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The CPC is an infrastructure aiming to facilitate
the exchange and dissemination of knowledge. This section's goal is to
let people know about ongoing research projects happening in
Québec and elsewhere, pertaining to the social participation of
children living with cerebral palsy.
The research projects are organized according to
themes as a function of their role in the process of
handicap production (PHP).
- Issues that focus on personal characteristics
of individuals
- Environmental and contextual issues
- Social Participation
As a CPC member, you may have your specific
projects described on the website. If you wish to do so, send a brief
description of the project, the names of all collaborators, the names
of funding organizations that are supporting your work, and the
projects' production dates to either one of the following two addresses:
- E-mail: info@consortiumpc.ca
- Mail:
Cerebral Palsy Consortium (CPC)
525, boul. Hamel, suite H-1708
Québec (Québec)
G1M 2S8
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Research
projects presented in the International
Cerebral Palsy Conference.
Oulu, Finland, February 2-5, 2006
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On the origin and preventability of Cerebral
Palsy: Epidemiologic evidence
Chercheur:
Karine B. Nelson, MD, PhD
NIH / NINDS, USA
For a long time it was thought that birth asphyxia
was the major cause of cerebral palsy (CP), and an important cause also
of other developmental disorders in children. Evidence available
in early 2006 indicates that asphyxial birth is a minor cause of CP and
not a substantial contributor to other neurologic disability in
children without CP. Efforts to prevent asphyxia-related CP by the use
of electronic fetal monitoring (cardiotocography) in labor have not
succeeded in reducing the frequency of CP in any birth weight group,
but have been associated with an increased rateof obstetrical
intervention including surgical delivery during active labor. Research
in the past two decades has identified more common contributors to CP
in term and near-term infants, notably perinatal stroke (ischemic
occlusion of cerebral arteries in the fetus or newborn) and exposure in
utero to infection or inflammation. Recent efforts at secondary
prevention of CP in term infants with hypothermia, and primary
prevention in very premature infants with administration of MgS04, are
encouraging. We have as yet no tools shown to be effective at primary
prevention of the small proportion of CP that is related to birth
asphyxia.
Development of an adolescent age band of the
Gross Motor Function Classification System
Chercheurs:
Robert Palisano(a,b), PT, ScD, Peter Rosenbaum(a) MD, PhD, Doreen
Bartlett (a,c), PT, PhD.
(a) CanChild Centre, McMaster University, Hamilton, On, Canada
(b) Drexel University, Philadelphia, PA, USA
(c) University of Western Ontario, London, ON, Canada
Objective:
The Gross Motor Function Classification System (GMFCS) for cerebral
palsy is validated for children < 12 years old of age. Extension of
the GMFCS through adolescence should have utility for assessment of
health care services and community resources for adolescents and young
adults with cerebral palsy. An iterative process involving analysis of
data and expert consensus is being used to create and validate an
adolescent age band. The purpose of this study was to create a
prototype for the adolescent age band through analysis of data from
Year One of a longitudinal study of mobility and self-care of
adolescents with cerebral palsy.
Methods:
The subjects were 229 adolescents with cerebral palsy, 11-18 years of
age. Subjects were selected from a population-based sample of children
with cerebral palsy in Ontario, Canada who had participated in a study
of gross motor development. Subjects were grouped based on GMFCS levels
from the previous study. The distribution of scores for items on the
Gross Motor Function Measure, the Activities Scale for Kids, and
self-reported methods of preferred mobility at home, school, outdoors,
and in the community were analyzed to generate descriptions for an
adolescent age band.
Results:
Adolescents previously classified in level I continue to walk in all
settings but may have difficulty balancing when moving in confined
spaces or carrying objects. Among adolescents previously classified in
level II, some have fewer limitations in walking while others require
assistance of a person or a mobility device, or use wheeled mobility
outdoors and in the community. Adolescents previously classified in
level III vary in methods of mobility. At home, most adolescents walk
(with or without support of a person or mobility device). At school,
adolescents may walk with a mobility device or use wheeled mobility
(self-propel, powered, transported). Among adolescents previously
classified in level IV, most use some form of wheeled mobility in all
settings. At home, many adolescents walk with support or use floor
mobility. Adolescents previously classified in level V are mostly
transported in wheelchair in all settings.
Conclusions:
Changes in mobility between childhood and adolescence occurred most
often in adolescents previously classified in levels II and III
especially when outdoors and in the community. The changes may partly
reflect choices based on the physical and social environment. The
findings require confirmation from Year 2 and 3 assessments.
