Informing knowledge translation for selective dorsal rhizotomy: A survey of Australian clinicians and people with lived experience of cerebral palsy.

AIM: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention used to reduce spasticity in children with cerebral palsy (CP). There is minimal relevant, evidence-based information available for Australian families and clinicians. This study aims to investigate the knowledge of people with lived experience and clinicians regarding SDR, including how they currently access information and what information they seek. METHODS: Adults with CP, carers of children with CP and clinicians treating children with CP were invited to complete an online survey. Data regarding participant demographics, current knowledge and confidence in knowledge about CP and SDR, information source/s used and participants level of trust in these sources are presented as counts and percentages. Comparisons in knowledge between groups were analysed. RESULTS: A total of 114 surveys were completed: 63 clinicians, 48 carers, and 3 adults with CP. Eighty percent of clinicians were allied health professionals. People with lived experience were less confident in their knowledge about SDR compared to knowledge of CP (P < 0.001). Clinicians rated scientific research literature and the hospital team as the most useful and trustworthy information source. People with lived experience used a wider range of information sources including the internet, rating their community therapy team and other people with lived experience as the most useful. CONCLUSION: This study identified a lack of confidence in knowledge of SDR for people with lived experience, likely due to a gap in accessible and readable evidence-based information. While both groups differed in how they access information, there was agreement that greater information about SDR is needed.

Brain volume abnormalities and clinical outcomes following paediatric traumatic brain injury.

Long-term outcomes are difficult to predict after paediatric traumatic brain injury. The presence or absence of focal brain injuries often do not explain cognitive, emotional and behavioural disabilities that are common and disabling. In adults, traumatic brain injury produces progressive brain atrophy that can be accurately measured and is associated with cognitive decline. However, the effect of paediatric traumatic brain injury on brain volumes is more challenging to measure because of its interaction with normal brain development. Here we report a robust approach to the individualized estimation of brain volume following paediatric traumatic brain injury and investigate its relationship to clinical outcomes. We first used a large healthy control dataset (n > 1200, age 8-22) to describe the healthy development of white and grey matter regions through adolescence. Individual estimates of grey and white matter regional volume were then generated for a group of moderate/severe traumatic brain injury patients injured in childhood (n = 39, mean age 13.53 ± 1.76, median time since injury = 14 months, range 4-168 months) by comparing brain volumes in patients to age-matched controls. Patients were individually classified as having low or normal brain volume. Neuropsychological and neuropsychiatric outcomes were assessed using standardized testing and parent/carer assessments. Relative to head size, grey matter regions decreased in volume during normal adolescence development whereas white matter tracts increased in volume. Traumatic brain injury disrupted healthy brain development, producing reductions in both grey and white matter brain volumes after correcting for age. Of the 39 patients investigated, 11 (28%) had at least one white matter tract with reduced volume and seven (18%) at least one area of grey matter with reduced volume. Those classified as having low brain volume had slower processing speed compared to healthy controls, emotional impairments, higher levels of apathy, increased anger and learning difficulties. In contrast, the presence of focal brain injury and microbleeds were not associated with an increased risk of these clinical impairments. In summary, we show how brain volume abnormalities after paediatric traumatic brain injury can be robustly calculated from individual T1 MRI using a large normative dataset that allows the effects of healthy brain development to be controlled for. Using this approach, we show that volumetric abnormalities are common after moderate/severe traumatic brain injury in both grey and white matter regions, and are associated with higher levels of cognitive, emotional and behavioural abnormalities that are common after paediatric traumatic brain injury.

'Life-changing surgery': English-language news media representation of selective dorsal rhizotomy.

BACKGROUND: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention to reduce spasticity in children with cerebral palsy. Parents researching SDR for their child may be influenced by framing of SDR in news media articles they read. This study examined framing of SDR in English-language news media. METHODS: Content analysis of English-language news media articles including the search term 'rhizotomy' in the Factiva database published July 2015 to July 2018 in online or print form in Canada, New Zealand, Australia, United States of America and the United Kingdom. RESULTS: One hundred and eighty-six articles were identified describing 91 different children (45 male), almost all with cerebral palsy, median age 4 years old. One hundred and twenty-six articles were written prior to surgery; in many articles, SDR surgery involved travel overseas and/or fundraising. SDR was described universally in positive terms with little discussion of risks. Content of articles variably included the specialized nature of SDR, parental frustration with their local health system and their hope for positive outcomes. There was geographical variation in both numbers of articles and content. CONCLUSIONS: SDR is a common focus in cerebral palsy news media articles in some countries. Framing in these articles supports SDR as a beneficial and specialized procedure and may lead families to believe they need to work outside their local health systems. As news media are likely an important influence on families' attitudes to SDR, clinicians should be aware of this influence.

