Abstracts of the Queensland Paediatric Rehabilitation Conference 6th - 8th March 2019
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Wednesday 6th March, 2019 This workshop for parents and families aims to offer information and develop understanding about parental empowerment in systemic interactions as well as providing a Preconference Workshops supportive peer experience. Spotlight on Concussion Rehabilitation AusACPDM practice update – Holistic classification in cerebral palsy A/Prof Karen Barlow, Prof Keith Yeates Summary of Content: Pam Thomason, Dr Leanne Sakzewski, Katy Caynes, • What happens after the hit: an overview of concussion Debbie Burmester, Dr Kelly Weir, Dr Kristie Bell and post-concussion syndrome in children Summary of Content: • Knowledge itself is power: Getting the right information • GMFCS update: When a picture paints a thousand to families after a concussion words • The development of Paediatric Head Injury Follow-up • MACS update: Clinical utility and stability Clinical Pathway in Queensland • The Functional Communication Classification System • The role of the rehabilitation nurse after a concussion (FCCS): Development and applications • Sensorimotor and physiological integration following a • Correlation between the Eating and Drinking Ability concussion Classification System (EDACS) and standardised • Neuropsychology’s role in the management of assessment of oropharyngeal dysphagia in children with concussion cerebral palsy • Monitoring and Treatment options for Persistent Post- • Screening for feeding difficulties and undernutrition in Concussion Syndrome cerebral palsy • Panel discussion Second AROC paediatric rehabilitation quality Practical workshop on the Hammersmith Infant form/benchmarking workshops for specialist facilities Neurological Assessment Frances Simmonds, Jacquelin Capell Rachel Thomas, Carly Dickinson The Hammersmith Infant Neurological Examination (HINE) is a simple, quantifiable neurological examination validated for infants between 2 and 24 months of age. In conjunction with other assessment tools, it has been shown to have predictive value in identifying children ‘at high risk’ of cerebral palsy. By the end of the four-hour workshop, participants will be provided with resources and have a solid understanding of the HINE including: overview of the tool; item by item administration and scoring; evidence base including scoring cut-points and their predictive validity; interpretation of results. There will be two practical demonstrations where participants will score the HINE, followed by group questions and discussion. Champion your Child: How to be the voice your child needs in a complex system Fiona Russo- (University of Southern Queensland) Objectives: The Australian National Disability Insurance Scheme (NDIS) represents a significant change in the delivery of funded supports to Australians living with disability. Previous block-funding arrangements saw many people waiting on registers of unmet need. Individual funding allows for greater choice and control for participants, but it also shifts the responsibility for support coordination and access from ‘the system’ to families themselves. The parents of newly diagnosed children are often newcomers to the world of typical parenting and have little or no experience of disability. Managing multi-system interactions – NDIS, Health, Education, Social Services and others – will become a common feature of their lives as they seek and secure the right treatments, services, and equipment to support their child/ren. This research explored the way parents develop the advocacy skills to champion their child/ren throughout their lives. 2
Thursday 7th March, 2019 wrong door’ approach, facilitation of peer support, consistency of case managers, and the provision of timely and jargon-free information tailored to the needs of the Stream 1: 10:30am – 12:55pm families. Design: Mixed Methods – Qualitative / Action research S1-1 Conclusion: Families entering the NDIS – or indeed the Parent Empowerment and the NDIS disability landscape more generally – require the support of Fiona Russo (University of Southern Queensland) peers and consistent service providers. Under the NDIS Background: The Australian National Disability Insurance model, new families are less likely to have established Scheme (NDIS) represents a significant change in the relationships with early intervention support providers since delivery of funded supports to Australians living with the vast majority of these services are now accessible only disability. Previous block-funding arrangements saw many via the NDIS itself. The early childhood early intervention people waiting on registers of unmet need. Individual (ECEI) entry pathway for NDIS participants under 7 years old funding allows for greater choice and control for acknowledges this gap and makes some effort to address it participants, but it also shifts the responsibility for support but does not address the issues of social isolation and the coordination and access from ‘the system’ to families need for peer support links. Health – as a first responder to themselves. disability – is uniquely positioned to support families in this The parents of newly diagnosed children are often space. newcomers to the world of typical parenting and have little or no experience of disability. Managing multi-system S1-2 interactions – NDIS, Health, Education, Social Services and New Beginnings: Transition to the NDIS for children and others – will become a common feature of their lives as they young people with a newly acquired disability seek and secure the right treatments, services, and Kirsten Bula (The Sydney Children’s Hospitals Network) equipment to support their child/children. This research Background: For children and young people with a newly explored the way parents develop the advocacy skills to acquired disability, and their families and carers, navigating champion their child/children throughout their lives. the disability services environment and the transition to self- Objectives: Specifically, this project considered the directed funding under the NDIS represents a significant development of the advocacy skillset and mindset, barriers change. to success, advocacy supports, the role of family-centred Evidence indicates that variability in confidence and capacity care models, and initial NDIS engagement through a series of can have an impact on the alignment of NDIS plans with individual interviews with parents and focus groups with individual needs, and on access to/engagement with both service providers. The second phase of the study involved formal and informal supports1. the design and delivery of a series of workshops for parents Objectives: The vision of this NSW Health Information, that aimed to offer information and develop understanding Linkages and Capacity (ILC) Project is to: about parental empowerment in systemic interactions as Build the capacity of clients with newly acquired Spinal Cord well as providing a supportive peer experience. Injury (SCI) or Acquired Brain Injury (ABI), their families and Methods: Participants were recruited with the assistance of carers across NSW, to engage with the NDIS and the broader the Early Childhood Development Program (Ed Qld), Carers disability and mainstream service environment. Qld, Children’s Health Queensland (Paed Rehab and Child The target audience includes current, past and future Development Services), Hummingbird House, and social paediatric clients of NSW Health services. The format and media (Facebook peer support groups). Participants self- content of project deliverables will take into account