Determinants of functioning of adolescents and young adults with cerebral palsy

Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning. Method. In the CP Transition study, adolescents and young adults aged 16 – 20 years, diagnosed with CP without severe learning disabilities (n = 103) participated. In this group we assessed subject characteristics, i.e., age, type of CP, gross motor function (GMFCS), level of education as well as outcome measures on functioning in daily activities and social participation (Life Habits questionnaire, Vineland Adaptive Behavior Scale, Functional Independence Measure). Multivariate regression analyses were performed. Results. About 20 – 30% of the participants encountered restrictions in daily activities (mobility, self-care, nutrition) and social participation (taking responsibility, community living, leisure activities and employment). The GMFCS level, level of education, and age proved to be important determinants of functioning in daily activities and social participation, explaining 70% and 66% of the variance in outcome respectively. Conclusion. A significant number of adolescents and young adults with CP without severe learning disabilities are restricted in daily activities and social participation. These problems are mainly attributable to restricted gross motor functioning, a low level of education and younger age.

[1]  P. Grimaud [Cerebral palsy]. , 1972, Pediatrie.

[2]  The psychological and social adjustment of adolescents with cerebral palsy or spina bifida and hydrocephalus , 1979, International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation.

[3]  D. Cicchetti,et al.  Developing criteria for establishing interrater reliability of specific items: applications to assessment of adaptive behavior. , 1981, American journal of mental deficiency.

[4]  Dallas W. Anderson,et al.  PREVALENCE OF CEREBRAL PALSY IN THE BIRACIAL POPULATION OF COPlAH COUNN, MISSISSIPPI , 1984, Developmental medicine and child neurology.

[5]  Carl V. Granger,et al.  Advances in functional assessment for medical rehabilitation , 1986 .

[6]  W. Gordon,et al.  Impact of impairment on activity patterns of children. , 1987, Archives of physical medicine and rehabilitation.

[7]  B. Hamilton A uniform national data system for medical rehabilitation. , 1987 .

[8]  Andrew P. Thomas,et al.  Health care of physically handicapped young adults , 1987, British medical journal.

[9]  M. Resnick,et al.  Family and peer issues among adolescents with spina bifida and cerebral palsy. , 1991, Pediatrics.

[10]  C. Pratt,et al.  Leisure activities of adolescent school students: predictors of participation and interest. , 1991, Journal of adolescence.

[11]  T. Parmenter,et al.  The post‐school experiences of young people with a disability , 1991, International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation.

[12]  P. Kinnunen,et al.  SOCIAL OUTCOME OF HANDICAPPED CHILDREN AS ADULTS , 1991, Developmental medicine and child neurology.

[13]  L. Mutch,et al.  Cerebral Palsy Epidemiology: Where are We Now and Where are We Going? , 1992, Developmental medicine and child neurology.

[14]  D. Reddihough,et al.  The health care of young adults with cerebral palsy , 1993, The Medical journal of Australia.

[15]  Wayne A. Gordon,et al.  Characteristics and comparisons of functional assessment indices: Disability Rating Scale, Functional Independence Measure, and Functional Assessment Measure. , 1993 .

[16]  M. A. Chamberlain Physically handicapped school leavers. , 1993, Archives of disease in childhood.

[17]  G. Hagberg,et al.  The changing panorama of cerebral palsy in Sweden. VI. Prevalence and origin during the birth year period 1983–1986 , 1993, Acta paediatrica.

[18]  H. Ireys,et al.  Mental health of young adults with chronic illness: the mediating effect of perceived impact. , 1994, Journal of pediatric psychology.

[19]  P. Moffatt,et al.  Coping with disabilities: the perspective of young adults from different ethnic backgrounds in inner London. , 1994, Social science & medicine.

[20]  M. Fuhrer SUBJECTIVE WELL-BEING: IMPLICATIONS FOR MEDICAL REHABILITATION OUTCOMES AND MODELS OF DISABLEMENT , 1994, American journal of physical medicine & rehabilitation.

[21]  A. Hallum Disability and the transition to adulthood: issues for the disabled child, the family, and the pediatrician. , 1995, Current problems in pediatrics.

[22]  B Pentland,et al.  An inter-rater reliability study of the Functional Assessment Measure (FIM+FAM). , 1996, Disability and rehabilitation.

[23]  White Ph Resilience in children with disabilities--transition to adulthood. , 1996 .

[24]  P. White Resilience in children with disabilities--transition to adulthood. , 1996, The Journal of rheumatology.

[25]  R. Palisano,et al.  Development and reliability of a system to classify gross motor function in children with cerebral palsy , 1997, Developmental medicine and child neurology.

[26]  R. Stevenson,et al.  Cerebral palsy ‐the transition from youth to adulthood , 1997, Developmental medicine and child neurology.

[27]  M. Law,et al.  Occupation, Health and Well-Being , 1998 .

[28]  S. Donaghy,et al.  Interrater reliability of the Functional Assessment Measure in a brain injury rehabilitation program. , 1998, Archives of physical medicine and rehabilitation.

