Measures of pediatric function: Child Health Assessment Questionnaire (C‐HAQ), Juvenile Arthritis Functional Assessment Scale (JAFAS), Pediatric Outcomes Data Collection Instrument (PODCI), and Activities Scale for Kids (ASK)

Clinical Physical Therapy, Columbia University, New York, New York 10032, USA.
Arthritis care & research 11/2011; 63 Suppl 11(S11):S371-82. DOI: 10.1002/acr.20635
Source: PubMed


Sensitivity of the PODCI scales to detect change over time was evaluated in several ways: 1) By correlation of change scores on the parent and physician questionnaire with parent and physician scores on a 5-point transition scale indicating change in the child's health status (much better to much worse) over a 9-month time period. Results indicated both parent and physician change score were almost completely uncorrelated with their transition scores. Higher correlations were found between change scores on the adolescent self-report and adolescent and physician transition scores. Adolescent PODCI global scores and two subscale scores correlated better with the adolescent and physician transition scores than the CHQ. However, based on regression analysis to understand the basis of parents' and adolescents' assessment of overall change in the patient's global health and orthopedic condition, the authors concluded that much of parent and adolescent judgment of improvement or decline in function was unrelated to self-perceived measures of current function or change from baseline. Parents and adolescents appear to base their judgments of change on different areas; 2) by sensitivity to change among a subset of patients who should change the most from baseline to followup assessment (score of ≤80 on a composite score of 0–100, consisting of physician-rated function, PODCI global function, and CHQ physical function). Comparing outcomes in a sample of 113 subjects with data on all key patient-report outcomes scales using t-tests, all PODCI scales, except upper extremity function, ranked higher on sensitivity than the CHQ physical function scale. The PODCI global score was 2.9 times more efficient than the CHQ at detecting change in this sample. In 49 adolescents with baseline composite scores of ≤80 and complete data for key scales, the most sensitive scale was the PODCI physical sports and activities scale, followed closely by the CHQ physical function and PODCI global score; and 3) By t-scores for sensitivity based on the severity of baseline diagnosis. Change scores were greatest for patients with diagnoses rated as most severe (n = 34). PODCI global score and 2 subscales were more sensitive to change than the CHQ physical function scale. The PODCI upper extremity function scale discriminated best between subjects with and without upper extremity impairments, 6.8 times more efficient than the CHQ global function. PODCI transfers and mobility scale was the best discriminator of function between groups with and without lower extremity impairments, being 2.6 times more efficient than the CHQ physical function scale.

Download full-text


Available from: Susan Klepper, Oct 02, 2014
273 Reads
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: There is a lack of health-related quality of life (HRQOL) questionnaires to evaluate pediatric musculoskeletal diseases in Brazil. The Pediatric Outcome Data Collection Instrument (PODCI) is widely used elsewhere for pediatric patients with musculoskeletal disorders, but it has not been fully validated in Brazil. Validation of the PODCI in the Brazilian Portuguese language is important to improve the assessment of pediatric patients with musculoskeletal diseases and to compare Brazilian study results with results from the international literature. This study aimed to analyze the test--re-test reliability and the convergent validity indicators for the quality of life scores obtained by application of the PODCI to children and adolescents with juvenile idiopathic arthritis (JIA). The PODCI underwent translation, transcultural adaptation, and field testing. Fifty-seven children and adolescents with JIA were administered the PODCI questionnaire. The Child Health Questionnaire - Parent Form 28 (CHQ PF-28) was used as the gold standard. Pain scales were employed, clinical examinations were performed, and laboratory inflammatory activity tests were conducted. The three versions of the PODCI exhibited good internal consistency (Cronbach's alpha coefficient >0.70), good reproducibility (p < 0.05), and good correlation compared with the gold standard (CHQ), as shown by a Spearman coefficient (Rho) >0.40 (p < 0.05). The PODCI was validated in patients with JIA in Brazil. This questionnaire was found to be valid, precise, and reliable. It can be successfully applied in research conducted by healthcare professionals who work with children and adolescents with musculoskeletal system disorders.
    BMC Pediatrics 10/2013; 13(1):177. DOI:10.1186/1471-2431-13-177 · 1.93 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: This article provides an introduction to key aspects of outcomes research in pediatric rheumatology, focusing on arthritis. Patient-centered outcomes research addresses questions of interest to multiple stakeholders in order to guide the best health care decisions suited to a particular patient's circumstances and preferences. Discussion includes the importance of maintaining high-quality longitudinal patient registries and use of valid clinical and patient-reported outcome measures. Rapid, reliable translation of research on best practices into clinical care, as facilitated by quality improvement learning networks, leads to timely and meaningful improvement in patient outcomes.
    Rheumatic diseases clinics of North America 11/2013; 39(4):921-33. DOI:10.1016/j.rdc.2013.07.004 · 2.69 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Improvement of quality of life in neuromuscular disorders is a primary objective, both in management of affected children and in the context of therapeutic trials. Quality of life is a subjective concept and it is crucial to gather information directly from patients. We created the SOLE Questionnaire for NMDs, a new instrument designed to investigate quality of life in children with neuromuscular disorders, and tested it in a study population of 78 patients and in 81 healthy children aged 5 to 13 years. The SOLE Questionnaire, characterized by a visual and neutral approach, was well received, practical, rapid to administer, and able to discriminate between patients and controls. We also confirmed the presence of disagreement about children's quality of life between children and their parents. We suggest that our new approach could help to improve understanding of quality of life in children with neuromuscular disorders.
    Journal of child neurology 02/2014; 29(2):167-81. DOI:10.1177/0883073813511859 · 1.72 Impact Factor
Show more