A preliminary investigation of the role of the
upper limb during stair ascent in children with mild cerebral palsy:
biomechanical and clinical perspectives
Chercheurs:
Désirée B. Maltais PhD, PT, Bradford J. McFadyen PhD,
Francine Malouin PhD, PT, Carol L. Richards PhD, DU, PT.
Centre for Interdisciplinary Research in Rehabilitation and Social
Integration, Laval University, Quebec City, Canada.
Objectives:
To determine, for children with mild cerebral palsy (CP); 1) the role
of the upper limb during stair ascent, and 2) relationships between
stair locomotion (momentum and spatial-temporal variables) and clinical
measures of upper and lower limb muscle strength and walking skill.
Methods:
Fifteen, 7-12 yr old children with mild CP (Gross Motor Function
Classification System Level I) are participating in the study. Strength
of relevant upper and lower limb muscles is being determined
bilaterally using a hand-held dynamometer. Walking skill is being
assessed using the Walking, Running and Jumping Dimension of the Gross
Motor Function Measure and by determining comfortable and fast over
ground walking speeds. Kinematic and kinetic data are being collected
while children ascend a custom-made, 5-step, adjustable staircase at
their preferred speed. The participants ascend the stairs using four
different strategies: 1) a tandem (two feet on the same step) lower
limb strategy using handrail, 2) a reciprocal (one foot per step) lower
limb strategy using a handrail, 3) a tandem strategy without using a
handrail and, 4) a reciprocal strategy without using a handrail. The
children always lead with the lower limb ipsilateral to their dominant
upper limb and use the handrail with their dominant upper limb. A
two-way repeated measures ANOVA is being used to assess the effect of
the upper limb (handrail or no handrail use) and lower limb (tandem or
reciprocal pattern) strategies on stair locomotion during stair ascent.
The relationships between the stair locomotion variables and the
clinical measures of muscle strength and walking skill are being
analysed using linear correlation techniques. Multiple regression
analyses are being used to determine the relative importance of the
different gross motor skill and muscle strength variables with respect
to each locomotion variable (under the various stair ascent strategies).
Results:
- Faster without handrail
- Applied force at handrail mostly in backwards and downwards directions
- Maintain contact with handrail
- Clinical measures of muscle strength may predict handrail use:
Dominant ankle dorsiflexors / Dominant knee extensors.
The implementation of a Cerebral Palsy Registry
in the province of Québec, Canada
Chercheurs:
L Koclas(a) MD, C Lamarre(b) MD, L Dagenais(a) PT, M Shevell (a) MD
(a) McGill University, Montreal, Canada
(b) Université de Montréal, Montreal, Canada
Objectives:
The implementation of a cerebral Palsy (CP) Registry in the province of
Quebec will serve many objectives. With this registry we will be able
to estimate the prevalence and distribution of CP in Quebec, Canada.
Risk factors for CP will be identified. Research in this field will be
facilitated. We will also document the functional status of children
with CP. We anticipate that a registry may improve the quality of care
and the quality of life for children with CP and their families.
Methods:
A working group of clinicians and researchers was instituted in 1998. A
Delphi consensus was obtained for definition, classification and risk
factors for CP. To measure the severity of CP, the Gross Motor Function
Classification System for Cerebral Palsy (GMFCS) classification is
used. A pilot project was started in February 2005. Limited
inscriptions of patients from the rehabilitation centres started one
year later. All the collected data is transmitted via Internet to an
electronic data management firm via secure connection.
Results:
To date, 166 children born between January 15, 1999 and December 31,
2001 were registered in 6 of the 18 regions in Quebec.
The life long perspective of the progressive
functional limitations based on types of mobility among individuals
with cerebral palsy
Chercheurs:
T. Furui (a) PhD PT, M. Furui (b), K. Shiraishi (b)
(a) University of Pittsburgh, Pittsburgh PA, USA
(b) Office IL the Center of Independent Living, Kohriyama, Japan
Objectives:
To investigate the relationship between types of mobility and changes
in functional performance among ambulatory adults with cerebral palsy
(CP) from a life history perspective.
Methods:
Subjects were recruited through 18 Japanese supportive organizations
for people living with disabilities. Inclusion criteria were adults
with CP aged 38 or older who were ambulatory at age 18, were living in
the community, and with no obvious cognitive impairment. Standardized
interview, physical evaluation and data collection were all performed
while visiting at his/her home. Present mobility devices were noted
upon home visit, and device usage history was gathered through public
documents such as certificate of physical handicapped and others.