[29]  L. Noreau,et al.  Profile of handicap situations in children with cerebral palsy. , 1998, Scandinavian journal of rehabilitation medicine.

[30]  D. Strauss,et al.  Life expectancy of adults with cerebral palsy. , 2008, Developmental medicine and child neurology.

[31]  L. Mutch,et al.  Epidemiology of cerebral palsy in England and Scotland, 1984–9 , 1998, Archives of disease in childhood. Fetal and neonatal edition.

[32]  G St-Michel,et al.  Social consequences of long term impairments and disabilities: conceptual approach and assessment of handicap , 1998, International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation.

[33]  L. Noreau,et al.  Association between characteristics of locomotion and accomplishment of life habits in children with cerebral palsy. , 1998, Physical therapy.

[34]  R. Larson,et al.  How children and adolescents spend time across the world: work, play, and developmental opportunities. , 1999, Psychological bulletin.

[35]  G. Grimby,et al.  Dependence and perceived difficulty in activities of daily living in adults with cerebral palsy and spina bifida , 2000, Disability and rehabilitation.

[36]  C. Cans Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers , 2000, Developmental medicine and child neurology.

[37]  E. Wood,et al.  The Gross Motor Function Classification System for Cerebral Palsy: a study of reliability and stability over time , 2000, Developmental medicine and child neurology.

[38]  K P Murphy,et al.  Employment and social issues in adults with cerebral palsy. , 2000, Archives of physical medicine and rehabilitation.

[39]  A. Cantagallo,et al.  Assessing traumatic brain injury outcome measures for long-term follow-up of community-based individuals. , 2001, Archives of physical medicine and rehabilitation.

[40]  C Andersson,et al.  Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion , 2001, Developmental medicine and child neurology.

[41]  H J Stam,et al.  Functional level of young adults with cerebral palsy , 2001, Clinical rehabilitation.

[42]  A. Tennant,et al.  Factors determining participation in young adults with a physical disability: a pilot study , 2001, Clinical rehabilitation.

[43]  P. Scuffham,et al.  Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study , 2002, The Lancet.

[44]  Eva Beckung Pt,et al.  Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy , 2002 .

[45]  Eva Beckung,et al.  Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. , 2002, Developmental medicine and child neurology.

[46]  M. Law,et al.  Participation in the occupations of everyday life. , 2002, The American journal of occupational therapy : official publication of the American Occupational Therapy Association.

[47]  N. Vøllestad,et al.  Everyday functioning in young children with cerebral palsy: functional skills, caregiver assistance, and modifications of the environment. , 2003, Developmental medicine and child neurology.

[48]  Fatigue in adults with cerebral palsy in Norway compared with the general population , 2003, Developmental medicine and child neurology.

[49]  Gillian King,et al.  A Conceptual Model of the Factors Affecting the Recreation and Leisure Participation of Children with Disabilities , 2003, Physical & occupational therapy in pediatrics.

[50]  Eh Lee,et al.  Decreased Access to Health Care and Social Isolation among Young Adults with Cerebral Palsy after Leaving School , 2003, Journal of orthopaedic surgery.

[51]  D. Reddihough,et al.  The epidemiology and causes of cerebral palsy. , 2003, The Australian journal of physiotherapy.

[52]  J. Desrosiers,et al.  Validity of the Assessment of Life Habits in older adults. , 2004, Journal of rehabilitation medicine.

[53]  G. Grimby,et al.  Activity limitations in personal, domestic and vocational tasks: a study of adults with inborn and early acquired mobility disorders , 2004, Disability and rehabilitation.

[54]  N. Vøllestad,et al.  Motor impairments in young children with cerebral palsy: relationship to gross motor function and everyday activities. , 2004, Developmental medicine and child neurology.

[55]  J. Desrosiers,et al.  Measuring social participation: reliability of the LIFE-H in older adults with disabilities , 2004, Disability and rehabilitation.

[56]  J. Stanghelle,et al.  Musculoskeletal pain in adults with cerebral palsy compared with the general population. , 2004, Journal of rehabilitation medicine.

[57]  G. Grimby,et al.  Dependence in daily activities and life satisfaction in adult subjects with cerebral palsy or spina bifida: A follow-up study , 2004, Disability and rehabilitation.

[58]  K. Moons,et al.  Prevalence of cerebral palsy in The Netherlands (1977–1988) , 2001, European Journal of Epidemiology.

[59]  M. Conaway,et al.  Bodily pain and health-related quality of life in children with cerebral palsy. , 2004, Developmental medicine and child neurology.

[60]  W. Coster,et al.  Participation and activity performance of students with cerebral palsy within the school environment , 2005, Disability and rehabilitation.

[61]  H. Stam,et al.  The epidemiology of cerebral palsy: Incidence, impairments and risk factors , 2006, Disability and rehabilitation.

[62]  H Nazirah,et al.  THE APPLICATIONS OF INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH (ICF) BY WORLD HEALTH ORGANIZATION(WHO) IN REHABILITATION MEDICINE PRACTICE , 2007 .