the identified as primary parent-carers for children with individual and diverse needs of children and young people, disability. Ten (10) parents participated in in-depth, semi- their families and carers. structured, narrative individual interviews. Two 5-member Design: Qualitative Project focus groups were held with service provider Methods: Project deliverables will be specifically tailored to representatives including Education Qld, CHQ, Carers Qld, the needs of people with newly acquired disability, their Catholic Education Qld, Allied Health (private provider), Child families and carers, and informed by deep insight into the and Youth Mental Health Service, Qld Maternal Health local context, stakeholder experiences of the NDIS to date, Service, and Goodstart Kindy Program. Both interviews and and the availability of services (formal and informal focus groups gathered data on advocacy experience, supports). support, development, and activities and included discussion Patient experience interviews are being conducted with an of barriers and factors for success. aim to gain a deep insight into the patient/family/carer and A further forty (40) parents participated in a capacity staff experiences of the NDIS to date. Interviews will building program held over four weeks in mid-2018. These continue until data saturation has been achieved. Consistent respondents completed pre- and post-intervention surveys - themes will be extracted to guide the project deliverables. Beach Institute Family Quality of Life (FQoL) (Summers Results: This project proposes to deliver individual capacity- 2006), Paediatric Inventory for Parents (PIP) (Streisand, building sessions, as well as an education resource kit for Braniecki et al. 2001), and the Parental Empowerment and clients with newly acquired disability, their families and Efficacy Measure (PEEM) (Freiberg, Homel et al. 2014) – as carers. These will be rolled out in October 2018 and well as a short structured interview post-intervention. outcomes will be evaluated via questionnaires and Results: Findings highlight the importance of existing family qualitative interviews. relationships with early intervention providers, the ‘no 3
Conclusion: It is anticipated that the project deliverables will S1-4 assist clients, their families and carers to work effectively A 5-½ year retrospective study of individuals with mild to with NDIA representatives and service providers to moderate traumatic brain injury: consecutive presentations (a) develop and implement NDIS plans which are suited to to a tertiary hospital paediatric rehabilitation outpatient their needs, and clinic. (b) establish links with other informal and community-based R. Zarrinkalam (WCHN), R. Russo (WCHN), J. Rice (Flinders supports. University School of Medicine; WCHN) The project deliverables will be available on an ongoing basis Background: Traumatic brain injury (TBI) is common, with to ensure sustainable benefits for future clients of NSW mild TBI accounting for at least 90% of them. TBI can result Health services. Future directions will be outlined in the in lifelong physical, cognitive, behavioural and emotional project summary report. consequences. Studies indicate sequelae in 5-15% of cases with mild TBI. Accurate classification of severity, careful S1-3 monitoring and appropriate and timely management of Management of symptomatic mild traumatic head injury children and youth with mild to moderate TBI is warranted (Concussion). to ensure maximal recovery. Kathryn Asher (Rehab2Kids), Naomi Brookes Objectives: The primary aim was to audit the (Rehab2Kids), Dr Anna Ward (Rehab2Kids), Glenda documentation of brain injury severity and provide a Mullen (Emergency Department) description of cause, services utilised, investigations and Background: Research indicates that concussion has the interventions that they received. potential for long term consequences in some children. Design: Retrospective study Early identification, thorough assessment and appropriate Methods: 128 patients, 2-18 years of age (mean [SD] 13 follow-up are crucial in preventing persistent symptoms. years 1 month [4 years 2 months]), who presented to the It was identified by our team that some post concussive Rehabilitation outpatient clinic over a 5 ½ year period children were re-presenting to the Emergency Department (January 2012 to July 2017) with a diagnosis of mild to with persistent symptoms and that the Brain Injury moderate TBI were identified and their case notes reviewed. Rehabilitation Program (BIRP) was receiving a number of late Brain injuries as a result of infection, asphyxia/hypoxia, and referrals for children who continued to be symptomatic. non-accidental causes were excluded. The severity of TBI Further investigation suggested that management strategies was classified as mild or moderate based on Loss of and expertise in the busy Emergency Department (ED) Consciousness (LOC), Galscow Coma Scale (GCS) score, Post setting were quite variable and there were inconsistent Traumatic Amnesia (PTA) duration and results of cranial approaches to follow up post ED discharge. imaging. Objectives: Within 12 months 100% of patients (8-16 years) Results: The Male: Female ratio = 2.3:1. Fifty four percent presenting to the Emergency Department at Sydney had Mild and 46% moderate TBI. Almost a third had missing Children’s Hospital, within 24 hours of a symptomatic mild data for LOC or GCS, and 40% of the patients did not have head injury are correctly managed according to the current PTA status recorded. One hundred patients (78%) did not available evidence. have information on the number of missed days of school. Design: A joint Quality Project between the Brain Injury Most cases of moderate (84%) TBI did not have Rehabilitation Program and the Emergency Department was neuropsychometric assessment completed, while nearly a undertaken using Clinical Practice Improvement third those who underwent testing showed abnormal methodology. results. Half of the patients sustained mild/moderate TBI as Methods: Benchmarking with specialised paediatric a result of sporting injury and of these almost a third due to rehabilitation services across Australia and New Zealand was involvement with Australian Rules football (AFL). Nearly 1 in undertaken. Key stakeholders were engaged. Consumer 5 was the result of a motor vehicle accident. and staff feedback obtained. Problem identification was Conclusions: Diligent documentation of relevant medical facilitated by process mapping and a driver diagram utilised information is required in order to correctly classify the to determine interventions for ongoing PDSA cycles. severity of TBI as management and outcome will vary. It Quantitative and qualitative data collection was used. seems sensible to have a lower threshold for undertaking Interventions will include staff training, improvement in staff neuropsychometric assessment in all cases of moderate TBI and patient resources, access to updated clinical resources and those with mild TBI presenting with ongoing symptoms. and pathways and clarification of the referral process. With regards to safety educational campaigns, the priority Results: Results will address our identified primary drivers appears to be in motor vehicle/road safety and high-risk including change in staff knowledge and confidence, patient sports such as AFL. / family confidence and satisfaction, numbers of representations and referrals to a tertiary service. We will S1-5 address outcome and process measures along with The Friends Project: Optimizing social competency in youth balancing measures. with acquired brain injury and cerebral palsy. Conclusions: This paper addresses the strategies that were Rose Gilmore (QPRS; QCPRRC), Nicola Hilton (QPRS), Dr implemented to address knowledge, confidence and Sarah McIntyre (CP Alliance; The University of Sydney), Dr satisfaction in the delivery of consistent, evidence based Hayley Smithers-Sheedy (CP Alliance; The University of management of children with concussion. Sydney), Dr Tracey Williams (The Children’s Hospital at Westmead), Sarah Coombes (The Children’s Hospital at Westmead), Sarah Goodman (QCPRRC), Bianca Botha 4
