Cerebral palsy is the commonest cause of physical impairment in childhood and associated with cognitive and sensory impairments. It occurs in 1 in 500 births, or 10,000 new cases a year in the EU. Children with cerebral palsy continue to be seriously disadvantaged with respect to social relationships, education and employment prospects, even though there are infrastructures and systems in place in every European country to respond to the child’s and families’ needs. Such arrangements are called Environmental Factors in the International Classification of Functioning, Disability and Health: Final Draft ICIDH-2 (World Health Organisation 2001) and are defined as the physical, social and attitudinal environment in which people live and conduct their lives. Environmental factors include factors such as arrangements for educational provision, social attitudes and norms, legislation on access to buildings, anti-discrimination legislation, transport design, rehabilitation and therapeutic services and assistive technology.
Within any one locality or even country, environmental factors are relatively constant but between countries they vary considerably. A preliminary survey amongst the collaborating partners has confirmed that there are major differences in environmental factors between the participating EU countries. For instance, one third of the centres must provide wheelchair access to trains by law; one third must allow access to cinemas but they are different centres to those previously mentioned. There are also wide variations in financial benefits and availability of specialised services. However, a systematic description and assessment of relevant environmental factors across different countries has not been undertaken before. In order to determine which actually work it is necessary to evaluate environmental factors against a well-defined outcome.
A collaboration of 14 cerebral palsy registers in European countries exists, funded by the EU. Each register covers all children in a defined geographical area, and each child is categorised for impairment, by type and extent. Those involved in the collaborative register realised that children with similar severity of impairment progress very differently and that this appears to relate to some obvious environmental factors such as educational provision and possibly to others not systematically studied or recorded. There are two outcomes that can be used to assess different models of provision for children with disability. The first is what the child does (Participation) and the second is how the child feels (Quality of Life). Participation is an objective measure of health status whereas Quality of Life is a subjective measure of health status.
Although the concept of participation has been well articulated for over 20 years, there have been few attempts to operationalise it, and particularly so for children. This was partly because ICIDH was criticised for being too medical and not taking the social construction of disability sufficiently into account (Shakespeare 1992). However, the Final Draft of ICIDH 2 has largely reconciled this by the formal introduction of contextual factors. The Final Draft ICIDH-2 classifies participation as follows: learning and applying knowledge, general tasks and demands, communication, mobility, self-care, domestic life, interpersonal interactions and relationships, major life areas and community, social and civic life.
Past research has tended to rely on parents’ perceptions of their child’s quality of life, but it is now recognised that children’s view should be sought directly rather than being inferred from indirect reports. Measurement of quality of life in children has also lagged behind because of conceptual and practical difficulties such as the reliability of children’s self reports, and the different values which children place on particular health states as compared to adults (Jenney, Kane et al. 1995; Jenney and Campbell 1997). Early work has also tended to develop measures specific to particular diseases such as cancer (Eiser, Haverman et al. 1995) and asthma (Christie, French et al. 1993) for the purpose of contributing to the evaluation of medical interventions. There is now the need to measure quality of life in children with relatively stable impairment whose health status and quality of life are likely to be influenced more by social and educational environmental factors than by medical interventions. In addition, although a number of qualitative studies asking disabled children and their families to report their experience have yielded important insights into the lives and views of such children (Quine and Pahl 1989; Watson 1999), larger populations of disabled children should now be studied to determine how much participation and quality of life varies between children with comparable severity of impairment, and compared to children without impairment.
This study is taking advantage of the European collaboration of cerebral palsy registers so that relationships identified between environmental factors and outcome (participation and quality of life) can be compared across different countries. It is epidemiologically sound because the registers cover all children in particularly areas and involve sufficient numbers of children on which to base statistically sound conclusions.
The study aims to identify which environmental factors, if improved, will yield the greatest benefits for children with disabilities and their families. This knowledge will inform EU policy in the health, educational and social sectors and generate protocols to optimise outcomes.
The principal hypothesis is that children with similar severity of impairment will experience variable outcomes in different countries due to variation in environmental factors.
