Cerebral Palsy Research - USA

Interventions and Best Practice

Summary

Current Projects

  • Optimising motor learning of infants at high risk of cerebral palsy using environmental and goal oriented interventions
  • Upper limb casting and motor training: a randomised controlled trial
  • Cognition and bimanual upper limb performance in children with unilateral cerebral palsy
  • Exploring the effectiveness of Amazing Magic Clubs as bimanual therapy for children with hemiplegic cerebral palsy in Australia
  • Cerebral Palsy Check Up: providing the best service at the best time
  • Centre for Research Excellence in Cerebral Palsy: CRE-CP (NHMRC CRE)
  • iWHOTrial: a multi-centre randomised controlled trial of rigid wrist hand orthoses for young children with cerebral palsy
  • Minimising impairment: multicentre randomised controlled trials of upper limb splinting for children with cerebral palsy
  • Children with disabilities and their ability to cope: Frequency and severity of negative social events as a predictor of resilience
  • REACH: Randomised trial of Early Rehabilitation in Congenital Hemiplegia (NHMRC Project)
  • Emerging adults with cerebral palsy: the transition from adolescence to young adulthood
  • Development of an evidence-based casting protocol for children with cerebral palsy: a multicentre randomised controlled trial
  • Pain and sleep problems in young children with cerebral palsy

Completed projects

  • Assistive technology in the classroom for students with cerebral palsy: “The team approach, the number one key to making it successful”
  • Modified constraint-induced therapy for children with hemiplegic cerebral palsy: A randomized trial
  • Practitioners’ knowledge and beliefs about pain in cerebral palsy
  • Effectiveness of providing communication skills training and evidence based practice (EBP) training for challenging health professionals’ clinical decision making and outcomes of care
  • Pain, its impact and pain treatment in individuals with cerebral palsy study
  • Evaluation of the CAL (Competency, Assessment and Local Solutions) program, Fiji
  • Evaluation of a year five disability awareness package – Just like you!
  • International consensus statements for botulinum toxin
  • Is there a causal relationship between commonly used severity classifications and the assistive equipment needs of children with cerebral palsy?
  • Effectiveness of occupational therapy home program intervention for children with cerebral palsy: a double blinded randomised controlled trial
  • Psychometric properties of the Quality of Upper Extremity Skills Test (QUEST) for children with cerebral palsy

Current Projects

Optimising motor learning of infants at high risk of cerebral palsy using environmental and goal oriented interventions

Cerebral Palsy Alliance Investigators: Cathy Morgan, Iona Novak, Nadia Badawi

Co-Investigators: Russell Dale (University of Sydney), Andrea Guzzetta (University of Pisa, Italy)

This project explores the impact of an early intervention programme based on motor learning principles and environmental enrichment, and on the motor outcomes of infants identified as high risk of cerebral palsy. The study is a 2-arm randomised controlled trial of infants aged 3-4 months receiving intervention until one year of age. The 16 week data analysis is complete, 12 month data is collected, and the 2 year data collection is underway. Planning is underway for a Phase 3 trial.

Publications:
Morgan C, Novak I, Dale RC, Badawi N. Optimising motor learning in infants at high risk of cerebral palsy: a pilot study. BMC Pediatrics. 2015;15(1):30.

Morgan C, Novak I, Dale RC, Guzzetta A, Badawi N. GAME (Goals – Activity – Motor Enrichment): protocol of a single blind randomised controlled trial of motor training, parent education and environmental enrichment for infants at high risk of cerebral palsy. BMC Neurology. 2014;14(1):203.

Morgan C, Novak I, Badawi N. Enriched environments and motor outcomes in cerebral palsy: systematic review and meta-analysis. Pediatrics. 2013;132(3):e735-e46.


Upper limb casting and motor training: a randomised controlled trial

Cerebral Palsy Alliance Investigator: Iona Novak
Co-Investigators: Michelle Jackman (John Hunter Children’s Hospital), Natasha Lannin (Alfred Health)

This study will determine if wearing a functional splint in addition to motor training (using the CO-OP approach) improves arm and hand movement and use in children with neurological conditions. There are some therapists who believe that a functional splint will improve movement and use as soon as the child begins to wear the splint in everyday activities,.Other therapists believe it takes longer to train the child to use the arm and hand differently. Because we do not know whether either of these is correct, this study will assess the immediate effects of upper limb functional splints on hand function, and assess the effects either in combination with motor training, or only motor training and no splint. Recruitment continues for this project in 2015.


