RT Journal Article SR Electronic T1 Quality of life of children with tuberous sclerosis complex JF Archives of Disease in Childhood JO Arch Dis Child FD BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health SP 972 OP 978 DO 10.1136/archdischild-2018-316394 VO 104 IS 10 A1 Choong Yi Fong A1 Kexin Ng A1 Ann Nie Kong A1 Lai Choo Ong A1 Mohamed Ahmad Rithauddin A1 Meow Keong Thong A1 Vigneswari Ganesan A1 Hock Sin Heng A1 Chee Ming Teh A1 Norazni Yahya YR 2019 UL http://adc.bmj.com/content/104/10/972.abstract AB Aim Evaluation of impaired quality of life (QOL) of Malaysian children with tuberous sclerosis complex (TSC) and its possible risk factors.Method Cross-sectional study on 68 parents of Malaysian children aged 2–18 years with TSC. QOL was assessed using proxy-report Paediatric Quality of Life Inventory (PedsQL) V.4.0, and scores compared with those from a previous cohort of healthy children. Parents also completed questionnaires on child behaviour (child behaviour checklist (CBCL)) and parenting stress (parenting stress index-short form). Multiple regression analysis was used to determine sociodemographic, medical, parenting stress and behavioural factors that impacted on QOL.Results The mean proxy-report PedsQL V.4.0 total scale score, physical health summary score and psychosocial health summary score of the patients were 60.6 (SD 20.11), 65.9 (SD 28.05) and 57.8 (SD 19.48), respectively. Compared with healthy children, TSC patients had significantly lower mean PedsQL V.4.0 total scale, physical health and psychosocial health summary scores (mean difference (95% CI): 24 (18–29), 20 (12–27) and 26 (21–31) respectively). Lower total scale scores were associated with clinically significant CBCL internalising behaviour scores, age 8–18 years and Chinese ethnicity. Lower psychosocial health summary scale scores were associated with clinically significant CBCL internalising behaviour scores, Chinese ethnicity or >1 antiepileptic drug (AED).Conclusion Parents of children with TSC reported lower PedsQL V.4.0 QOL scores in all domains, with psychosocial health most affected. Older children, those with internalising behaviour problems, of Chinese ethnicity or on >1 AED was at higher risk of lower QOL. Clinicians need to be vigilant of QOL needs among children with TSC particularly with these additional risk factors.