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2024 IPBIS Conference Pre-Conference Sessions

The following Pre-Conferences will take place at the upcoming 2024 IPBIS Conference in Glasgow:

Contemporary Approaches to Family-Centred Care in Practice: Evidence-Based Initiatives to Advance the Care of Young People with Acquired Brain Injury and Their Families

Acquired brain injury (ABI) is associated with a range of acute and long-term impacts for young people and their families. The philosophy of family-centred care has been embraced by paediatric rehabilitation services around the world. At its essence, family-centred care incorporates collaborative family-provider partnerships, effective communication, responsiveness to family needs, priorities, and choices, and interprofessional teamwork. Ongoing challenges in delivering family-centred care for children with ABI are reported by paediatric rehabilitation services. This pre-conference workshop will introduce contemporary approaches to family-centred care, with a particular focus on key areas of significant research advances, including understanding and meeting the needs of the entire family, supporting child and family mental health, and fostering hope in families following ABI. Presenters will draw upon contemporary frameworks for applying family-centred care, such as systems-based and context-specific rehabilitation approaches, the Life Course Health Development model, the International Classification of Functioning (ICF), F-words in childhood disability, and modern approaches to collaborative goal setting and partnering with children and families. International perspectives from Australia, New Zealand, France, and Canada on the practicalities of applying research findings into clinical practice will be shared. The value of lived experience and importance of service improvements informed by family and child perspectives will be a central theme of the session. The presenters will share practical examples of how they have used a range of participatory methodologies to better understand family needs and experiences, as well as to co-design and evaluate interventions in partnership with families. This pre-conference workshop will be a highly interactive session involving reflective small group discussions, and a panel discussion on innovative approaches to family-centred care. The panel members will consider the active role of clinicians and services in implementing family-centred care approaches that address the complex needs of children and families. Participants will have opportunities to reflect on how their learnings can be applied within their own clinical practice settings. 

Evidence-based Pediatric Concussion Assessment and Treatment Enhanced by Community Outreach/Education

The goal of the workshop is to demonstrate the use of evidence-based tools and programs in the diagnosis and management of concussion, including community education programming to support more effective injury recognition and access to services. We review a package of assessment and recovery guiding measures for use by healthcare providers in their management of children and adolescents with concussions. Pediatric concussion recognition, diagnosis and management has advanced substantially over the past two decades. Dr. Gioia will present a set of evidence-based assessment/ diagnostic tools to: define and track symptoms (Acute Concussion Evaluation (ACE), developmentally based Post-Concussion Symptom Inventory (PCSI-2), and the Post-Concussion Executive Inventory (PCEI), definition and tracking of school-based issues (Concussion Learning Assessment and School Survey (CLASS-3), and treatment-oriented tools such as the PACE-Self Efficacy scale and Concussion Catastrophizing Scale. Psychometric evidence of reliability/ precision and validity, including reliable change metrics provide the healthcare practitioner (HCP) with key data to determine progress (or lack thereof) and specific areas to focus treatment efforts. The tools will be made available to workshop participants. Toward this end, Dr. Vaughan will review the current concussion treatment guidelines including evidence from the systematic reviews of the 2022 Amsterdam conference (rest vs no rest, physical activity, return to school, other treatment pearls). Specific recommendations for management in clinical practice will be provided based on this body of findings. The use of the ACE Care Plan will be demonstrated as a tool to communicate findings and treatment recommendations. Dr. Anderson will present the evidence-based multimodal treatment program developed by her team, for patients still symptomatic at 4 weeks post-injury. The treatment program, Concussion Essentials (CE), is an 8-week symptom-targeted, multidisciplinary intervention, with the primary outcome being symptom resolution. Treatment options are determined by a combination of patient symptom status and clinical team consensus and include 3 modules: i) psychoeducation (exercise sleep, headache management), ii) physiotherapy; and iii) psychological intervention. Evidence of its effectiveness will be presented. As context to these concussion management services, an educated consumer is ultimately better able to access and utilize these services to manage their injuries. Dr. Anderson will review recent surveys identifying the gaps in knowledge in the community. Drs. Anderson and McGill will further discuss efforts in community outreach and concussion education, featuring the use of smartphone apps and associated materials. These resources can better prepare the community to recognize and respond to an injury as well as assist with efficient clinical reporting. We will demonstrate the use and applicability of these tools with various scenarios and across various environments, including healthcare, recreation/community, school, and home settings.

An Interdisciplinary Approach to ABI Rehabilitation across the Care Continuum

Acquired brain injury (ABI) can result from traumatic or non-traumatic causes and can vary in severity of injury. Following injury, many children require more intensive inpatient and/or outpatient rehabilitation. This intervention often includes a variety of providers to support a child’s rehabilitation across medical, physical, cognitive, language, behavioral, and educational domains. This comprehensive rehabilitation often involves collaboration between providers. Additionally, interdisciplinary teams must adapt their assessments and intervention plans depending on the setting (inpatient rehabilitation, outpatient intensive rehabilitation, outpatient, or medical clinic) and the child’s stage of recovery from ABI. Our presenters will discuss a collaborative, interdisciplinary model to rehabilitation across the care continuum with a particular emphasis on medical, cognitive, physical therapy, and behavioral interventions. A physical medicine and rehabilitation physician will speak to medications to optimize therapies and overall recovery and considerations for additional medical assessments. A pediatric neuropsychologist will speak to serial cognitive assessment, individualized protocols, and cognitive rehabilitation interventions, with additional information provided on cognitive rehabilitation in an intensive outpatient rehabilitation setting. A behavioral psychologist will speak to behavioral sleep interventions, preference assessments, and environmental strategies for managing behavior. Additionally, presenters will discuss how provider roles may adapt in the context of a child’s stage of recovery while taking into account cultural, family, and individual factors. This will be illustrated through the care of an adolescent male with initial rupture and later subsequent re-rupture of right thalamic arteriovenous malformation (AVM) . Through this case illustration, we will provide education on AVM, as well as our model of care and how assessment and intervention may be adapted as the child emerged from a disorder of consciousness (DoC) while progressing from inpatient rehabilitation to intensive outpatient rehabilitation to multidisciplinary follow up clinic.