Cognition and bimanual upper limb performance in children with unilateral cerebral palsy

Cerebral Palsy Alliance Investigators: Margaret Wallen, Iona Novak
Co-Investigators: Brian Hoare (Monash Children’s Hospital), Ali Crichton (Monash Children’s Hospital)

Associate investigators: Anna Makary (Monash Children’s Hospital), Michael Ditchfield (Monash Children’s Hospital), Adrienne Harvey (Royal Children’s Hospital), Charuta Dagia (Royal Children’s Hospital), Shane Moyle (Women & Children’s Hospital), Catherine Elliot (Princess Margaret Hospital for Children), Belinda McLean (Princess Margaret Hospital for Children), Megan Thorley (Queensland Cerebral Palsy Health Service), Kirsti Kankkunen (Queensland Cerebral Palsy Health Service)

The performance of daily tasks requires the active and controlled movement of two hands and is also dependent on cognitive function. Disruptions in cognitive development are common in children with hemiplegic CP but the impact on the performance of daily tasks is not yet understood. It is important to identify and describe the specific cognitive deficits in children with hemiplegic cerebral palsy, to investigate the impact of these on upper limb motor performance and how this might affect independent functioning in everyday life. This multicentre study will describe the association between and among cognition and upper limb bimanual performance in children with hemiplegic CP, and to interpret these findings in the context of the type and severity of brain injury obtained from MRI. The results will help clinicians better understand contributors to individual variation in motor performance, specifically upper limb bimanual performance, and have implications for the theoretical understanding and clinical treatment of motor and cognitive impairment.


Exploring the effectiveness of Amazing Magic Clubs as bimanual therapy for children with hemiplegic cerebral palsy in Australia

Cerebral Palsy Alliance Investigator: Margaret Wallen
Co-Investigators: Ashleigh Hines (University of Sydney), Anita Bundy (University of Sydney), Deborah Black (University of Sydney)

This project evaluates the effectiveness of Amazing Magic Clubs as a novel bimanual therapy for children with hemiplegic cerebral palsy aged from 8 – 16 years. Children with hemiplegia find it difficult to complete everyday tasks that require the use of two hands. This is a research project where the outcomes of this intervention will be evaluated with regard to change in hand function, participation in everyday tasks, and levels of confidence and self-esteem. The program was developed by Breathe Arts Research and it has been brought to Australia by the Arts Health Institute.


Cerebral Palsy Check Up: providing the best service at the best time

Cerebral Palsy Alliance Investigators: Petra Karlsson, Iona Novak, Hayley Smithers-Sheedy

Funding: NHMRC Partnership Grant (ref 1055278)
Chief investigators: Christine Imms (Australian Catholic University), Iona Novak, Dinah Reddihough (Murdoch Children’s Research Institute), Kerr Graham (Murdoch Children’s Research Institute), Nora Shields (LaTrobe University)
Associate investigators: Petra Karlsson, Hayley Smithers-Sheedy, Angela Crettenden (Novita Children’s Services), Adrienne Harvey (Victorian Paediatric Rehabilitation Services), Elspeth Froude (St Giles Society), Sarah Foley (Kids Plus Foundation), Ashley Creighton (Yoralla Society), Melinda Randall (Murdoch Children’s Research Institute)

This project investigates whether the implementation of tailored multi-faceted strategies to promote evidence-based practice, including systematic outcome measurement by professionals, is effective in a representative sample of Australian children with cerebral palsy.


Centre for Research Excellence in Cerebral Palsy: CRE-CP

Cerebral Palsy Alliance Investigators: Iona Novak, Nadia Badawi

Funding: NHMRC Centre of Research Excellence (ref 1057997)
Chief Investigators: Dinah Reddihough (Murdoch Children’s Research Institute), Kerr Graham (Royal Children’s Hospital), Christine Imms (Australian Catholic University), Nadia Badawi, Elizabeth Waters (University of Melbourne), Eve Blair (Telethon Kids Institute), Rob Carter (Deakin University)
Associate investigators: Iona Novak

This Centre of Research Excellence aims to bring about a radical improvement in the treatment of children and adults with cerebral palsy.