(The Children’s Hospital at Westmead), Kirsten Quinn (CP Background: Self-awareness has been found to influence Alliance), Kate Hooke (CP Alliance), Isabelle Balde (CP mental health and functional outcomes following acquired Alliance), Honnie Gorry (QPRS), Dr Leanne Sakzewski brain injury (ABI) in adulthood, but has received little (QCPRRC) attention after paediatric ABI. Background: For adolescents with acquired brain injury Objectives: This study investigated the relationship between (ABI) and cerebral palsy (CP), making friends and maintaining self-awareness, mental health and adaptive functioning after social networks can be a major challenge influenced by co- paediatric ABI. morbidities such as Attention Deficit and Hyperactivity Design: Cross-sectional Disorder (ADHD), Autism Spectrum Disorder (ASD) and other Methods: 109 children with ABI (58% male) aged 8-16 years behavioural problems, poor social functioning, difficulties were consecutively recruited from a statewide paediatric with mobility, communication and limited social rehabilitation service and administered the Paediatric opportunities. Awareness Questionnaire (PAQ) and depression, anxiety and Objectives: This pilot study will test the efficacy of the 14 self-concept scales of the Beck Youth Inventories (BYI-II). week PEERS® (Program for the Education and Enrichment of Parents completed the PAQ and Adaptive Behaviour Relational Skills) social skill group program to improve social Assessment System (ABAS-III). Larger negative discrepancy competence and friendship skills of adolescents with a brain scores on the PAQ (parent minus child scores) were injury. interpreted as less accurate or lower self-awareness. Design: A waitlist randomised control trial study, inclusive Results: Children’s self-awareness did not vary according to of a 12 week follow-up conducted in Queensland and NSW. cause of ABI (i.e., trauma, stroke, infection, tumour). Higher Methods: Adolescents were recruited through the QCPRRC self-awareness was significantly related to older age at onset research database and QPRS and the CP Alliance, NSW CP (r = .37), lower self-concept (r = -.33) and better adaptive Register and Kids Rehab, Sydney Children’s Hospital functioning (r = .53). After controlling for age at onset, self- Network. Participants had a diagnosis of ABI or CP; were concept significantly moderated the relationship between aged 11-17, had a verbal IQ score >70 on the Wechsler self-awareness and adaptive functioning (p = .005). The Abbreviated Scale of Intelligence 2nd Edition (WASI-II) with positive relationship between self-awareness and adaptive parental reports of difficulties with social competency. functioning was most pronounced for those with higher self- Exclusion criteria included uncontrolled epilepsy, severe concept; children with a combination of high self-awareness visual or auditory impairment or non-verbal. Participants and high self-concept had the more favourable functional were randomised to receive PEERS® immediately, or waitlist outcomes. Low self-awareness was related to poorer usual care. The waitlist group proceed to receive PEERS® adaptive functioning irrespective of self-concept. after the 26 week retention time point. Conclusions: Children injured at a younger age may perceive Outcome measures include the Social Skills Improvement their functional abilities less accurately than those injured at System (SSIS) Rating Scales, Quality of Socialization an older age. Self-awareness is related to better functional Questionnaire (QSQ), Social Responsiveness Scale and the outcomes, particularly for children with a more positive self- Test of Adolescent Social Skills Knowledge (TASSK). Analyses concept. will follow standard principles for RCTs, using two group comparisons on all participants. The primary comparison H1 S1-7 immediately post the intervention at 14 weeks will be based Cognitive and Psychosocial Outcome of Paediatric Acute on the SSRS caregiver and child self-report. Disseminated Encephalomyelitis, Transverse Myelitis, and Results: 25 adolescents were recruited; 12 were allocated Gullian Barre Syndrome. to the “immediate” treatment group, (6 in QLD and 6 in Dr. Katherine Olsson (QPRS). Dr. Tania Malouf (QPRS), NSW) completed the intervention. 24 participants Dr. Kim McLennan (QPRS), Dr. Penny Ireland (QPRS), completed follow up assessments immediately following the Ceridwen Cromac (University of QLD) intervention in QLD (n= 6 “immediate” group; n= 7 “waitlist Background: Acute Demyelinating Encephalomyelitis group”) and NSW (n= 6 “immediate” group; n=5 “waitlist group”). (ADEM), Transverse Myelitis (TM), and Guillian Barre Results will be ready for presentation in March 2019 and will Syndrome (GBS) are sudden onset, inflammatory conditions, determine whether the PEERS® results in greater student characterised by rapid progression of symptoms including self and caregiver reported social skills, greater frequency of neurological symptoms, motor weakness, and loss of get-togethers with PEERS® and reduced level of conflict sensation. The conditions differ in regard to their area of during get-togethers. inflammation - central nervous system (ADEM), peripheral Conclusions: This research will guide clinical practice in nervous system (GBS), or a restricted transverse section of rehabilitation of social skills after brain injury and for adolescents with CP and inform researchers of any the spinal cord (TM). To date research and clinical modifications required to adapt the PEERS® for adolescents involvement have typically focussed on understanding and with a brain injury and in Australia. rehabilitating children's physical symptoms. While it is expected that such sudden and severe illnesses would also S1-6 be associated with complex psychological interactions, a Self-awareness following paediatric brain injury: review of the literature shows currently sparse research with Relationship to mental health and adaptive functioning regard to psychosocial outcomes. Among existing research, Owen Lloyd (QPRS), Tamara Ownsworth, Taylor West- no studies have explored the cognitive or psychosocial Taylor, Melanie Zimmer-Gembeck 5