Paediatric clinicians' experiences of parental online health information seeking: A qualitative study.

AIM: The aim of this research was to explore clinicians' experiences of parents' online health information seeking (OHIS) behaviour about selective dorsal rhizotomy for the management of cerebral palsy. METHODS: Using qualitative methodology, clinicians likely to have had experience with parents requesting selective dorsal rhizotomy were invited to participate in semi-structured interviews. Interviews with 13 clinicians were recorded, transcribed and inductive content analysis was used to identify, code and organise the data into themes. RESULTS: Participants highlighted how parental OHIS was changing clinical communication. Negative effects included a shift in clinicians' attention from giving advice and guidance to spending time discussing online findings, justifying how this information applies to a particular child and managing parents' judgments about clinical views. Positive effects included more collaboration and sharing of ideas. These results are presented in three main themes: (i) the informed parent; (ii) the clinicians' role; and (iii) a new clinical dynamic. CONCLUSION: This research reinforces the notion that OHIS is changing the communication dynamic and clinicians' and parents' roles within the clinical encounter. Of significance was the number of challenges clinicians are facing as a result of online information, including managing parental understanding of non-evidenced information and responding to negative feedback about their practice. This research suggests a need for educational support and ongoing professional development for clinicians to assist them to adjust to new goals and expectations of clinical interactions with 'informed' parents.

Current thinking in the health care management of children with cerebral palsy.

Cerebral palsy is a developmental disorder of movement and posture which is often associated with comorbidities. While there is currently a limited range of evidence-based treatments that change the underlying pathology of cerebral palsy, there are many areas in which health care professionals can change the natural history of cerebral palsy and improve participation and quality of life for children with this condition. Early identification has become of paramount importance in the management of cerebral palsy, and it is hoped that it will allow earlier access to cerebral palsy interventions that may improve the natural history of the condition. Common challenges in the management of cerebral palsy include spasticity and dystonia, management of pain, hip surveillance, sleep and feeding, swallowing and nutrition. The six Fs framework (function, family, fitness, fun, friends and future) provides a guide to developing shared goals with families in the management of cerebral palsy.

Cerebral palsy.

Cerebral palsy has always been known as a disorder of movement and posture resulting from a non-progressive injury to the developing brain; however, more recent definitions allow clinicians to appreciate more than just the movement disorder. Accurate classification of cerebral palsy into distribution, motor type and functional level has advanced research. It also facilitates appropriate targeting of interventions to functional level and more accurate prognosis prediction. The prevalence of cerebral palsy remains fairly static at 2-3 per 1000 live births but there have been some changes in trends for specific causal groups. Interventions for cerebral palsy have historically been medical and physically focused, often with limited evidence to support their efficacy. The use of more appropriate outcome measures encompassing quality of life and participation is helping to deliver treatments which are more meaningful for people with cerebral palsy and their carers.

Responding to the 'crowd' of voices and opinions in the paediatric clinical space: an ethics perspective.

Ready access to the internet and online sources of information about child health and disease has allowed people more 'distant' from a child, family and paediatric clinician to inform and influence clinical decisions. It has also allowed parents to share aspects of their child's health and illness to garner support or funding for treatment. As a consequence, paediatric clinicians must consider and incorporate the crowd of opinions and voices into their clinical and ethical reasoning.We identify two key ethical principles and related ethics concepts foundational to this task. We then propose a series of exploratory ethics questions to assist paediatric clinicians to engage ethically with the multiple voices in the clinical encounter while keeping the child's needs as a central focus. Using two clinical hypothetical case examples, we illustrate how our proposed ethics questions can assist paediatric clinicians to navigate the crowd in the room and bring moral reasoning to bear.We highlight a need for specific practical interactional skills training to assist clinicians to ethically respond to the crowd in the room, including to identify and weigh up the harms and benefits of endorsing or going against proposed treatments for a child, and how to discuss social media and online sources of information with parents.