Despite the severity and impact that CP has on health, well-being and function, assessment and management are suboptimal and not always evidence-based. Health issues such as hip displacement and scoliosis are often neglected, or present late, causing significantly increased morbidity. This program of research aims to improve the functional abilities of all young people with CP along with their social participation and quality of life. Emphasis will be placed on early detection of health issues and rigorous evaluation of management and treatment options.

The CRE-CP held its Inaugural Symposium “Cerebral Palsy: Pathways to Possibilities” in Melbourne and Perth (May 2015) as a joint initiative between the CRE-CP and the Australasian Academy of Cerebral Palsy and Developmental Medicine. More information is available from: www.cre-cp.org.au


iWHOTrial: A multi-centre randomised controlled trial of rigid wrist/hand orthoses for young children with cerebral palsy

Cerebral Palsy Alliance Investigator: Margaret Wallen
Co-Investigators: Christine Imms (Australian Catholic University), Brian Hoare (Monash Children’s Hospital), Sue Greaves (Royal Children’s Hospital), Melinda Randall (Australian Catholic University), Brooke Adair (Australian Catholic University), Elizabeth Bradshaw (Australian Catholic University), Catherine Elliott (Curtin University; WA Child Adolescent Health Service), Dinah Reddihough (Royal Children’s Hospital; University of Melbourne; MCRI), Rob Carter (Deakin University), Kate Lee (MCRI), Francesca Orsini (MCRI), Simon Garbellini (Australian Catholic University; Princess Margaret Hospital).

This multi site assessor-blinded randomized controlled trial is situated within the framework of the NHMRC funded Centre for Clinical Research Excellence in Cerebral Palsy (CRE-CP). The focus of this trial is on preventing disability resulting from cerebral palsy. The effects on range of motion of static wrist/hand orthoses worn for 3 years will be evaluated in young children (0 to 24 months) with, or at risk of, cerebral palsy. Other outcomes are activity performance, pain, ease of caregiving, participation, quality of life, muscle stiffness and muscle tone. This trial also includes an economic analysis.


Minimising impairment: multicentre randomised controlled trials of upper limb splinting for children with cerebral palsy

Cerebral Palsy Alliance Investigator: Margaret Wallen
Co-Investigators: Christine Imms (Australian Catholic University), Brian Hoare (Monash Children’s Hospital), Sue Greaves (Royal Children’s Hospital), Melinda Randall (Australian Catholic University), Brooke Adair (Australian Catholic University), Elizabeth Bradshaw (Australian Catholic University), Catherine Elliott (Curtin University; WA Child Adolescent Health Service), Dinah Reddihough (Royal Children’s Hospital; University of Melbourne; MCRI), Rob Carter (Deakin University), Kate Lee (MCRI), Francesca Orsini (MCRI), Simon Garbellini (Australian Catholic University; Princess Margaret Hospital).

This multi site assessor-blinded randomized controlled trial evaluates the effects of serially adjusted rigid wrist/hand orthoses in children 5 to 15 years with cerebral palsy with upper limb spasticity with or without contracture. Outcomes include range of motion, activity performance, pain, ease of caregiving, participation, quality of life, muscle stiffness and muscle tone. The relative cost and cost-effectiveness from a health sector perspective will be measured. This study is situated within the framework of the NHMRC funded Centre for Clinical Research Excellence in Cerebral Palsy (CRE-CP).


Children with disabilities and their ability to cope: frequency and severity of negative social events as a predictor of resilience

Cerebral Palsy Alliance Investigator: Iona Novak
Co-Investigators: Louisa Salmon (Southern Cross University), Gail Moloney (Southern Cross University), Lewis Bizo (University of Waikato), Iain Graham (Southern Cross University)

The Australian government believes that all children have the right to learn in a safe and supportive school environment that values diversity. However, it is not known if children with physical disabilities truly experience an environment free from bullying, harassment, discrimination and violence. This study aims to ascertain the extent to which children with physical disabilities experience bullying at school, whether children with more severe physical disabilities are less able to cope psychologically, and whether exposure to bullying is related to resilience to bullying. Recruitment for this project continues in 2015.