outcome following GBS, or compared the three conditions current processes, identify key issues to be resolved and with each other. inform the design and implementation of solutions. Objectives: The objectives of the current study are • The diagnostic phase identified an additional 65 children a. Understand the cognitive, psychosocial, and academic admitted to JHCH in 2016 with a diagnostic profile indicating outcomes of children with ADEM, GBS, and TM compared to a potential need to access rehabilitation care (e.g. multiple normative samples, and trauma, complex orthopaedics, neurosurgery, complex b. Understand and compare outcome across conditions. illness or disease) who did not access rehabilitation care Design: The study is a cross-sectional research design. For during their admission or following discharge. the main quantitative analysis, the three conditions will • A range of solutions were subsequently developed serve as the independent variables while cognitive and including: refined referral criteria, centralised referral psychosocial outcomes will represent dependent outcome management systems, networking with JHCH staff, and measures. enhanced information for families. Methods: Participants are existing QPRS patients, aged 6-16 • Case study - 16 year old young man residing in rural NSW – years with ADEM, TM, or GBS. Participants are recruited motorbike vs truck - and the role of specialist rehabilitation through QPRS by a clinician not overseeing their treatment. care in supporting his recovery. An assessment protocol comprising cognitive (IQ, Memory, Implications and Recommendations for Current Clinical Executive Function, Academic attainment and Attention) and Practice: The Centre for Healthcare Redesign Methodology psychosocial measures (Pain, Mood, Behaviour, Parent provides a robust and systematic framework for project coping) was conducted with all participants. work, and involves strong involvement of staff and children, Statistical analyses will comprise analysis of descriptive data young people and families. within groups and analysis of variance and covariance within Future Direction/s: The project is continuing to work and between groups. Given the cross-sectional nature, the towards ensuring equity of access to rehabilitation care for specific comparisons chosen will be data led. all children and young people admitted to JHCH who would Results: Results will describe cognitive and psychosocial benefit from specialised rehabilitation care. This work can outcomes within and between the conditions, and explore potentially be expanded and applied within the any covariates impacting outcomes. development of the NSW Statewide Model of Care for It is expected results will offer greater understanding of Paediatric Rehabilitation. cognitive and psychosocial outcomes in these conditions, and guide future longitudinal research. Clinically, it is S1-9 anticipated results will inform assessment protocols and Animal Assisted Therapy: A therapist’s best friend highlight intervention needs. Catherine Norman, Jane Fong, Victoria Bruce (Women’s and Children’s Hospital, Adelaide) Background: Animal Assisted Therapy (AAT) is an evidence based, goal directed intervention delivered by a trained Stream 1: 1:55pm – 3:15pm handler & animal (dog) team who work under the direction of a health care professional. The Women’s and Children’s S1-8 Hospital, Paediatric Rehabilitation Department pursued Breaking Down Barriers: Improving Access to Paediatric development of an AAT from 2014. The program was Rehabilitation inspired by a patient story and supported by resounding Karen Height (HNEkidsRehab), Carolyn Matthews (John international evidence demonstrating AAT as an inclusive Hunter Children’s Hospital), Dr Heather Burnett therapy approach that is motivating, opportunistic and (HNEkidsRehab) crosses social, cognitive and participation barriers. Background: HNEkidsRehab is the tertiary level service The AAT program was developed through a consultative responsible for providing specialist paediatric rehabilitation process that involved risk mitigation, securing funding and care for the children and young people of the Hunter New building agreements to create a sustainable and seamless England Local Health District (HNELHD) in NSW. model of care. The AAT program was established within the • A project was undertaken to address a growing awareness Paediatric Rehabilitation team in 2016, and is now an that a number of acute inpatients at John Hunter Children’s embedded component of the inpatient and ambulatory Hospital (JHCH) were not consistently accessing paediatric services. Consumer feedback and staff surveys indicate the rehabilitation care following significant injury, illness or success of the program. complex disease process. Objectives: To describe the implementation of the Animal • Without early access to specialist rehabilitation care these Assisted Therapy (AAT) program at the Women’s and children can continue to experience pain, reduced mobility, Children’s Hospital, Paediatric Rehabilitation Department. limited attendance at school and restricted function which To summarise the program delivery model and report have long term implications physically, socially and therapist and family experiences within the AAT program. psychologically. To report strategies learnt to achieve interdisciplinary goals Objectives: To improve the transfer of care between JHCH through animal interactions. inpatient unit and HNEkidsRehab services for paediatric Summary of Content: In 2014, a submission to “Bright patients requiring specialist multidisciplinary rehabilitation Ideas” panel within WCH was successful to establish AAT. care by July 2018. Based on client need, and international evidence, the Summary of Content: Centre for Healthcare Redesign Paediatric Rehabilitation team proposed a structured mode Methodology was used to systematically assess data about of tailored, individual, animal assisted therapy, run under therapist prescription. The AAT program was developed 6
through a consultative process to create a sustainable and S1-11 seamless model of care. The program was designed to The Self-Concept Feedback Loop: Describing the impact of improve the physical, social, emotional and/or cognitive disability on the development of self-concept functioning of the patient, and enhance the rehabilitation Sau Kuan Cheong (Guide Dogs Queensland) experience. Background: Self-concept is an individual’s perception of AAT has provided a positive medium to work on goals. The him/herself. This perception presents in forms of nature of the therapy has provided social interaction and characteristics or attributes that an individual use to define acted as a distraction; it removes focus from a therapist themselves in various aspects of life. Recent literature instructing. Families report joy & a good memory to relate supports the view that self-concept is a multidimensional to. The WCH team hope to share their learnings of construct where self-concept is constructed from several developing and running this innovative program. core domains that are salient at different developmental life Implications and Recommendations for Current Clinical stages. The self-concept of typically developing children is Practice: Animal assisted therapy is an established and widely researched but research into the self-concept of embedded component of the Paediatric Rehabilitation children with specific disabilities are limited. Studies inpatient and ambulatory services. This program model can comparing the self-concept of children with disabilities to be recommended to other departments or hospital based typically developing children revealed inconclusive findings. services. Some studies reported similar self-concept across the groups Future Direction/s: The WCH Paediatric Rehabilitation team but other studies found that children with disabilities hope to achieve expansion of the AAT program to the wider reported lower self-concept compared to their typically hospital and other interested centres. Further systematic developing peers. However, very few literature explored the studies are required for collating data on the benefits of AAT mechanics of self-concept development; especially the role within this specialised area of paediatric rehabilitation of disability and its influence in the development of self- therapy practice. concept for children with disabilities. Objectives: This presentation aims to introduce the Self- S1-10 Concept Feedback Loop. This framework demonstrates the Eva’s Story: Adventures in CVI and Neuroplasticity process of self-concept development. In addition, the Self- Laura