Description and psychometric properties of the CP QOL-Teen: A quality of life questionnaire for adolescents with cerebral palsy

Davis, Elise; Mackinnon, Andrew; Davern, Melanie; Boyd, Roslyn N.; Bohanna, India; Waters, Elizabeth; Graham, H Kerr; Reid, Susan M; Reddihough, Dinah

doi:10.1016/j.ridd.2012.08.018

Cited by 66 publications

(68 citation statements)

References 25 publications

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“…This will be observed as a between group difference of five points or more in each domain at T2 (10 weeks- efficacy) and T3 (26 weeks- retention) [64-67]. …”

Section: Methodsmentioning

confidence: 99%

GRIN: “GRoup versus INdividual physiotherapy following lower limb intra-muscular Botulinum Toxin-A injections for ambulant children with cerebral palsy: an assessor-masked randomised comparison trial”: study protocol

et al. 2014

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BackgroundCerebral palsy is the most common cause of physical disability in childhood. Spasticity is a significant contributor to the secondary impairments impacting functional performance and participation. The most common lower limb spasticity management is focal intramuscular injections of Botulinum Toxin-Type A accompanied by individually-delivered (one on one) physiotherapy rehabilitation. With increasing emphasis on improving goal-directed functional activity and participation within a family-centred framework, it is timely to explore whether physiotherapy provided in a group could achieve comparable outcomes, encouraging providers to offer flexible models of physiotherapy delivery. This study aims to compare individual to group-based physiotherapy following intramuscular Botulinum Toxin-A injections to the lower limbs for ambulant children with cerebral palsy aged four to fourteen years.Methods/DesignAn assessor-masked, block randomised comparison trial will be conducted with random allocation to either group-based or individual physiotherapy. A sample size of 30 (15 in each study arm) will be recruited. Both groups will receive six hours of direct therapy following Botulinum Toxin-A injections in either an individual or group format with additional home programme activities (three exercises to be performed three times a week). Study groups will be compared at baseline (T1), then at 10 weeks (T2, efficacy) and 26 weeks (T3, retention) post Botulinum Toxin-A injections. Primary outcomes will be caregiver/s perception of and satisfaction with their child’s occupational performance goals (Canadian Occupational Performance Measure) and quality of gait (Edinburgh Visual Gait Score) with a range of secondary outcomes across domains of the International Classification of Disability, Functioning and Health.DiscussionThis paper outlines the study protocol including theoretical basis, study hypotheses and outcome measures for this assessor-masked, randomised comparison trial comparing group versus individual models of physiotherapy following intramuscular injections of Botulinum Toxin-A to the lower limbs for ambulant children with cerebral palsy.Trial registrationACTRN12611000454976

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“…This will be observed as a between group difference of five points or more in each domain at T2 (10 weeks- efficacy) and T3 (26 weeks- retention) [64-67]. …”

Section: Methodsmentioning

confidence: 99%

GRIN: “GRoup versus INdividual physiotherapy following lower limb intra-muscular Botulinum Toxin-A injections for ambulant children with cerebral palsy: an assessor-masked randomised comparison trial”: study protocol

et al. 2014

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“…[40][41][42][43][44][45][46] and adolescent report (r=0.58-0.68) were correlated with a generic QOL instrument. 99 Environmental and personal factors A study questionnaire was developed to capture demographic information that has been shown in the literature to influence a child's participation. These include family ethnicity, household income, parental education and employment, family structure and supports and family interests.…”

Section: Strengths and Difficulties Questionnairementioning

confidence: 99%

Move it to improve it (Mitii): study protocol of a randomised controlled trial of a novel web-based multimodal training program for children and adolescents with cerebral palsy

et al. 2013

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IntroductionPersons with cerebral palsy require a lifetime of costly and resource intensive interventions which are often limited by equity of access. With increasing burden being placed on health systems, new methods to deliver intensive rehabilitation therapies are needed. Move it to improve it (Mitii) is an internet-based multimodal programme comprising upper-limb and cognitive training with physical activity. It can be accessed in the client's home at their convenience. The proposed study aims to test the efficacy of Mitii in improving upper-limb function and motor planning. Additionally, this study hopes to further our understanding of the central neurovascular mechanisms underlying the proposed changes and determine the cost effectiveness of Mitii.Methods and analysisChildren with congenital hemiplegia will be recruited to participate in this waitlist control, matched pairs, single-blind randomised trial. Children be matched at baseline and randomly allocated to receive 20 weeks of 30 min of daily Mitii training immediately, or waitlisted for 20 weeks before receiving the same Mitii training (potential total dose=70 h). Outcomes will be assessed at 20 weeks after the start of Mitii, and retention effects tested at 40 weeks. The primary outcomes will be the Assessment of Motor and Process Skills (AMPS), the Assisting Hand Assessment (AHA) and unimanual upper-limb capacity using the Jebsen-Taylor Test of Hand Function (JTTHF). Advanced brain imaging will assess use-dependant neuroplasticity. Measures of body structure and functions, activity, participation and quality of life will be used to assess Mitii efficacy across all domains of the International Classification of Functioning, Disability and Health framework.Ethics and disseminationThis project has received Ethics Approval from the Medical Ethics Committee of The University of Queensland (2011000608) and the Royal Children's Hospital Brisbane (HREC/11/QRCH/35). Findings will be disseminated widely through conference presentations, seminars and peer-reviewed scientific journals.Trial registrationACTRN12611001174976

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“…In the quality of life literature, however, there are some concerns regarding the cognitive maturity of children to answer more complex questions related to different aspects of their quality of life (Davis et al, 2013), and these same issues are present when attempting to measure motivation. To address this, the DMQ has parallel versions of the assessment to capture both parent and child perspectives of mastery motivation.…”

Section: Introductionmentioning

confidence: 99%

The Dimensions of Mastery Questionnaire in School-Aged Children with Congenital Hemiplegia: Test–Retest Reproducibility and Parent–Child Concordance

Miller¹,

Marnane²,

Ziviani³

et al. 2013

Physical & Occupational Therapy In Pediatrics

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Description and psychometric properties of the CP QOL-Teen: A quality of life questionnaire for adolescents with cerebral palsy

Cited by 66 publications

References 25 publications

GRIN: “GRoup versus INdividual physiotherapy following lower limb intra-muscular Botulinum Toxin-A injections for ambulant children with cerebral palsy: an assessor-masked randomised comparison trial”: study protocol

GRIN: “GRoup versus INdividual physiotherapy following lower limb intra-muscular Botulinum Toxin-A injections for ambulant children with cerebral palsy: an assessor-masked randomised comparison trial”: study protocol

Move it to improve it (Mitii): study protocol of a randomised controlled trial of a novel web-based multimodal training program for children and adolescents with cerebral palsy

The Dimensions of Mastery Questionnaire in School-Aged Children with Congenital Hemiplegia: Test–Retest Reproducibility and Parent–Child Concordance

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