Objectives
a) To generate knowledge about optimal environments for children with disability to inform EU policy in the health, educational and social sectors.
b) To generate protocols for carers and professionals to optimise participation and quality of life.
c) To interest children and families in a future study to test the hypothesis that successful management of environmental factors has long-term impact into adult life on health, participation, quality of life and roll and function in the labour market
Children aged 8-12 years will be drawn from cerebral palsy registers in 8 centres in Europe: Denmark, France (2 centres), Ireland (2 centres), Italy, Sweden and UK. Those on the register within the age range will be stratified in advance according to severity of impairment.
The study will also collect data on non-disabled children in each country to:
a) determine how much participation varies between disabled and non-disabled children, and whether there are differences between countries.
b) determine whether quality of life varies between disabled and non-disabled children.
The following aspects will be investigated:
a) Personal factors
The study will measure personal factors which are potentially confounding such as parental stress and life events, and the child’s personal characteristics.
b) Environmental factors
The study will measure environmental factors that are relevant to the majority of children with cerebral palsy, and that can be used in an analysis where the factors are used as explanatory independent variables.
The study will describe and quantify environmental factors at two levels:
(i) at national level such as anti-discrimination legislation
A literature and publications review will be conducted between June 2003 and June 2004 by a sub-contracted social scientist in Edinburgh. It will examine environmental factors at a national macro level by reviewing research literature, EU publications, international reports and European government publications. It will bring together up-to-date information about how environmental factors vary between European countries, mainly concentrating on the countries in the study but will include all those in the EU and those seeking membership.
(ii) at local level such as availability of respite care and family experience level such as ease of access to cinemas and sports facilities
We are still not sure how easy it will be to obtain objective measures at local level of the disability friendliness of environments. This should be clearer once the macro level review and the focus group work (see below) is complete. However we are aware of instruments which measure the school environment, the home environment and the transport environment.
Following a literature review (Mihaylov et al 2004) and pilot study which was completed in April 2003, focus groups were conducted with parents in each country to discuss environmental factors relevant to their child’s disability. This information was used to generate items for an instrument to record the experiences of families of the relevant environment factors, an instrument now being used in our study.
c) Quality of Life
Quality of life will be reported by the children themselves wherever possible using a generic instrument, KIDSCREEN (Ravens-Sieberer et al 2001), so that quality of life can be assessed in the same context and with the same instrument in all children. KIDSCREEN is ideal for SPARCLE because it has been developed in a European context and its items are derived from children's own reports.
Children with severe cognitive difficulties will not be able to self-report and for this group of children we will use the parent completion KIDSCREEN and CHQ-PF50, and the child's teacher/therapist will also be asked to complete these questionnaires. There is debate as to whether proxy report is appropriate for measuring quality of life, but it is preferable to excluding this group of children from the study.
d) Participation
The study will use the Assessment of Life Habits for children (LIFE-H). The LIFE-H was developed to evaluate aspects related to social participation in individuals with disability, without taking into account the type of underlying impairments. It is based on the classification of the Disability Creation Process (Fougeyrollas et al, 1998) – a classification which strongly influenced the ICF (World Health Organisation, 2001). The LIFE-H has been used in children with cerebral palsy (Lepage et al 1998), and was validated in 2002 on 8-12 year old children by a team of researchers in Quebec.
e) Child impairment
A descriptive instrument for child impairment is needed and will combine the classification presently used by the cerebral palsy collaborative group and the Gross Motor Classification System (Palisano, Rosenbaum et al. 1995).
Local dissemination in each country will begin to parents, children, voluntary organisations and health and social service departments in year two. Central dissemination with findings will take place later to key EU committees, international conferences, journals and so on. Papers will be written for non-English as well as English ones.
We have assessed the Participation and Quality of Life of 1200 children
with cerebral palsy across Europe.
We have described and quantified environmental factors relevant to
children with cerebral palsy across Europe.
We have developed a statistical model to represent how these environmental factors
influence Participation and Quality of Life.
We have made recommendations about the optimal environment; and
these will hopefully influence social policy development by the European
Commission.
References
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