Garcia (Parent), Kerri Weaver (Eyes & Concept Feedback Loop includes components to explain the Independence) potential impact of disabilities to the development of self- Background: Laura and her family have needed to invite concept. specialists into the home ever since their daughter fell ill as a Methods: The Self-Concept Feedback Loop framework was 1 year old. She is almost 7 years now and her journey has first introduced in the development of a population-specific been such a positive one despite her initial challenges and self-concept instrument for preadolescent children with low vision. Her empowered parents have been such a strong cerebral palsy. It is believed that this framework can be supporter in rehabilitation and ensuring that Eva can achieve adapted to other disabilities. alongside her peers and family, with the realistic Results: Based on existing self-concept theories, it is known expectations of a fulfilling life ahead. that self-concept develops as a result of the interaction Objectives: between cognitive processes and social experiences. The • Introduction to the medical world Self-Concept Feedback Loop postulates that the individual first needs to be exposed to socialisation experiences or • Share the hospital experience opportunities. The individual’s behaviour during social • Share the importance of ongoing multidisciplinary experiences is influenced by their self-concept in relevant team support and follow-up domains. Then, the outcomes of these social experiences are • Enlighten audience – success stories analysed cognitively. The analysis involves evaluating the Summary of Content: Case Study – Acquired loss as a 1 year outcomes of social experiences against personal, social, and old perceived internal standards. Lastly, this analysis may result • Medical Definition – Cortical/Cerebral Vision in adjustments to existing standards or creation of new Impairment & Neuroplasticity personal standards; which in turn, shape the individual’s • Presentation – onset, rehabilitating, ongoing, now self-concept and future behaviours. It is postulated that • Diagnosis to Prognosis features of disability may directly and/or indirectly impact • Parents’ Perspective the individual’s behaviour during social experiences. • Specialist’ Perspective Furthermore, features of disability may also interfere with • Photographic evidence cognitive processes and interrupts the analysis of outcomes Implications and Recommendations for Current Clinical from social experiences. Hence, features of disabilities may Practice: influence the development and processes of self-concept. • Recommendations from a parent Conclusions: The Self-Concept Feedback Loop can be used • Recommendations from support staff as a framework to understand the development of self- Future Direction/s: concept which takes into account of the potential impact of • Provide updates, sharing successes disability. • Share experiences to support other families and specialists • Ongoing research – neuroplasticity and cerebral vision impairment 7
Stream 1: 3:45pm – 4:50pm BF underwent the following nerve transfer surgery on his left upper limb, with the goal of restoring hand function; brachialis to anterior interosseous nerve (finger flexion) and S1-12 supinator to posterior interosseous nerve (finger extension). Neurocognitive Program: An interdisciplinary allied health Results: At 2 years post-surgery, BF’s MMT improved from care coordination approach to rehab for children and 0/5 to 4/5 for left finger flexion and extension. BF’s COPM adolescents with brain injuries. reassessment at 2 years had significant change; performance Nicola Hilton, Rose Gilmore, Katherine Olsson, Megan and satisfaction scores improved 5.2 and 5.8 points, Jackson (QPRS) respectively. Learning Objectives: Conclusions: Current evidence is based on a small number of 1. Increased knowledge of long term effects of brain injury single case reports, BF’s results indicate that upper limb and how to support function in the community. nerve transfer should be considered as a treatment option 2. Understanding of QPRS Neurocognitive Program and how for appropriate paediatric cases of transverse myelitis. Time it works. frame for surgery requires further investigation in regards to 3. Develop confidence using strategies when working with allowing adequate chance for natural recovery versus children and adolescents with acquired brain injury in the preventing lower motor neuron death. community. Summary of Content: Provide up to date information about S2-2 the cognitive, communication, social and emotional long Upper limb rehabilitation for children with transverse term effects of acquired brain injury. Demonstrate a case myelitis management approach based at a tertiary hospital through Cate Biesot, Debra Khan (QPRS) clinical examples. Present methods of intervention including Background: Very limited research exists describing interpretation of assessments, use of telehealth and group rehabilitation for children with transverse myelitis. Research programs and use of strategies built in to daily routines at suggests that despite any initial neurological findings home and in the community. Design: Literature review and predicting poor recovery, inpatient rehabilitation brings systematic review significant functional improvement. Interactive Elements: Problem solving and small group It has been suggested that general therapeutic principles discussion through case studies. apply equally to patients with traumatic and non-traumatic Target Audience: Community and hospital therapists, case spinal cord injury. However transverse myelitis brings managers and insurers. unique challenges due to the great variation in the imaging Equipment Required: Audiovisual equipment required for level and clinical presentation, and the unpredictable nature videos. of the recovery. Objectives: Stream 2: 10:30am – 12:55pm - To define transverse myelitis – symptoms and causes - To draw on case examples to understand: o The varying clinical presentations of transverse S2-1 myelitis Upper Limb Nerve Transfer to Restore Hand Function Post o Medical interventions for acute transverse myelitis Transverse Myelitis - A Paediatric Case study o Upper limb interventions at different stages Sky Fosbrook (Sydney Children’s Hospital, Randwick) through recovery Background: Nerve transfer post SCI is a surgical procedure Summary of content: Transverse myelitis is an acute that involves cutting a functioning donor nerve (originating inflammation of the grey and white matter in one or more above the level of injury) and reconnecting it to a more spinal cord segments that causes loss of motor and sensory crucial but non-functioning nerve (below the level of injury). function below the level of injury. However imaging findings often do not correlate to clinical presentation and are not The following will outline the case of BF, an 11 year old boy reliable in predicting functional outcomes. who had upper limb nerve transfer surgery on the 8/2/16, As the state-wide rehabilitation service, QPRS have been after being diagnosed with longitudinally extensive involved in providing rehabilitation for a number of children transverse myelitis (LETM), C5 AIS D on the 10/8/15. Objectives: Our aim is to present the improvements BF had with transverse myelitis. Their age, clinical presentation and in his motor function and Canadian Occupational outcomes have varied, however a number of therapeutic Performance Measure (COPM) scores, at 2 years post- interventions have seemed to be effective in preventing and surgery. managing secondary complications and maximising function. Design: Single case study Implications and Recommendations for Current Clinical Methods: A COPM, conducted with BF, highlighted hand Practice: We will present the upper limb rehabilitation function as the major issue preventing his independence in completing activities of daily living and his ability to interventions trialled successfully with children in the participate in activities of leisure and education. BF had months and years following transverse myelitis. We will needle electromyography on the 21/12/15, which confirmed show how we have learned from our long-term patients to the results of the manual muscle test (MMT) of nil voluntary inform our care of more recent patients. motor units in his left C7/8 muscles and normal motor units/volitional movement of C5-C6 muscles. Future Direction/s: We would like to support the development of clinical guidelines for upper limb 8
