Breakfast Sessions

Presenters: Sarah Bekteshi, Elegast Monbaliu, Petra Karlsson

Summary: Cerebral palsy (CP) is a lifelong neurodevelopmental condition characterized by activity limitations that pose significant challenges in day-to-day functioning. One-third of all people with CP are non-ambulant and have limited ability to use their hands or produce intelligible speech, resulting in lower levels of activities and societal participation. To support people with CP, a range of assistive technologies can be used to address limitations in mobility, communication, or access to computers. Due to limitations in hand control and coordination, individuals with severe CP are unable to use conventional interfaces, such as a joystick or touchscreen, to access widely available powered wheelchairs and computers.

New technologies, such as powered wheelchairs with head-foot steering systems and eye-tracking technology, offer alternative access methods supported by clinical practice as optimal options for greater daily independence. However, due to a lack of evidence-based recommendations, introducing, implementing, assessing, and structuring training programs for technology acceptance and efficiency of use pose significant challenges.

To address the imperative for research, the presenters led numerous observational and experimental studies on the topic of powered wheelchairs with head-foot steering systems and eye-tracking technology in children with severe CP, generating valuable clinical insights and guidelines to facilitate a successful implementation of these innovative technologies in the lives of individuals who stand to benefit from them.

Presenters: Sarah McIntyre, Shona Goldsmith, Stevan Day, Robert Reynolds

Summary: The causal pathways to cerebral palsy (CP) are multifactorial and complex. Understanding causal pathways is a priority for families, essential to identify new prevention opportunities, and to offer early detection and intervention for infants at risk of CP. A unified representation of causal pathways to CP is needed to facilitate scientific discovery, communication between disciplines, and prioritisation of research worldwide.

A Directed Acyclic Graph (DAG) is a visual illustration of the causal relationships between events. DAGs can facilitate communication between clinicians, researchers, and people with lived experience. Our international team (including epidemiology, biostatistics, paediatric neurology and neonatology and lived experience expertise) has developed a preliminary CP-DAG based on existing literature, feedback from people with lived experience, and three recent workshops (AACPDM 2023, SCPE 2024 and ACPR 2024). The preliminary CP-DAG consists of 76 nodes and 176 links, that span the pre-conceptional period (including social determinants of health), the prenatal, perinatal and post-neonatal period. We will present the first analysis of centrality for all nodes in the network, as a face validity check on the network itself.

Our vision is for a mature CP-DAG to be developed. We propose that experts from diverse backgrounds and across low to high income countries will contribute to further development of the CP-DAG. In addition, more detailed DAGs based on major causal pathways will be developed to supplement the CP-DAG and drive research. This will be an iterative process, and the CP-DAG will ultimately be housed on an online platform and updated as the field evolves.

Presenters: Jahat Israt, Maria de las Mercedes Ruiz Brunner, Samuel Kofi, Pearl Exornam Selormey, Mohammad Muhit, Nadia Badawi, Gulam Khandaker

Summary: Children with CP are vulnerable to malnutrition. In LMICs two in three children with CP suffer from at least one form of undernutrition and malnutrition is the leading cause of premature death in children with CP in LMICs. Meeting their nutritional needs could be challenging as the associated motor severity and comorbidities often affect their feeding, dietary intake, and disease management and they require comprehensive health care and services. The situation becomes more complex in low- resource settings where healthcare service access and utilization are limited.

Presenters: Craig Munns, Meredith Wynter, Kate Willoughby, Simon Paget

Summary: During this seminar participants will explore the causes, incidence, clinical features, natural history and management of musculoskeletal complications in children with cerebral palsy (CP), including hip displacement, scoliosis and skeletal fragility. These secondary musculoskeletal problems can develop in cerebral palsy due to an interplay between the positive (hypertonia, spasticity, contracture) and negative (weakness, hypotonia, decreased coordination) features of the upper motor neurone syndrome. Limits remain in our understanding of the potential, complex relationships between these musculoskeletal complications, and there are gaps in knowledge of the early biomarkers of decreased bone density. Late detection of scoliosis remains a challenge, and assessment of bone health is often not considered until a child has sustained a pathological fracture. These knowledge gaps limit the development of guidelines for detection and monitoring, and timely, effective interventions. The Australian Cerebral Palsy Musculoskeletal Health Network (AusCP-MSK) is a multi-centre study aiming to address these knowledge gaps by exploring early biomarkers of skeletal fragility and the relationships between hip displacement, scoliosis, joint contracture and pathologic fractures in children with CP functioning at GMFCS levels III – V. Additionally, the study aims to generate evidence to inform the development of clinical guidelines for the surveillance of scoliosis and skeletal fragility in children with CP that can be used to guide local implementation.

