Page 168 - Demo

Chapter 6166Additional file 1MethodsMeasuresThe TAND checklist was used to identify additional items for the physical functions domain. It was specifically designed by a project team member as a screening tool for neuropsychiatric manifestations of TSC 38. It addresses developmental milestones, level of functioning, behavioral concerns, psychiatric disorders, intellectual ability, academic skills, psychosocial functioning, and ratings of the impact of the neuropsychiatric symptoms. The TAND checklist has been validated, showing good internal consistency and external validity38,45.For construct validity, the Short-Form-36 Health Survey (SF-36)24 including a proxy-report, and scales assessing emotional and behavioural problems from the Achenbach System of Empirically Based Assessment (ASEBA)43,44, i.e., the Adult Self Report (ASR), the Child Behavior Checklist (CBCL)/1.5-5 and CBCL/6-18 were used.The SF-36 is a generic measure with 36 items, organized into eight multiitem scales assessing physical functioning, bodily pain, role limitation due to physical health problems, role limitation due to personal or emotional problems, emotional well-being, social functioning, energy/fatigue, and general health perceptions46. A proxy version of the SF-36 was available from a previous study42. Summary component scores for physical health (PCS) and mental health (MCS) were calculated, ranging from 0-100, with higher scores indicating better health status. The SF-36 has been commonly used in TSC research and showed evidence of validity and reliability as a measure of HRQoL in parents of children with mental illness47-49. The Adult Self Report (ASR) and the Child Behavior Checklist (CBCL) are part of the ASEBA questionnaires, assessing competencies (activities, social, school, and total), emotional state, and behavioural problems of children and adolescents43,44,50. Total scores were used. The ASR and CBCL Annelieke Muller sHL.indd 166 14-11-2023 09:07