Perrin

Information about PERRIN

The research program PERRIN (PEdiatric Rehabilitation Research in the Netherlands) consists of five closely related projects in three major themes
(1) course and determinants of activities and participation, (2) development
of instruments to measure these levels of functioning, and (3) description of rehabilitation programs. Using the International Classification of Functioning, Disability and Health (ICF) as a conceptual framework, activities and participation are the central concepts in the program.
Scant objective data are available to address the major questions asked
by every parent of a child with cerebral palsy (CP) or other motor disorders
with regard to functional abilities (at the level of activities and participation) and quality of life. Only information on functional prognosis will offer professionals tools for setting realistic goals in pediatric rehabilitation.
There is a need for longitudinal studies on the relation between (1) early
health condition, impairments, personal and contextual characteristics and
(2) later functioning and quality of life. In previous research, little attention
has been paid to the relation between contextual factors, such as family functioning and interventions, and later functioning. In general, studies focus solely on medical aspects or on (psycho)social aspects of disorders.

One of the goals of PERRIN is to improve our understanding of the course
of activity limitations, participation restrictions and quality of life in children
and adolescents with cerebral palsy. Children, adolescents and young adults,
in age ranging from 1 to 24 years old are followed during several years. In
order to measure activities and participation, special attention has been
paid to the selection and further development of measures that are
responsive to changes in personal and social functioning, and to the
description of rehabilitation programs.

Projects and progress so far (September 2012)

The first project, PERRIN PEDI, focuses on the adaptation of the PEDI (Pediatric Evaluation of Disability Inventory) for use in the Netherlands. The PEDI has been developed to measure functional status in children. The PEDI
has been translated in Dutch and reliability has been confirmed. Data of more than 1800 healthy Dutch children have been collected to compute standardised scores for the Dutch population. In 2005 the PEDI-NL has been published and in 2006 we have started to organize training workshops to help professionals to get familiar and to use the PEDI in clinical practice. See List of Publications
for relevant papers.

In four projects (PERRIN CP 0-5, PERRIN CP 5-9, PERRIN CP 9-16 and PERRIN CP 16-24) the second theme is being elaborated. More than 400 children, adolescents and young adults with cerebral palsy in four age-cohorts
(0-5 yrs, 5-9 yrs, 9-16 yrs and 16-24 yrs) are followed longitudinally to
obtain insight in their development of daily activities and participation, in relation to disorder characteristics, impairments, contextual characteristics
and personal characteristics. We have identified suitable measures and questionnaires to asses each child’s daily activities, and child’s and parents’ participation and quality of life. At this moments all projects have finished data-collection. Several PhD-theses and Publications have been published. See List of Publications for relevant papers published so far.

The sixth project, PERRIN ProCP, focuses on the third theme, the description and analysis of collaboration between rehabilitation professions, school, and parents in rehabilitation programs for children with cerebral palsy from 4 to 8 years old. Data have been analysed and published. See List of Publications for relevant papers.

At various international congresses researchers of PERRIN presented
the first results. See List of Publications for titles of abstracts and click to
see the posters.

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