Presenters: Prue Morgan, Nicole Kozelj, Christine Imms, Gaela Kilgour

Summary: Our Centre of Research Excellence, CP-ACHIEVE, is a collaboration between researchers, clinicians, and lived experience experts. Based on key life areas identified by young adults with CP, we developed a series of online surveys to explore demographic, clinical and participation characteristics of young people with CP, aged 10-30 years, in Australia. Participation in life situations – including healthcare – requires attendance and involvement. Young adults with CP often have complex health needs, and more interactions with healthcare systems and professionals than peers without disabilities. This seminar will interactively explore findings from the survey’s ‘Participation in Healthcare Module’, and a recent scoping review, from perspectives of young adults with lived experience of CP and healthcare providers.

Sixty young people (mean age 22 years, GMFCS Levels I-V) completed the Healthcare Module. Condition prevalence data demonstrated a high percentage of health concerns (e.g. asthma 20%, anxiety 53%). Most respondents visited their GP in the last year, and felt ‘somewhat involved’ in the interaction, with the environment ‘sometimes making it harder to participate’. Although ~30% of participants were ‘satisfied’ with amount and quality of their mental healthcare, an equal proportion were ‘neutral’. Thirty percent of participants were ‘neutral’ on acceptability of arrangements needed to participate in and manage their mental health. Half of respondents did not wish to change anything about their healthcare.

Findings suggest young people with CP are more likely to report being in poor health compared with peers without disability, and report limited experiences with healthcare services. Results indicated that young adults with CP may not be fully satisfied with services provided, nor their involvement in their healthcare.

Presenters: Kristine Stadskleiv, Amelia Mitchell, Ann Alriksson-Schmidt, Petra Karlsson

Summary: Cerebral palsy (CP) has been defined as a motor disability. However, cognitive and/or social skills challenges are often present. Neuropsychological assessment is invaluable in identifying such impairments and targeted intervention needs. These assessments typically require speech, writing/drawing, fine motor manipulation, and/or speeded responses; therefore, it is not surprising that less than one-third of children with CP undergo neuropsychological assessment. The limited accessibility of tests frequently results in underestimates of cognitive ability. These inaccuracies can adversely affect educational/vocational/life-course planning and opportunities. Children with CP who cannot speak, often use switch or eye-gaze technologies to enable them to communicate. These communication technologies can also be used to assess cognition, but there is a lack of awareness and training to implement them in clinical practice.

In this breakfast seminar, researchers and clinicians from Australia and Scandinavia will present current evidence on the importance of neuropsychological assessment in individuals with CP, as well as the challenges of implementing them in clinical practice. Drawing on our professional knowledge and experience, we will discuss known practices and lessons learned, as well as review ongoing studies and initiatives.

Presenters: Noula Gibson, Monica Cooper, Katherine Langdon, Lisa Moshovis

Summary: For children with cerebral palsy and medical complexity the benefits of an effective service approach that brings together all the child and family factors approach are multifactorial; the child benefits from care, that is, safe, individualized and delivered by experts as a coordinated service; clinicians benefit by having increased collegial support and the service agencies benefit as the improvements in outcomes builds positive reputation for the units and organizations. An important aspect of effective services for children with complex medical needs is the use of evidence to inform current clinical practice, and an identified medical clinical lead, as well as involvement of team members involved in the patient's care. We will use the consensus statement for the prevention and management of respiratory illness in children with cerebral palsy as an exemplar to demonstrate our experience of how multidisciplinary, and inter-agency teams working collaboratively can apply and deliver high quality evidenced based, patient-centered care for improved outcomes. We will include our experiences of children transitioning out of a funded research model of service to highlight the both the positive and tricky navigations of implementing best practice into routine care where implementation lags behind research.

Presenters: Katarina Ostojic, Mackenzie Woodbury, Laurel Mimmo, Meredith Smith.

Summary: There is growing acknowledgment of the importance of codesign research in health- that is involving health end-users in the planning, implementation, and evaluation of research. Meaningful engagement in codesign research ensures that the research aim, question, and output meet the priorities of its end-users and implementation and delivery is accepted by individuals receiving services, their families, and service providers. There is large variability in the codesign approaches and activities used in the research, and the intensity of involvement.

This seminar will provide overarching evidence to and practical guidance for successful codesign research in health including principles, tools, and tips from the perspectives of people with lived experience of disability, clinicians, and researchers.

The presenters will share insights on specific Breakfasts of codesign research approaches on various topics (social prescribing for people with cerebral palsy (CP); patient experience measures for people with intellectual disability; pain assessment tools for people with CP) to help the audience understand how different codesign research approaches can be applied to suit a specific research aim.