REACH: Randomised trial of Early Rehabilitation in Congenital Hemiplegia

Cerebral Palsy Alliance Investigators: Iona Novak, Nadia Badawi, Cathy Morgan, Margaret Wallen

Funding: NHMRC Project Grant (ref 1078877)
Chief Investigators: Roslyn Boyd (University of Queensland), Jenny Ziviani (Royal Children’s Hospital, Brisbane), Leanne Sakzewski (University of Queensland), Iona Novak, Nadia Badawi, Kerstin Pannek (University of Queensland), Catherine Elliot (Princess Margaret Hospital), Susan Greaves (Royal Children’s Hospital, Melbourne), Andrea Guzzetta (University of Pisa, Italy), Koa Whittingham (University of Queensland).

Associate investigators: Jane Valentine (University of Western Australia), Paul Colditz (University of Queensland), Robert Ware (University of Queensland), Stephen Rose (University of Queensland)

Infants with asymmetric brain lesions are at high risk of developing congenital hemiplegia (the most common form of cerebral palsy) which can lead to poor bimanual coordination and significant negative impacts on the performance of daily activities in home, school and community life.

Although constraint induced movement therapy (CIMT) has been shown to effectively improve upper limb function in school-aged children with cerebral palsy, no study has examined such effects in infants, potentially failing to capitalise on a critical period during neural development.

This study aims to determine the efficacy of modified CIMT compared to an equal dose of traditional bimanual (BIM) training in young infants with asymmetric brain lesions with respect to (i) the influence on early reaching and grasping development, and (ii) brain re(organisation).

As cerebral palsy is the fifth most costly health condition in Australia, early interventions that attenuate the brain injury and improve function and participation will not only increase the quality of life of children with cerebral palsy and their families, but also reduce the associated costs of care.


Emerging adults with cerebral palsy: the transition from adolescence to young adulthood

Cerebral Palsy Alliance Investigator: Iona Novak
Co-Investigators: Nicole Ison (University of Western Sydney), Anne Cusick (University of Western Sydney), Rosalind Bye (University of Western Sydney)

This research project investigates the experiences and goals of people with cerebral palsy aged 18-25 years as they experience the transition to adulthood.

It aims to enable young people with all types and levels of severity of cerebral palsy to tell their stories about what life is like and what is important to them. Unstructured interviews are being used to elicit narratives in a multitude of areas, for example friendships, relationships, work, education, community access, participation, and the meaning of adulthood. Results will offer service providers a greater understanding of the experiences of emerging adults with cerebral palsy and a basis from which to develop and implement services and supports that may be useful in assisting young people to meet their goals.


Development of an evidence-based casting protocol for children with cerebral palsy: a multicentre randomised controlled trial

Cerebral Palsy Alliance Investigator: Iona Novak
Co-Investigators: Natasha Lannin (University of Sydney), Anne Cusick (University of Western Sydney), Megan Thorley (Queensland Cerebral Palsy Health Service)

Therapists routinely use plaster casts on upper limbs of children with cerebral palsy to lengthen tight muscles with a view to reducing contracture. A series of casts are applied to increase range of movement. This practice has little research evidence to support it. This multi-centre randomised controlled trial aims to determine the impact of serial casting the elbow of children with cerebral palsy who have existing contractures at that joint. The study will provide evidence regarding casting effectiveness and will inform guidelines for clinical application.


Pain and sleep problems in young children with cerebral palsy

Cerebral Palsy Alliance Investigator: Petra Karlsson
Co-Investigators: Monique Hines (University of Sydney), Kathryn Nicholson Perry (University of Western Sydney)

People with cerebral palsy frequently experience significant levels of pain and sleep problems yet the rates of pain and sleep problems in young children with cerebral palsy is unknown.

In this study, we aim to investigate rates of pain and sleep problems and predictors of disordered sleep in children with cerebral palsy less than 5 years of age. We will also investigate associations between pain and sleep problems in young children with cerebral palsy and depression, anxiety and stress in their parents and caregivers.


Completed Projects

Assistive technology in the classroom for students with cerebral palsy: “The team approach, the number one key to making it successful”

Primary investigators: Petra Karlsson (Cerebral Palsy Alliance), Christine Johnston (University of Western Sydney), Katrina Barker (University of Western Sydney)

This is the first Australian study to investigate family-centred service provision of high-tech assistive technology for students with cerebral palsy. This mixed methods study, set in an ICF-CY framework, is designed to survey and interview all key stakeholders, and explore factors determining the students’ abilities to access the curriculum.

