Relevant areas of functioning in patients with adolescent idiopathic scoliosis on the International Classification of Functioning, Disability and Health: The patients' perspective.

Abstract

To investigate relevant aspects of functioning and disability, and environmental factors in people with adolescent idiopathic scoliosis according to patients' self-reports based on the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Multicentre, empirical, cross-sectional study. Four departments of orthopaedics in 4 hospitals, and 5 departments of rehabilitation medicine in 5 hospitals. Semi-structured interviews were conducted with 975 patients with adolescent idiopathic scoliosis from 5 hospitals according to the patients' self-reporting. In addition, patients were divided into 3 groups according to clinical outcome. Participant information included demographic and disease-related characteristics. Three adolescent idiopathic scoliosis groups were then compared with respect to the problems identified. Interviews were transcribed verbatim. Categories identified by qualitative analysis were subsequently mapped to the ICF-CY using established linking rules. In order to enrich these findings, we also translated the Scoliosis Research Society 22 Patient Questionnaire (SRS-22 PQ) into the language of the ICF-CY, based on ICF linking rules. A total of 1278 themes that linked to 54 ICF-CY cate-gories from 18 chapters were identified. Twenty-two (41%) categories were identified as Body Functions, 7 (13%) as Body Structures, 15 (27%) as Activities and Participation, and 10 (19%) as Environmental Factors. Of the 54 categories, 45 (83%) were second-level, 5 (9%) were third-level, and 4 (7%) were fourth-level. Differences between the SRS-22 PQ results and our findings were observed for several ICF-CY categories. Patients with AIS reported activity limitations and participation restrictions combined with impaired body structures and functions. Environmental factors may act as a barrier to, or facilitator of, patient functioning in daily life. The ICF-CY provides a valuable framework for representing the complexity and multifaceted impact of AIS, and for comparing and examining the content of the SRS-22 PQ for AIS in children and adolescents. These results will be used to develop ICF Core Sets for AIS in China.