Article Text

Download PDFPDF
Quality of life of children with tuberous sclerosis complex
  1. Choong Yi Fong1,
  2. Kexin Ng1,
  3. Ann Nie Kong1,
  4. Lai Choo Ong1,
  5. Mohamed Ahmad Rithauddin2,
  6. Meow Keong Thong3,
  7. Vigneswari Ganesan4,
  8. Hock Sin Heng5,
  9. Chee Ming Teh4,
  10. Norazni Yahya6
  1. 1 Division of Paediatric Neurology, Department of Paediatrics, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
  2. 2 Paediatric Neurology Unit, Paediatric Institute, Hospital Kuala Lumpur, Kuala Lumpur, Malaysia
  3. 3 Genetics Medicine Unit, Department of Paediatrics, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
  4. 4 Paediatric Department, Penang General Hospital, Penang, Malaysia
  5. 5 Paediatric Department, Sabah Women and Children Hospital, Sabah, Malaysia
  6. 6 Paediatric Department, Hospital Raja Perempuan Zainab II, Kelantan, Malaysia
  1. Correspondence to Dr Choong Yi Fong, Division of Paediatric Neurology, Department of Paediatrics, Faculty of Medicine, University of Malaya, Kuala Lumpur 50603, Malaysia; cyfong{at}ummc.edu.my

Abstract

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.

  • quality of life
  • tuberous sclerosis
  • behaviour
  • psychosocial health
  • QOL
View Full Text

Statistics from Altmetric.com

Footnotes

  • Funding This study has received funds from the University of Malaya research grant (UMRG 532-13HTM).

  • Competing interests None declared.

  • Ethics approval The study was approved by the ethics committee from the UMMC Medical Ethics Committee (MECID: 20 158–1583) and the Ministry of Health Medical Research and Ethics Committee (NMRR ID: 15–1572-27021).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Patient consent for publication Not required.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.