Le CPC est une infrastructure visant à faciliter le transfert et la diffusion des connaissances. Cette rubrique vise à faire connaître des projets de recherche qui ont cours au Québec et ailleurs en lien avec la participation sociale des enfants ayant une déficience motrice cérébrale. Les projets de recherche sont regroupés selon les thèmes associés au processus de production du handicap (PPH), soit :

• les facteurs personnels;
• les déterminants environnementaux;
• la participation sociale.

En tant que membre du CPC vous pouvez faire connaître vos projets traitant de cette problématique. Pour ce faire, envoyez une brève description du projet, une liste des collaborateurs, les sources de financement ainsi que les dates de réalisation du projet. Voici deux façons de faire parvenir ces informations :

• par courriel : info@consortiumpc.ca
• par courrier :
  Consortium en Paralysie Cérébrale (CPC),
  525, boul. Hamel, bureau H-1708,
  Québec (Québec) G1M 2S8.

Cliquez sur le schéma pour l'afficher en grande taille.

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.

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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.

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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.

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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.

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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.

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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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Projet artistique pour les jeunes vivant avec des incapacités

Depuis octobre 2005, des ateliers d'art visuel sont organisés à l'initiative d'intervenants de l'IRDPQ (Institut de réadaptation en déficience physique de Québec). La réalisation de ce projet artistique se fait en collaboration avec des jeunes recevant des services de l'IRDPQ, des bénévoles et la Maison des jeunes de Vanier. Les ateliers sont offerts aux adolescents (12-16 ans) inscrits en réadaptation à l'IRDPQ et aux jeunes fréquentant la Maison des jeunes de Vanier. Une partie des activités a lieu à la Maison des jeunes. Des ateliers sont offerts à l'hiver 2006.

L'objectif premier du projet  est de favoriser une meilleure participation sociale des jeunes vivant avec une incapacité. La participation des jeunes à un tel projet leur permet de vivre une expérience enrichissante où ils peuvent exploiter leurs talents et s'épanouir par le biais des arts. Ce projet favorise aussi la création de liens entre les jeunes et encourage une meilleure connaissance des milieux de la réadaptation, associatif et communautaire.  Finalement, une activité de ce type sensibilise les organismes communautaires aux besoins des jeunes ayant une incapacité et favorise le développement de services adaptés pour ces jeunes.

Les membres du comité organisateur du projet artistique à l'IRDPQ sont:
Valérie Bédard (jeune), Marie-Pier Bouchard (jeune), Marie-Pier Cliche (jeune), Jacinthe Côté (éducatrice IRDPQ), Claudine Grenier (orthophoniste IRDPQ), Marie Le Bourdais (travailleuse sociale IRDPQ), Luce Leclerc (travailleuse sociale IRDPQ) et Jacinthe Peloquin (éducatrice IRDPQ).

Liste des activités se déroulant à l'extérieur des murs des centres de réadaptation du Québec

Pour obtenir davantage d'informations concernant les activités se déroulant dans votre région, contactez le centre de réadaptation le plus près de chez vous.

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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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