Identifying the concepts in outcome measures of clinical trials on osteogenesis imperfecta using the International Classification of Functioning, Disability and Health - version for children and youth

Abstract

ABSTRACT

Applicability of the ICF-CY in evaluating children with disabilities and family support: an integrative literature review

“…This category is composed of two thematic variables: rehabilitation 8,21-24 and research [25][26][27][28][29][30][31][32][33][34][35] .…”

“…In the theme related to researches, the studies aimed at: demonstrating how the universal language of the ICF-CY may increase the specificity with which researchers and clinics describe the varying manifestations of the Agenesis of the Corpus Callosum (ACC); examining and synthesizing the knowledge available in literature concerning the instruments used in relation to functionality in children with CP; identifying the concepts of outcome measurements in clinical trials in osteogenesis imperfecta (OI), analyzing how these concepts relate to ICF-CY and describing which functioning components are mostly assessed; associating the subcategories of the ICF to the items of the Assessment of Motor Coordination and Dexterity (abbreviated in Portuguese as Acoordem) and determining whether the items of the Acoordem fit into the structure of the ICF; seeing how the content of the deficiency measures differed in five researches in the USA and throughout time; carrying out a systematic review regarding the use of ICF in observational studies; evaluating up to what point the instruments intended for measuring the participation of children are actually effective, and whether their items can be classified according to ICF-CY; cataloging the ICF codes regarding Dentistry; verifying whether the ICF scales and the Gross Motor Function Classification System (GMFCS) are related, and verifying whether the functional objectives are properly related to the two standard measures; examining and comparing the content of the Quality of Life in Short Stature Youth (QoLISSY) questionnaires to the ICF-CY; identifying the most relevant categories of the ICF-CY for evaluating patients [25][26][27][28][29][30][31][32][33][34][35] .…”

Functional status of individuals with osteogenesis imperfecta: data from a reference center

“…However, few studies in the literature present the evaluation of body function linked to the impact on other domains such as activity and social participation, which will translate the impact of the clinical manifestations and complications of the disease on different areas of the life of individuals with OI. 10 Thus, this study aimed to evaluate the functionality of individuals with OI followed up at a reference center.…”