The Cognitive and Linguistic Scale: Use in Clinical Care and Multicenter Research

The importance of serial neurocognitive assessments to inform treatment planning during inpatient rehabilitation as well as end points in clinical trials is increasing, particularly within acquired brain injury patients. There is a need for reliable and valid assessments that can be used serially to manage these complex patients. The Cognitive and Linguistic Scale (CALS) is a brief, serial neurobehavioral assessment measure designed to assess recovery of cognitive and linguistic skills in children with acquired brain injury who warrant inpatient rehabilitation. The CALS is used by cognitive experts, including neuropsychologists and speech language pathologists, in numerous inpatient pediatric rehabilitation facilities in the United States and beyond. The CALS has been shown to be sensitive to tracking small but significant changes in cognitive functioning, which is particularly meaningful in the lower functioning patients and those in disorders of consciousness. This symposium will focus on reviewing the development and psychometric properties of the CALS, the growing literature describing the use of the CALS in clinical settings and multicenter research, and the translation of the CALS into Spanish, Dutch, and Hebrew from experts in the field.Dr. Slomine, one of the developers of the CALS, will provide an overview of the measure. She will describe CALS content, administration, scoring, and typical use of the measure in clinical care. In addition, she will review the core psychometric properties of the instrument. Dr. Blackwell will describe how the CALS was used in a large multicenter study by the Pediatric Brain Injury Consortium. She will provide an overview of the study results, including how the CALS was used to track recovery over inpatient admission in patients, as well as a discussion on how the measure can be used in both single and multicenter studies and what was learned from this methodology. Dr. Svingos will present on the Rasch properties of the CALS and how the tool may be optimized for modeling outcome trajectory parameters during inpatient rehabilitation, such as recovery rate. She will also share data on the Minimal Clinically Important Difference for the CALS which can be used to inform clinical trial design and interpretation. Ms. Freer will review the methodology used to translate the CALS into Spanish, Dutch, and Hebrew. She will review the benefits of working together to create these unique versions of the CALS. She will also present some preliminary data describing the reliability and validity of the Spanish CALS.Dr. Kemps will present on the utility of the Dutch CALS for standardized monitoring of cognition in pediatric brain tumor patients before and after tumor resection. She will present preliminary data on reliability as well as on sensitivity of CALS scores for post-surgery changes in functioning and for the impact of neurological complications.

Learning From the Development of Interdisciplinary Community Services for Children and Young People (CYP) with Acquired Brain Injury (ABI) in Australia, the Netherlands, Norway and the UK.

For young people, habilitation after brain injury is lifelong.  How can services best support this? What are the key ingredients?  How does funding and commissioning impact on provision? How are young people seeing these services and where do they think they need to be improved? We offer an international, interdisciplinary symposium that reviews the development of models and pathways that are available in the Netherlands, Australia, Norway and the UK with both professional and lived experience experts’ opinion together with a panel of young people who have had an injury.From the UK, Dr Katie Byard (Co-founder and Clinical Director Recolo UK Ltd) will provide a contextual perspective on community neuro-rehabilitation provision for young people with brain injury.  Dr Gemma Costello (Clinical Lead for the Cambridge Centre of Paediatric Neuropsychological Rehabilitation) will present on the pathways developed for children and young people in the East of England and Susie Nolan (Interim Head of Rehabilitation Therapy at The Children’s Trust) will share their national approach to community provision. From the Netherlands, Dr Menno van der Holst (Senior Researcher in Paediatric Rehabilitation) will present on the collaboration across rehabilitation centres in the Netherlands in the search for consistency and improvement of care for paediatric ABI. From Norway, Dr Nina Rohrer-Baumgartner (Clinical Neuropsychologist and Researcher at Sunnaas Rehabilitation Hospital) will present on the pathways developed for children and young people in the South Eastern Health Region of Norway and experiences from the Child in Context Intervention (CICI) Study that the CICI team is aiming to implement into existing services.  From Australia, A/Prof Sarah Knight (Clinical Neuropsychologist and Senior Lecturer) will present on using an integrated knowledge translation approach that actively involved young people with lived experience of paediatric ABI, families, and rehabilitation clinicians, to co-design targeted interventions aimed at improving evidence-informed rehabilitation at the Victorian Paediatric Rehabilitation Service, Royal Children’s Hospital, Melbourne. Between us, we are a Physiotherapist, Occupational Therapist, Educational psychologist, Clinical Neuropsychologist, and Clinical Psychologists delivering community neurorehabilitation.  We share what our services have learned to date and how they have evolved in the presence of young people who have had a brain injury.  This panel of experts will then provide us with feedback and their lived experiences.  We will then invite questions and encourage sharing views on community neurorehabilitation from those attending the symposium.  This symposium will provide attendees with a review of what is in place in these four different countries.  It honours the important shift to the co-production of service provision with experts by experience and provides a platform for discussion and learning from one another’s experiences and possibilities.

Please refer back in the coming months as more details about the pre-conferences will be posted.