Family-centred service is not yet fully achieved. To access the curriculum, it is critical forstudents with cerebral palsy that they attend a school with clear assessment, equipment and funding guidelines, and have a classroom team around them to provide opportunities to exercise their right to a meaningful education.


Modified constraint-induced therapy for children with hemiplegic cerebral palsy: a randomized trial

Funding: Allergan Doctoral Research Grant, Cerebral Palsy Alliance Research Foundation
Primary investigators: Margaret Wallen (Cerebral Palsy Alliance), Jenny Ziviani (University of Queensland), Olivia Naylor (Princess Margaret Hospital), Ruth Evans (Children’s Hospital at Westmead), Iona Novak (Cerebral Palsy Alliance), Rob Herbert (George Institute for Global Health).

Constraint-induced movement therapy (CIMT) is a treatment approach for use with children with hemiplegic cerebral palsy which aims to increase spontaneous use of the affected upper limb and ability to use the upper limb to complete daily activities.

CIMT is based on two fundamental principles: constraint of the non-affected limb and massed practice of therapeutic tasks with the affected limb. This randomised trial compared CIMT with intensive occupational therapy in 50 children with hemiplegic cerebral palsy.

Each intervention was equally effective for improving children’s ability to complete daily activities using their upper limbs. The study provides useful information to families of children with cerebral palsy, clinicians and service providers to consider in making decisions about therapy options.

Wallen, M., Ziviani, J., Naylor, O., Evans, R., Novak, I., & Herbert, R. D. (2011). Modified constraint-induced therapy for children with hemiplegic cerebral palsy: A randomized trial. Developmental Medicine and Child Neurology, 53(12), 1091-1099.


Practitioners’ knowledge and beliefs about pain in cerebral palsy

Primary investigators: Kathryn Nicholson Perry (University of Western Sydney), Iona Novak (Cerebral Palsy Alliance), Patricia Crosato (University of Western Sydney)

Inaccurate knowledge and beliefs about pain in practitioners may impede access to effective pain treatment for people with cerebral palsy. This project investigated the pain assessment and management practices of practitioners working with people withcerebral palsy, and the impact of their knowledge and beliefs about cerebral palsy pain on these practices.

This study identified barriers to effective pain assessment and management for individuals with cerebral palsy and identified targets for interventions.


Effectiveness of providing communication skills training and evidence-based practice (EBP) training for challenging health professionals’ clinical decision making and outcomes of care

Primary investigators: Lanie Campbell (University of Notre Dame Australia), Iona Novak (Cerebral Palsy Alliance), Sarah McIntyre (Cerebral Palsy Alliance)

Despite evidence-based practice (EBP) being widely endorsed and embraced by allied health professionals, uptake of the approach has been slow and inconsistent. Good communication skills between health professionals and clients/patients are essential for the delivery of high quality care. This trial measured (a) the impact of EBP decision-making training and provision of an EBP library, and (b) measured the impact of communication skills workshop on practitioner-client interactions.

Campbell, L., Novak, I., McIntyre, S, Lord, S. (2013). “A KT intervention including the evidence alert system to improve clinician’s evidence-based practice behaviour: a cluster randomized controlled trial.” Implement Sci 8: 132.


Pain, its impact and pain treatment in individuals with cerebral palsy study

Primary investigators: Monique Hines (Cerebral Palsy Alliance), Kathryn Nicholson Perry (University of Western Sydney), Sarah McIntyre (Cerebral Palsy Alliance), Rio Yamaguchi (University of Western Sydney), Renee Grant (University of Western Sydney)

People with cerebral palsy frequently experience significant levels of pain, yet it is often overlooked. In this study, we investigated the unmet need for pain treatment, including the types of services and treatments being accessed by people with cerebral palsy to manage pain, and their perceptions of the effectiveness of these treatments. We also investigated associations between pain and pain anxiety with behaviour/emotional difficulties in children with cerebral palsy.