Developmental information, such as when walking began, were gathered
through medical records from children's hospitals, records from special
school dormitories, and other documentations after each subject was
consented. Subjects were divided into three groups based on changes in
the five levels of the Gross Motor Function Classification System
(GMFCS) between age 18 and at present: No change (GROUP 1), one or two
level decrease (GROUP 2), three or four level decrease (GROUP3).
Results:
Thirty-two adults total (16 female) participated in this study. Mean
age was 49.2 (±7.0), and 19 individuals were married, thirteen
single, or divorced. Majority (59.4%) of participants had dyskinetic
CP. Majority (53.1%) of present outdoor mobility types were Power
Mobility (PM). The average walking age in GROUP 1 was younger than
GROUP 2. The age individuals began using PM in GROUP 1 was younger than
GROUP2. GROUP 1 (n=4) used PM (18±6.9 years) longer than other
two groups (8.9±4.1 years, 9.2±4.9 years, respectively).
GROUP 3 had highest frequency of cervical problems. Factors leading to
the loss of independent walking included four individuals, all in
Group3, with fracture or falls caused by traffic accidents because poor
balance. Some of the GROUP 3 participants commented they attempted to
walk despite becoming marginal ambulators because they felt PM was lazy
approach to living independently.
Conclusions:
Those who had drastically progressive functional limitations tended to
delay or abandon the use of mobility devices. Nevertheless, PM was
unexpectedly used by over 50% of participants and appeared to be the
optimal choice mobility for individuals living with CP long term.
Consequently, successful mobility transition is a key to minimize
functional limitations among ambulatory individuals with CP.
Family Assessment of the Activities and
Participation of Children with Cerebral Palsy
Chercheurs:
C. Morris (a), P. Rosenbaum (b), JJ. Kurinczuk (a), R. Fitzpatrick (a)
(a) University of Oxford, UK
(b) McMaster University, Canada
Objective:
To measure the 'activities and participation' of children with cerebral
palsy, as defined by the International Classification of Functioning,
Disability and Health (ICF), using family assessed instruments.
Methods:
A structured review of family assessed instruments appropriate for
measuring children's activities and participation' was undertaken to
identify questionnaires for use in a postal survey. Indices of
children's 'activities and participation' were family assessment of the
Gross Motor Function (GMFCS) and Manual Ability (MACS) Classification
Systems, the Activities Scale for Kinds (ASK) and Lifestyle Assessment
Questionnaire (LAQ-CP). Classification of children.s GMFCS and MACS
were also gathered from health professionals nominated by families. The
study population was a complete geographically defined population of
children with cerebral palsy between 6 and 12 years old, identified
from the 4Child epidemiological database in Oxford, UK. Details of
children's impairments, recorded by 4Child when the child was 5 years,
were used as explanatory variables in multiple regression analyses to
identify the effect of specific disabilities on children's 'activities
and participation'.
Results:
Families of 129/314 (40%) of the children invited to be part of this
study participated in the survey. These children did not differ from
children who did not participate by their age, gender or type and
distribution of their cerebral palsy. Children of participating
families had marginally better upper and lower limb function and less
severe intellectual delay than non-participants, although these
differences were not statistically significant. Families' rating for
the GMFCS and MACS were highly reliable compared to those of health
professionals. The ASK and LAQ-CP instruments performed with good
internal reliability and were generally acceptable to families, though
notably the ASK was idendified as unsuitable for children in GMFCS
Level V. Scores for tes ASK and LAQ-CP domains, representing children's
activities and participation, were best predicted by the GMFCS, MACS
and intellectual disability, although seizures and speech problems were
also predictive of restrictions for the ASK and the LAQ-CP mobility and
physical independence domains.
Conclusions:
Family assessments of children's movement and manual abilities using
the GMFCS and MACS were highly reliable compared to those made by
health professionals. In concordance with similar studies that have
used professionally assessed measures, children's activities and
participation were most adversely affected by movement, manual and
intellectual disabilities. Family assessment offers a highly reliable
method for measuring children's activities and participation; however
currently available instruments do not fully represent all the domains
in the ICF.
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Other research projects in the
province of Québec |
Projet Interaxe
Élaboration d'une grille
d'évaluation multidisciplinaire des projets extra-muraux visant
la participation sociale des enfants vivant avec une déficience
motrice cérébrale (DMC)
Chercheurs: Francine Malouin, Ph.D.,
Chantal Bard, Ph.D., Cyril Schneider, Ph.D., Donna Anderson, Ph.D. et
Line Nadeau, Ph.D.