rehabilitation in transverse myelitis, especially given the paediatric rehabilitation, there is less evidence available to long-term nature of medical treatment and recovery. guide practice due to lower population numbers. This presentation will explore how we are working towards S2-3 applying the adult literature to paediatric population to Use of electrical stimulation to prevent and manage ensure best practice. shoulder subluxation in children. Objectives: To review best practice for the management of Debra Khan (QPRS), Erin Lunn (QCH OT Dept; QPRS), Dana upper limb post stroke and the application into our daily Loader (UQ) practice in an acute paediatric tertiary hospital across the continuum of care. Background: Functional electrical stimulation can be used Summary of Content: This presentation aims to outline the by patients with spinal cord injury and brain injury to evidence available to guide assessment and intervention for improve muscle strength and assist in the recovery of upper limb impairments following stroke. It will apply the functional movement. QPRS is able to offer FES to children recommendations from the stroke guidelines to the post brain and spinal cord injury and with cerebral palsy. paediatric population, and to compare and contrast this to In the adult stroke literature there is evidence to support use our routine practice. of neuromuscular electrical stimulation around the affected We will explore how we have engaged therapists across shoulder muscles to prevent subluxation of the shoulder teams to apply available evidence to our everyday treatment while awaiting recovery of shoulder muscle activity. QPRS and how we are striving to embed and translate the has recently acquired small portable electrical stimulation evidence in practice. units which have the potential to be used at the bedside to Implications and Recommendations for Current Clinical specifically address weakness at the shoulder. Practice: This presentation will outline direct implications Objectives: To develop a guideline for the use of electrical for clinical occupational therapy practice in the management stimulation in children following acquired brain injury, of paediatric stroke including stroke, to prevent and/or manage shoulder Future Direction/s: Managing change in current practice subluxation. and ongoing processes will be required to ensure new The presentation demonstrates our process in reviewing the evidence is readily adopted into practice literature and benchmarking with other paediatric and adult based services to develop a guideline for the use of electrical S2-5 stimulation to prevent and/or manage shoulder subluxation What does hand function look like pre and post paediatric for children at LCCH. The guideline will be developed by the hemispherectomy? QPRS OTs and the Neurosciences OTs from the OT Department to ensure the best treatment across the Ellena Oakes (QCH Occupational Therapy Dept) continuity of care. Background: Hemispherectomy surgery for drug resistance Summary of Content: The guideline will provide therapists epilepsy is becoming more standard practice. In the past with: years we have seen a shift to this surgery being carried out • Indications to commence therapy of younger and younger children. At present we are • Muscles stimulated – clinical reasoning around predicting hand function post Hemispherectomy based on this? studies of adults and older children. With the recent advances in both assessments available pre surgery and • Guidelines around dose – how often, when used, motor learning treatments post it is essential to review the how long, settings on stimulator outcomes for these children. • Type of stimulation FES vs NMES Objectives: • Contraindications or precautions • Inform the audience of the current available • Other therapy recommendations used in research regarding hand function pre and post conjunction with stimulation e.g. exercises, use of Hemispherectomy in children 0-18 slings or supports • Provide pre and post case studies highlighting Implications and Recommendations for Current Clinical hand function and it implication for practice Practice: We demonstrate how we evaluate the evidence • Highlight potential areas for change in practice and and current practice to develop and implement guidelines ongoing research for therapists across LCCH service areas. Summary of Content: Future Direction/s: Measurement of the outcomes of the • Provide overview of systematic review looking at use of electrical stimulation to prevent and/or manage shoulder subluxation in the paediatric acquired brain injury hand function in children 0-18 years pre and post Hemispherectomy population. Opportunities for the development of guidelines for all treating therapists across the continuum of care • Utilise case studies to highlight the differences pre within LCCH. and post-surgery • Incorporate elements of a practice guideline including Ax and Rx S2-4 • Explore possibility of further research. Getting the upper hand in early stroke management Implications and Recommendations for Current Clinical Alison Waite, Erin Lunn (QPRS) Practice: • Provide evidence based recommendations Background: There has been extensive work in the adult regarding pre and post assessments rehabilitation world to establish Stroke Guidelines in an effort to ensure best practice and maximise outcomes. In 9
• Provide evidence based recommendation that is sufficient to evoke muscular contractions. When regarding post op treatment approaches applied during cycling, FES can provide sensory cues to help Results: Research pre and positively with LCCH cohort and the child contract a muscle at an exact point in the cycling other cohorts at national centres phase, with the aim to improve the timing and synergy of Including looking at left and right hemispherectomy muscle contractions. Alternatively, it can evoke stronger differences. muscle contractions to help the child achieve full cycling ? need to have fMRI revolutions. ? any other anatomical findings including corticospinal tract As part of an ongoing Randomised Controlled Trial of FES- projects as predictors indications for hand function cycling and adapted cycling for children with Cerebral Palsy outcomes. (GMFCS levels II-IV), participants have completed an 8-week training program of FES-cycling, functional exercises and S2-6 recreational cycling on adapted bikes. The training program Gait re-education in a young man with Dravet’s syndrome consists of two one-hour physiotherapy sessions per week, Erin Ralph, Dr Heather Burnett (HNEKidsRehab) including 30 minutes of FES-cycling each session. The Background: Dravet’s syndrome is an epileptic disorder that purpose of this presentation is to identify and discuss some has a known loss of walking function into adolescence. of the key