Evaluation of the CAL (Competency, Assessment and Local solutions) program, Fiji

Primary investigators: Julia Salmon (Cerebral Palsy Alliance), Sarah McIntyre (Cerebral Palsy Alliance), Nicole Ison (University of Western Sydney), Shona Goldsmith (Cerebral Palsy Alliance)

Approximately 12, 000 people with a disability live in the developing country of Fiji. Yet only 0.2% of those requiring services have access to them. The competency based training, assessment and consultancy, and local/community participation activities (CAL) programme is a 3 year programme that aims to address the needs of children with disabilities in Fiji. It supports immediate health solutions, skill development for community rehabilitation assistants (CRAs), health workers, parents and teachers, and culminating in sustainability.

This study evaluated the first 2 years of the CAL programme regarding efficiency, quality and effectiveness and made recommendations for ongoing sustainability and improved implementation. The CAL programme is producing positive outcomes. Recommendations include: continuing and extending he programme; increasing the number of CRAs trained; ongoing communication with stakeholders to raise awareness of the programme; inclusion of outcome measures to evaluate effectiveness; and a focus during the third year on future sustainability of the programme.


Evaluation of a year five disability awareness package – Just like you!

Primary investigators: Nicole Ison (University of Western Sydney), Sarah McIntyre (Cerebral Palsy Alliance), Sophie Rothery (Cerebral Palsy Alliance), Samantha Parsonage (The Cerebral Palsy Alliance), Hayley Smithers-Sheedy (Cerebral Palsy Alliance), Liz Foy (Cerebral Palsy Alliance), Shona Goldsmith (Cerebral Palsy Alliance)

Participation of people with disabilities is influenced by environmental and contextual factors. Disability awareness programmes aim to increase knowledge and acceptance of disability.

This study evaluated a disability awareness programme for students aged 9-11 in Australia. Pre-post questionnaires and focus groups were used to evaluate the programme. The intervention took a cognitive-behavioural approach including a person with a disability co-presenting.

Students (n = 147) participated in two sessions of discussions, written activities, demonstrations and disability simulation activities. Significant improvements in knowledge, attitudes and acceptance of disability were evident immediately following the intervention. Focus group analyses further demonstrated these findings. A brief disability awareness programme for children improved knowledge, attitudes and acceptance of disability in the short-term.

Further research is required to identify the potential impact of such programmes on inclusion and social participation of people with disabilities both inside and outside of the school setting.

Ison, N., McIntyre, S., Rothery, S., Smithers-Sheedy, H., Goldsmith, S., Parsonage, S., & Foy, L. (2010). ‘Just like you’: A disability awareness programme for children that enhanced knowledge, attitudes and acceptance: Pilot study findings. Developmental Neurorehabilitation, 13(5), 360–368.


International consensus statements for botulinum toxin

Primary investigators: Kerr Graham (Royal Children’s Hospital, Melbourne), Victor Fung (Westmead Hospital), John Olver (Epworth Rehabilitation), Barry Rawicki (Monash Medical Centre), Barby Singer (University of Western Australia), Iona Novak (Cerebral Palsy Alliance)

People with neurological disorders seek effective treatments for the management of their movement disorder, the reduction in pain and discomfort, and for increasing their participation in everyday life. We set out to investigate the role of Botulinum neurotoxin A (BoNT-A) in achieving these goals. We identified the need to develop International Consensus Statements for BoNT-A in the treatment of neurological conditions based on a literature review and audit of practice variations in Australia.

Novak, I., Graham, H.K. (2010). Foreword to the Botulinum Toxin Consensus Statement. European Journal of Neurology, 17(s2): iii-iv.
Esquenazi, A., Novak, I., Sheean, G., Singer, B.J., Ward, A.B. (2010). International consensus statement for the use of botulinum toxin treatment in adults and children with neurological impairments – introduction. European Journal of Neurology, 17(s2):1-8.

Love, S.C., Novak, I., Kentish, M., Desloovere, K., Heinen, F., Molenaers, G., O’Flaherty, S., Graham, H. K. (2010). Botulinum toxin assessment, intervention and after-care for lower limb spasticity in children with cerebral palsy: international consensus statement. European Journal of Neurology, 17(s2):9-37.
Fehlings, D., Novak, I., Berweck, S., Hoare, B., Stott, N.S., Russo, R.N. (2010). Botulinum toxin assessment, intervention and follow-up for paediatric upper limb hypertonicity: international consensus statement. European Journal of Neurology, 17(s2):38-56.

