Study protocol: Determinants of participation and quality of life of adolescents with cerebral palsy: a longitudinal study (SPARCLE2)

Colver, Allan F.; Dickinson, Heather O.
January 2010
BMC Public Health;2010, Vol. 10 Issue 1, p280
Academic Journal
Background: Children and adults with impairments such as cerebral palsy have lower participation in life situations than able-bodied people. Less is known about their subjective perception of their lives, called their quality of life. During adolescence, rapid physical and psychological changes occur; although these may be more difficult for disabled than for able-bodied adolescents, little research has examined the lives of disabled adolescents. In 2003-4 a European Union funded project, SPARCLE, visited 818 children aged 8-12 years with cerebral palsy, sampled from population-based registers in nine European regions. The quality of life reported by these disabled children was similar to that of the general population but their participation was lower; levels of participation varied between countries even for children with similar severity of cerebral palsy. We are currently following up these children, now aged 13-17 years, to identify (i) to what extent contemporaneous factors (pain, impairment, psychological health and parental stress) predict their participation and quality of life, (ii) what factors modify how participation and quality of life at age 8-12 years are associated with participation and quality of life in adolescence, and (iii) whether differences between European countries in participation and quality of life can be explained by variations in environmental factors. Methods/Design: Trained researchers will visit families to administer questionnaires to capture the adolescents' type and severity of impairment, socio-demographic characteristics, participation, quality of life, psychological health, pain, environmental access and parental stress. We will use multivariable models (linear, logistic or ordinal) to assess how adolescent participation, quality of life, psychological health, pain, environmental access and parental stress, vary with impairment and socio-demographic characteristics and, where possible, how these outcomes compare with general population data. For participation and quality of life, longitudinal analyses will assess to what extent these are predicted by corresponding levels in childhood and what factors modify this relationship. Structural equation modelling will be used to identify indirect relationships mediated by other factors.


Related Articles

  • PERCEPÇÃO DE MÃES ACERCA DA QUALIDADE DE VIDA DE CRIANÇAS COM PARALISIA CEREBRAL. Vasconcelos, Viviane Mamede; Frota, Mirna Albuquerque; Pinheiro, Ana Karina Bezerra; Gonçalves, Marcelo Luiz Carvalho // Cogitare Enfermagem;abr-jun2010, Vol. 15 Issue 2, p238 

    An exploratory qualitative study aiming to know mothers' perception of quality of life of the child with cerebral palsy was developed. Data were collected through semi-structured interviews with 20 mothers of children aged 2- 7 years who were in attendance at the Center for Treatment and Early...

  • Cerebral Palsy: Early Diagnosis, Intervention and Risk Factors. Naletilić, Mladenka; Tomić, Vajdana; Sabić, Marina; Vlaka, Tonko // Collegium Antropologicum;2009 Supplement 2, Vol. 33, p59 

    Early diagnosis and intervention intensity were suggested to be crucial factor in cerebral palsy (CP) treatment. Herein we observed 347 children diagnosed for CP in Clinical Hospital Mostar, Bosnia and Herzegovina, and studied the relationship between (a) intervention start point and the final...

  • A prospective, longitudinal study of growth, nutrition and sedentary behaviour in young children with cerebral palsy. Bell, Kristie L.; Boyd, Roslyn N.; Tweedy, Sean M.; Weir, Kelly A.; Stevenson, Richard D.; Davies, Peter S. W. // BMC Public Health;2010, Vol. 10 Issue 1, p179 

    Background: Cerebral palsy is the most common cause of physical disability in childhood, occurring in one in 500 children. It is caused by a static brain lesion in the neonatal period leading to a range of activity limitations. Oral motor and swallowing dysfunction, poor nutritional status and...

  • Dynamic Resources Used in Ambulation by Children With Spastic Hemiplegic Cerebral Palsy: Relationship to Kinematics, Energetics, and Asymmetries. Fonseca, Sérgio T.; Holt, Kenneth G.; Fetters, Linda; Saltzman, Elliot // Physical Therapy;Apr2004, Vol. 84 Issue 4, p344 

    Presents a study that explored how the requirements of the task and the energy-generating and energy-conserving capabilities of children with cerebral palsy relate to kinematic and mechanical energy patterns of walking. Methods; Results; Discussion; Conclusion.

  • 10-metre Shuttle Run Test. Verschuren, Olaf; Takken, Tim // Journal of Physiotherapy (Australian Physiotherapy Association);2010, Vol. 56 Issue 2, p136 

    The article focuses on the 10-metre shuttle run test suited for the children with cerebral palsy and identified by the Gross Motor Function Classification System (GMFCS) at Level I or II. It states that the Level I shuttle test (SRT-I) suitable for children who could walk without limitations...

  • Age at Referral of Children for Initial Diagnosis of Cerebral Palsy and Rehabilitation. Hubermann, Lara; Boychuck, Zachary; Shevell, Michael; Majnemer, Annette // Journal of Child Neurology;Mar2016, Vol. 31 Issue 3, p364 

    Objectives: This study describes current practices in the age at referral for diagnosis of cerebral palsy and factors that influence earlier referral. Study Design: Retrospective chart review (2002-2012). Results: Of 103 children referred for diagnosis, 81 were referred to a neurologist by other...

  • Roles of Reflex Activity and Co-contraction During Assessments of Spasticity of the Knee Flexor and Knee Extensor Muscles in Children With Cerebral Palsy and Different Functional Levels. Peirce, Samuel R.; Barbe, Mary F.; Barr, Ann E.; Shewokis, Patricia A.; Lauer, Richard T. // Physical Therapy;Oct2008, Vol. 88 Issue 10, p1124 

    Background and Purpose. Spasticity is a common impairment in children with cerebral palsy (CP). The purpose of this study was to examine differences in passive resistive torque, reflex activity, coactivation, and reciprocal facilitation during assessments of the spasticity of knee flexor and...

  • Life Changing Moment. Boevers, Michelle // Exceptional Parent;Sep2002, Vol. 32 Issue 9, p124 

    Focuses on the inspiration from a boy with cerebral palsy in the U.S. Lessons in loving people; Importance of diversity; Management of critical life situations.

  • Persistence of Cerebral Palsy Diagnosis. Korzeniewski, Steven J.; Feldman, Judith F.; Lorenz, John M.; Pinto-Martin, Jennifer A.; Whitaker, Agnes H.; Paneth, Nigel // Journal of Child Neurology;Mar2016, Vol. 31 Issue 4, p461 

    We examined the stability of nondisabling and disabling cerebral palsy at age 2 in a longitudinally followed tri-county low-birth-weight (<2000 g) birth cohort. A total of 1105 newborns were enrolled, 901 (81.5%) survived to age 2, and 86% (n = 777) were followed up. Of the 113 cerebral palsy...


Read the Article


Sorry, but this item is not currently available from your library.

Try another library?
Sign out of this library

Other Topics