facilitators and barriers to incorporating FES- Children tend to weaken, and develop crouch gait. cycling into physiotherapy programs for children with CP, This case study presents the history, progress and results of including children with cognitive impairments. gait re-education using serial casting to progressively re- Objectives: The aims of this presentation are to: educate walking ability. • Identify the facilitators and barriers to delivering Objectives: Can casting be used to effectively re-train gait in FES-cycling training to children with CP (GMFCS a young man who isn’t able to complete other, more levels II-IV), aged 6-18 years. conventional re-training methods? • To discuss strategies to help clinicians introduce Casting was completed over a period of several weeks, with and describe FES-cycling to children with CP, outcome measures evaluated throughout. This presentation including those with a cognitive impairment. will present the findings of the series, including the outcome • To provide recommendations to clinicians who are and the young man’s current function. currently using, or plan to use FES-cycling in their Summary of Content: As this was a single case study, the training programs. recruitment was opportunistic, in response to a problem Summary of Content: The presentation will focus solely on presented by a client during regular clinical review. the FES-cycling component of a larger Randomised Gait re-training is a known treatment method for people Controlled Trial. It will include: with gait disorders, but presents an additional challenge • A brief overview of the study design when they aren’t able to complete more traditional training • An overview of the FES-parameters used in our methods. This case study evaluates the effectiveness of training program serial casting to change the gait pattern of this young man. • Notes on describing the concept of FES to children, Implications and Recommendations for Current Clinical with quotes from participants Practice: The outcome of this case study may be able to be • Tips to help clinicians introduce FES to children used in the future for those people who are unable to with cognitive impairments complete more traditional gait retraining methods, or where • Examples of motivation strategies to help children traditional methods are unavailable. remain engaged over an 8-week FES cycling Recommendations on progression, type of casting, and program positioning may be able to be extrapolated from the • Perceived benefits and feedback from families and outcome of this case study. children who have participated in the FES-cycling Future Direction/s: Future use of this method may be program considered with the use in younger children and other • Things to consider when delivering an FES-cycling conditions where other methods of gait retraining have been program, including possible barriers unsuccessful or are unable to be completed. • Take home messages for clinicians who are interested in using FES-cycling as a training S2-7 modality. Pearls and Pitfalls of FES - Cycling for Children with Cerebral Implications and Recommendations for Current Clinical Palsy Practice: FES-cycling can provide an alternate mode of Ellen Armstrong (Griffith University; QPRS), Dr Sean exercise for children with CP who have reduced mobility Horan (Griffith University), Ms Megan Kentish (QPRS), when the program aligns with, and is appropriately tailored Professor Roslyn Boyd (QCPRRC, The University of to, the child’s goals. When delivering an FES-cycling Queensland), Dr Christopher Carty (Griffith University; program, it is important to establish a sound rationale for CHQ) using the device over an alternative mode of exercise and to Background: Functional Electrical Stimulation (FES) cycling consider: the time required to set-up the equipment and to provides a solution for children with Cerebral Palsy (CP) who establish training parameters; the age and level of cognition have limited ability to pedal a traditional bicycle due to of the child; the expectations of the family; the language and muscle weakness, spasticity and general deconditioning. FES methods that will be used to explain FES to the patient and; refers to electrical impulses that are delivered to the motivational strategies that are appropriate for the muscles via surface electrodes at an intensity and frequency individual child. 10
Future Direction/s: Information from this presentation can Rehab clinicians have varying experience with assessing be implemented immediately into clinical practice and is children for sport and recreational activity. Participation in intended to assist clinicians who are currently using, or sport and recreation activities is often identified as a goal for intend to use, FES cycling with patients with CP or similar paediatric patients conditions. The functional outcomes of the FES-cycling and A review of data in Rehab2Kids suggested a clinical need: recreational cycling program will be analysed and presented - 86% of children in subacute rehab identified goals on on conclusion of the larger RCT. It is hoped that this the COPM information will further assist clinicians to make informed A survey was developed to gain information from consumers decisions around incorporating FES-cycling into their therapy about their sport and recreation needs, and gaps in our programs for children with CP. service. Objectives: Within 6 months, children receiving services S2-8 through the Sydney Children Hospital (SCH) Randwick will Look at those Legs! FES Cycle as an adjunct to Rehab have Sport and Recreational goals addressed. Rebecca McDonald, Sky Fosbrooke, April Sutcliffe, Patients/families will have access to information on where Kath Asher, Catherine O’Sullivan (Rehab2Kids, SCH) they can access activities. Background: The functional electrical stimulation (FES) cycle Design: Quality project performed using the model for QI. is being used as an adjunct to physiotherapy and Quantitative and qualitative data collection was used along occupational therapy sessions in Rehab2Kids. We have had with process mapping, and driver diagrams to determine successful results with children using it regularly and when interventions. presenting with hemiplegia. Methods: Objectives: - The diagnostic and problem identification phase 1. To describe the current FES Cycle practice at SCH. adopted techniques of brainstorming, process 2. To present a single case study on the use of upper mapping, and driver diagram. (UL) and lower limb (LL) FES Cycle for a male (‘Tom’) - A survey was conducted of 212 families/children presenting with an extensive acquired brain injury. accessing SCH rehab services to ascertain Sport and Summary of Content: Discussion about current practice at Recreation needs, and gaps in services. SCH will include patient selection and suitability, set up of - Rehab2Kids staff were surveyed to determine current FES cycle and outcome measures collected. knowledge, and any links with organisations. Our case study will summarise Tom’s 206 day journey at Future Direction/s: SCH. We will discuss his rocky acute admission and his Main findings from consumer survey: primary issues, which included a dense left hemiparesis. - 50% stated sport and recreation goals were discussed Tom’s primary goals were identified using the COPM, and & 29.89% reported goals were not addressed included being independent in mobilising and completing Most important factors when accessing Sport/Recreation: self-care tasks and to be able to use his left UL in fine motor - child’s enjoyment 71%, activities that require two hands. Tom was introduced to the closeness to home 53% FES cycle after