Use of ICF to describe functioning and disability in children with brain tumours

Abstract

Purpose. To underline the importance of Environmental Factors for reducing Disability and to demonstrate the complex condition of life, especially in terms of social inclusion and participation for children and adolescents affected by brain tumour.

Method. An observational study applying the ICF version for Children and Youth (ICF-CY), the quality of life KIDSCREEN questionnaires and the Vineland assessment was performed. Age-specific ICF-CY Questionnaires were used to interview children at three time-points.

Results. Twenty-nine children were enrolled. Social life and relationships were crucial for defining children's disability level: formal and informal relationships showed to be very relevant to improve functioning (presence of facilitators in terms of more that 20% of cases). The severity of the disease makes the attention deeply focussed on treatment, neglecting other very important aspects in children's or adolescents' life such as their participation in life.

Conclusions. The project highlighted some relevant issues about functioning and disability of these patients, in light of ICF's Biopsychosocial model of disability. Different rehabilitation projects are necessary for children and adolescents living after brain tumour. Considering treatment and the severity of tumour is very important to define pathways that should also include social and interpersonal aspects.

Keywords:

• Brain tumour
• children with disability
• international classification of disease
• nervous system disease
• public health care
• rehabilitation

Acknowledgements

This work was supported by a grant from (RF ex art. 56) the Italian Ministry for Health for 2006–2008. The authors thank all the partners and the collaborators of the units that collected data and the Neurology, Public health, Disability Unit of Besta Foundation that coordinated the research. The authors would like to thank Marcella Spano for language revision.