Selective dorsal rhizotomy: current state of practice and the role of imaging.

Spastic diplegic cerebral palsy (CP) is the most common form of CP. A specific goal-oriented approach, tailored to the child, is essential to management in all forms of CP. Selective dorsal rhizotomy (SDR) is a neurosurgical procedure that permanently reduces lower limb spasticity in children with spastic diplegic CP. The current technique is performed through a single level laminectomy at the level of the conus and, with the aid of intraoperative electromyography (EMG), allows selective division of the afferent lumbosacral nerve roots. In carefully selected children, reduction in spasticity has positive effects on the growing child. SDR is associated with minimal complications and good long-term outcomes. This article describes the surgical technique and patient selection, including the importance of medical imaging, and discusses the long-term outcomes of SDR.

Single-level selective dorsal rhizotomy for spastic cerebral palsy.

The management of cerebral palsy (CP) is complex and requires a multidisciplinary approach. Selective dorsal rhizotomy (SDR) is a neurosurgical technique that aims to reduce spasticity in the lower limbs. A minimally invasive approach to SDR involves a single level laminectomy at the conus and utilises intraoperative electromyography (EMG). When combined with physiotherapy, SDR is effective in selected children and has minimal complications. This review discusses the epidemiology of CP and the management using SDR within an integrated multidisciplinary centre. Particular attention is given to the single-level laminectomy technique of SDR and its rationale, and the patient workup, recovery and outcomes of SDR.

Selective dorsal rhizotomy: an old treatment re-emerging.

Selective dorsal rhizotomy (SDR) is a neurosurgical technique developed to reduce spasticity and improve mobility in children with cerebral palsy (CP) and lower extremity spasticity. It involves the selective division of lumbosacral afferent (sensory) rootlets at the conus or at the intervertebral foramina under intraoperative neurophysiological guidance. First described in 1908, early procedures were effective at reducing spasticity but were associated with significant morbidity. Technical advancements over the last two decades have reduced the invasiveness of the procedure, typically from a five-level laminoplasty to a single-level laminotomy at the conus. As practised today, SDR is an effective treatment for young patients with bilateral spastic CP who are rigorously selected for surgery and for whom realistic objectives are set. SDR has therefore re-emerged as a valuable management option for spastic CP. In this article, the authors review the single-level SDR technique and its role in the management of bilateral spastic CP, with particular emphasis on patient selection and outcomes.

The influence of gestation and mechanical ventilation on serum clara cell secretory protein (CC10) concentrations in ventilated and nonventilated newborn infants.

Clara cell secretory protein (CC10) is an important anti-inflammatory mediator in the adult lung, but its role in newborn pulmonary protection is uncertain. We examined the early postnatal behavior of CC10 in newborn serum and tracheal fluid and hypothesized that CC10 production is positively influenced by gestation. Blood from 165 infants from the first, third/fourth, and seventh days of life (gestational ages: 23-29 wk, 30-36 wk, >36 wk) and tracheal fluid (TF) from the first day of life from 32 ventilated infants were analyzed for CC10. Surfactant proteins A (SPA) and B (SPB) were also analyzed from the blood of a subgroup of infants. Serum CC10 on day 1 was highest in term infants (69.4 ng/mL), followed by moderately preterm (55.8 ng/mL), and then extremely preterm infants (median 42.1 ng/mL). Term infants also had higher tracheal fluid CC10 than preterm infants. (20.152 ng/mL versus 882 ng/mL). Mechanical ventilation increased serum CC10 only in moderately preterm infants, and only on d 1 [68.4 ng/mL versus 42.1 ng/mL (nonventilated moderately preterm infants)]. Serum CC10 decreased progressively by the end of the first week in all infants, in contrast to SPA and SPB, which increased. Our results show that CC10 is detectable in the blood of newborn infants and that a production surge occurs at birth. This surge is more pronounced in term infants and may confer them with superior extrauterine pulmonary protection compared with preterm infants.