factor
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ABSTRACT: The perspective of trunk deformity is a matter of special concern for adolescent idiopathic scoliosis (AIS) patients. No research group has ever reported interviewing patients and their parents regarding differences in perception of body appearance in the course of Cheneau brace treatment. We aimed to investigate the level of agreement in the field of concerns and perceptions of spinal appearance in relation to brace- and scoliosis-related data between parents and female patients with AIS, treated with a Cheneau brace, by means of the Spinal Appearance Questionnaire-pl (SAQ-pl). In this cross-sectional study forty-one pairs of parents and female patients with AIS were asked to separately complete the Polish versions of the Spinal Appearance Questionnaire-pl patient form (SAQ-pl patient form) and the SAQ-pl parent form. Age of patients was 13.60 years SD 1.60 (range 10–17). Patients scored 2.70 (SD 0.60) and parents scored 2.70 SD 0.60 in the total score of the SAQ-pl. The study groups do not differ significantly in regards to the SAQ-pl results. The percentage of consistent answers on SAQ-pl items ranges from 34.10 % (item 20) to 78 % (item 8). Height, age and brace-wearing time per day, were significantly related to the differences in the patient-parent General perception of body shape (rs = −0.51, rs = −0.34, rs = 0.36, respectively). Parents and female patients with AIS have similar concerns and perceptions of spinal appearance. The discrepancies in General perception of spinal appearance between parents and AIS females decrease with age of patient. Parental emotional support may contribute to minimizing the risk factors of psychological impairment, especially in late adolescents with AIS.Journal of Child and Family Studies · 1.12 Impact Factor