Novak, I., Campbell, L., Boyce, M., Fung, V.S.C. (2010). Botulinum toxin assessment, intervention and aftercare for cervical dystonia and other causes of hypertonia of the neck: international consensus statement. European Journal of Neurology, 17(s2):94-108.
Rawicki, B., Sheean, G., Fung, V.S.C., Goldsmith, S., Morgan, C., Novak, I. (2010). Botulinum toxin assessment, intervention and aftercare for paediatric and adult niche indications including pain: international consensus statement. European Journal of Neurology, 17(s2):122-134.

Rawicki, B., Sheean, G., Fung, V.S.C., Goldsmith, S., Morgan, C., Novak, I. (2010). Botulinum toxin assessment, intervention and aftercare for paediatric and adult niche indications including pain: international consensus statement. European Journal of Neurology, 17(s2):122-134.


Is there a causal relationship between commonly used severity classifications and the assistive equipment needs of children with cerebral palsy?

Primary investigators: Iona Novak (Cerebral Palsy Alliance), Cathy Morgan (Cerebral Palsy Alliance), Hayley Smithers-Sheedy (Cerebral Palsy Alliance)

Children with cerebral palsy routinely use assistive equipment to improve their independence. Specialist equipment is expensive and therefore not always available to the child when needed. This study determined whether the assistive equipment needs of children with cerebral palsy and the associated costs could be predicted.

Gross Motor Function Classification System (GMFCS) level and the presence of epilepsy predicted the prescription of assistive equipment. The more severely affected the gross motor function impairment, the more equipment that was required and the more the equipment cost. The equipment needs of children with cerebral palsy can be predicted for the duration of childhood. This information may be useful for families and for budget and service planning.

Novak, I., H. Smithers-Sheedy and C. Morgan (2012). “Predicting equipment needs of children with cerebral palsy using the Gross Motor Function Classification System: a cross-sectional study.” Disabil Rehabil Assist Technol 7(1): 30-36.


Effectiveness of occupational therapy home program intervention for children with cerebral palsy: a double blinded randomised controlled trial

Primary investigators: Iona Novak (Cerebral Palsy Alliance), Anne Cusick (University of Western Sydney), Natasha Lannin (University of Sydney)

The goal was to assess the effectiveness of an occupational therapy home program (OTHP), compared with no OTHP, with respect to function and parent satisfaction with child function, participation, goal attainment, and quality of upper limb skill in school-aged children with cerebral palsy. Eight weeks of OTHP produced statistically significant differences in function and parent satisfaction with function, compared with no OTHP.

Parents in the 4-week OTHP group did not discontinue use at 4 weeks, as instructed, and continued for 8 weeks; results demonstrated statistically significant differences compared with no OTHP. There was no difference in primary or secondary end point measures between intervention groups.

Pediatricians can advise families that OTHPs developed with a collaborative, evidence-based approach and implemented by parents at home were clinically effective if implemented 17.5 times per month for an average of 16.5 minutes per session.

Novak, I., Cusick, A., Lannin, N. (2009). Occupational therapy home programs for cerebral palsy: double-blind, randomized, controlled trial. Pediatrics, 124(4), e606-14


Psychometric properties of the Quality of Upper Extremity Skills Test (QUEST) for children with cerebral palsy

Primary investigators: Megan Thorley (Queensland Cerebral Palsy Health Service), Natasha Lannin (University of Sydney), Anne Cusick (University of Western Sydney), Iona Novak (Cerebral Palsy Alliance), Roslyn Boyd (University of Queensland)

The aim of the study was to investigate the construct validity and reliability of the Quality of Upper Extremity Skills Test (QUEST) in children with cerebral palsy .

Reporting QUEST results separately for domains and each limb is recommended. Posture items in the grasp domain had little relationship with total scores and it is recommended that they be removed from the test. The QUEST has proven reliability for children with cerebral palsy aged 18 months to 8 years. This study demonstrates strong reliability for children aged 2-12 years.

Thorley, M., N. Lannin, et al. (2012). “Construct validity of the Quality of Upper Extremity Skills Test for children with cerebral palsy.” Dev Med Child Neurol 54(11): 1037-1043.

Thorley, M., N. Lannin, et al. (2012). “Reliability of the quality of upper extremity skills test for children with cerebral palsy aged 2 to 12 years.” Phys Occup Ther Pediatr 32(1): 4-21.