Cliniciennes co-chercheures: Chantale Ferland,
pht et Marie Lebourdais, ts
Collaboration: Désirée Maltais,
Ph.D. et Serge Dumont, Ph.D.
Subvention: Programme de subvention de
recherche inter-axes 2004-2005, CIRRIS
Début du projet: Février 2005
L'objectif de ce projet est d'effectuer la
première étape d'une démarche d'évaluation
de l'efficacité des projets extra-muraux élaborés
par les programmes DMC des différents centres de
réadaptation au Québec. Plus spécifiquement, cette
recherche vise à rassembler l'expertise de chercheurs et
d'intervenants afin de développer une grille questionnaire
décrivant le type et la nature des projets se déroulant
à l'extérieur des centres de réadaptation.
L'expertise de cette équipe multidisciplinaire permettra ainsi
d'atteindre deux objectifs. D'abord d'élaborer des questions
spécifiques visant à connaître les objectifs
poursuivis sur le plan fonctionnel et sur le plan de la participation
sociale et les moyens utilisés pour répondre à ces
objectifs, les limites relevées, les résultats
observés et les ressources mobilisées. Ensuite d'analyser
les données recueillies à la lumière des
connaissances actuelles dans les domaines visés.
Le résultat de
ce travail permettra de dégager les similarités entre les
projets des différents centres de réadaptation du
Québec et d'en identifier les obstacles, les limites et les
coûts. La diffusion de ces données se fera via le
présent site Internet. Cette diffusion servira également
de référence d'une part aux intervenants qui souhaitent
développer de tels projets et d'autre part, aux administrateurs
et aux représentants des instances décisionnelles qui
doivent établir les priorités à privilégier
en terme d'activités.
Ce projet
intègre ainsi les deux axes de recherche du CIRRIS, soit les
facteurs personnels et leurs déterminants ainsi que les facteurs
environnementaux et la participation sociale.
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Projet Participation sociale des adultes
Que font-ils? Que sont-ils devenus? Profil de la
participation sociale des adultes ayant une déficience motrice
cérébrale après leur passage à l'IRDPQ
(2975 chemin St-Louis)
Chercheurs: Normand Boucher, PhD., Carol L.
Richards, PhD., DU, Désirée Maltais, PhD.,
Clinicienne co-chercheur: Diane Corriveau, pht.
Collaborateur: Line Beauregard, PhD., Marielle
Pelletier, inf., Linda Pichard, pht, Dip (Admin), Francine Dumas, MSc,
pht et Michèle N. Robitaille, MD, FRCP(c)
Subvention: Programme de subvention de
recherche inter-axes 2004-2005, CIRRIS
Début du projet: Avril 2005
La situation actuelle
des adultes québécois ayant une déficience motrice
cérébrale (DMC) n'est pas bien connue et décrite.
La réalisation d'un portrait est essentielle afin de bien
comprendre la situation de ces personnes dans le contexte
québécois de l'organisation des services de santé
et des services sociaux. Le but de la présente étude est
de dresser le portrait de la situation des adultes ayant une DMC, au
plan physique et social, qui ont déjà reçu des
services de l'IRDPQ. Cette étude vise précisément
quatre objectifs. 1) Documenter la situation des personnes ayant une
DMC au plan des habitudes de vie. 2) Identifier les facteurs de
l'environnement qui agissent à titre d'obstacles et de
facilitateurs dans la réalisation des habitudes de vie des
personnes. 3) Établir le profil des facteurs personnels,
notamment au plan des aptitudes de la personne ayant une DMC. 4)
Déterminer l'influence des facteurs personnels et
environnementaux dans la réalisation des habitudes de vie. Par
l'entremise du service des archives, nous solliciterons des adultes
ayant une DMC à participer à l'étude. Des
entrevues téléphoniques utilisant notamment des
questionnaires fermés portant sur la réalisation des
habitudes de vie et la mesure de la qualité de l'environnement
seront réalisées. Un sous échantillon sera ensuite
constitué et les personnes seront invitées à venir
à l'IRDPQ pour diverses mesures portant sur leur santé et
leurs capacités physiques. Cet exercice nous permettra de mieux
connaître leurs besoins et d'améliorer l'organisation des
services spécialisés de réadaptation.
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