being referred to sub-acute rehabilitation. The biggest challenges: This was part of his very busy activity based therapy - child’s physical and cognitive difficulties 63.86% program. He used the cycle a total of 59 UL session and 35 LL - availability of suitable services 50% sessions. Tom worked very hard during his inpatient stay and - unaware of services 41% made significant functional gains and all his measures How we could improve our service: improved. Tom and his family reported high satisfaction with - dissemination of information using the FES cycle during his admission. - sport and Recreation services suitable to child’s needs Implications and Recommendations for Current Clinical - 73% of staff reported that they would like information Practice: We strongly advocate for the use of the FES cycle on Sport and Recreation organisations in early rehabilitation for both the upper and lower limb. We Conclusions: This project has identified gaps in our current have found it a useful adjunct to therapy. We are also processes, and lack of knowledge of staff and families about currently investigating the option of purchasing an “Xcite” suitable Sport and Recreation organisations multi-channel FES program which allows for more task Main areas of focus: specific, strengthening and gross motor training activities. - Improve staff knowledge through training from Future Direction/s: We have successfully applied for and external rehab organisations been granted funding to receive a Supine FES cycle. We hope - Improve access of families to Sport and Recreation that by being more proactive in the early phases of recovery, organisations through Sydney Children website we may help prevent some of the secondary complications page of long term CICU admissions. - Formalised process for Rehab therapists The team hopes to improve family’s ability to access suitable S2-9 organisations, and our ability to meet families and patient The Role of Sport and Recreation in Paediatric goals. Rehabilitation Kate Clark, Kathryn Asher, Catriona Murray Background: The participation of children with disabilities in sports and recreational activities promotes inclusion and optimised physical function. 11
Stream 2: 1:55pm – 3:15pm Stream 2: 3:45pm – 4:50pm S2-10 S2-11 Selective Dorsal Rhizotomy the Australian Experience: Evaluation of a virtual clinic model for cerebral palsy hip Selection, rehabilitation, orthopaedic management and surveillance outcomes. Dr Heather Burnett, Elisabeth Bowes, Erin Ralph, Ann Pam Thomason (Royal Children’s Hospital, Melbourne), Leonard (HNEkidsRehab) Olivia Lee (VPRS), Kim McLennan (QPRS), Meredith Background: The HNEkidsRehab Cerebral Palsy Hip Wynter (QPRS), Carly Dickinson (QPRS), Cate Biesot Surveillance Program (CPHS) has been operating using a (QPRS), Neil Wimalasundera (VPRS) virtual clinic model since 2013 to coordinate hip surveillance Learning Objectives: To understand: for children with cerebral palsy in the Child Health Network - - the indications and selection criteria for SDR in Northern in New South Wales. The aims of this program are: Australia and the clinical characteristics of the ideal candidate 1. Engage all children requiring cerebral palsy hip - the indications for and orthopaedic management surveillance of lower limb deformities in children post-SDR and 2. Ensure compliance with hip surveillance guidelines the rationale for long-term orthopaedic follow-up 3. Achieve early detection of hip displacement and - the bioethical issues involved with SDR in Australia prompt referral for orthopaedic review - To gain knowledge about the outcome evidence 4. Optimize health resource utilisation post-SDR across the ICF domains in the context of the child and family Objectives: A five year quality assurance audit was Summary of Content: Selective Dorsal Root Rhizotomy undertaken to evaluate how well the HNEkidsRehab (SDR) is a neurosurgical procedure used to reduce spasticity Cerebral Palsy Hip Surveillance Program has performed in in children with bilateral cerebral palsy (CP) aiming to achieving its stated objectives. improve gait and function. SDR has been utilised in Australia Summary of Content: Our audit demonstrated that our since 2003. SDR is an irreversible, time consuming procedure program is seeing 46% of the expected paediatric CP which requires intensive post-operative rehabilitation and population in our area. The geographic spread of our CPHS time commitment by children and their families. patients was skewed toward metropolitan areas. Referrals The decision whether an SDR is the most appropriate were primarily from our CPMD clinic and community management is a difficult one and requires a comprehensive physiotherapists. Significant issues were found with delay in multidisciplinary assessment, instrumented gait analysis in x-rays being completed and reports being issued. most instances and realistic goal setting with the child and Orthopaedic referral rate was lower than our comparison family. Selection criteria are clinically based and vary site (QPRS), with similar numbers ultimately undergoing between centres internationally. The selection criteria used surgery. We identified two patients with progressive hip in Australian will be presented and discussed. displacement and one with hip dislocation who had not Published evidence for outcomes post SDR in Australia is been referred to CPHS. All had CP-like conditions. limited however, follow up of a small group of children who Our audit included a survey of CPHS families and carers, have undergone SDR in Melbourne found short term which reflected difficulties in obtaining x-rays and improvements in spasticity, gait and gross motor function interpreting CPHS reports. We also included a survey of with emerging evidence for these to be maintained long potential referrers, which demonstrated that general term. paediatricians and GPs in our area want more information Outcomes will be discussed in the context of the ICF frame- about hip surveillance for children with CP and CP-like work with emphasis on participation, performance and conditions. family/child perspectives and will be a focus of interactive Implications and Recommendations for Current Clinical case discussions. Practice: We have undertaken several changes to our CPHS Musculoskeletal issues and outcomes affecting program since completing this audit, including renaming the children/adolescents who have undergone SDR will be program High Risk Hip Surveillance (HRHS) in order to explored and compared with children who have not had capture more children with CP-like conditions. We are SDR. working with families to improve access to x-rays and have The risk of complications following SDR is now considered changed our report format to make it more easily very low however clinicians may be cautious about understandable for families. We have also changed our suggesting SDR as a management option to families. The processes to improve timely review of x-rays. We have possible reasons for this will be explored and bioethical issued new educational materials about our HRHS program issues relating to SDR will be discussed. to general paediatricians and GPs in our area, and we are The Australian SDR Research Registry will be introduced and developing a GP HEalthpathway in conjunction with our local a potential early referral and assessment pathway will be primary health care network in order to facilitate referrals to explained. our service. Future Direction/s: We will plan to reassess our HRHS program in 2021 to evaluate the impact of our recent changes on achievement of the program’s objectives. 12
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