ObjectiveThe aim of this study was to determine the experience of patients with brain tumors and their carers across distinct parts of their treatment pathway and identify their views on potential service gaps in need of addressing.MethodsA structured survey was administered at patient workshops across the UK and online through a charity newsletter. Answers to closed questions were analyzed using descriptive statistics, and open questions were examined using techniques of inductive content analysis.ResultsA total of 136 survey responses were received, representing patients with a variety of diagnoses and geographical locations (30 counties). There was a wide range of opinions on the provision of current neuro-oncology services. Key themes identified included a perceived lack of information provision, a gap in postdischarge psychological and neuropsychological supports, and an unmet willingness for involvement in research.ConclusionThis national survey enhances our knowledge of current patient and carer experience within neuro-oncology services. A number of areas of unmet clinical need are highlighted providing a basis for informing future patient-centered service improvements and research.

IntroductionAcquired brain injury (ABI) is a major cause of morbidity and mortality in childhood. Specialist rehabilitation services are often situated far from families and local services may be non-standardised and fragmented. A strategic level of understanding is needed to improve patient care and outcomes. Roadmapping techniques are commonly used in industry settings to discover and present a systematic understanding of structures; however, they are rarely used in the healthcare setting. With continuing pressures on healthcare systems worldwide, they provide an effective method for examining services.MethodsThe Institute for Manufacturing (IfM) strategic roadmapping method was used to identify areas of difficulty and opportunities in paediatric neurorehabilitation. Participants included stakeholders from a wide range of professions and sectors who have input with children after ABI.ResultsDelegates identified a range of ‘layers’ covering trends, drivers, current experience and unmet needs. From these layers, four priorities were identified and further expanded.These included: ‘access to medical and therapy expertise close(r) to home’, ‘shared understanding across family, school and health’, ‘family and professional awareness of resources and support’ and ‘establishing a centre for rehabilitation technology evaluation, advice and co-ordination of services and research’.ConclusionThe IfM strategic roadmapping method identified and developed key areas for development in the field of paediatric neurological rehabilitation. Healthcare professionals looking at strategic level difficulties should strongly consider the use of such systematic tools when evaluating areas of practice.

ObjectivesTo identify current ‘gaps’ in clinical practice or therapeutic knowledge of the care of neonatal neurointensive care patients and to determine the impact healthcare technologies can have on improving outcomes.DesignThe Cambridge Institute for Manufacturing’s (IfM) roadmapping methodology.SettingCambridge, UK.Participants16 delegates were selected through professional networks. They provided coverage of academia and clinical skills, as well as expertise in neonatology, engineering and technology development.Main outcome measuresA ‘strategic landscape’ has been developed with ‘landmarks’ identified as ‘trends or drivers’, ‘patient pathway experience and unmet needs’ and ‘enabling project or resources’. Priorities were voted on by delegates.Results26 strategic ‘landmarks’ were identified, and of these 8 were considered ‘trends or drivers’, 8 ‘patient pathway experience and unmet needs’ and 10 as ‘enabling project or resources’. Of these, five priorities for the future of neonatal neurocritical care were identified by a voting process: real-time video monitoring for parents; individualised management of preterm infants in neonatal neurocritical care based on real-time multimodal monitoring; continuous electroencephalogram monitoring for early seizure diagnosis; neuroprotection: understanding basic mechanisms; and sleep measurement.ConclusionsThrough the use of the IfM methodology, a list of priorities has been developed for future work into improving the experience and possible outcomes of newborn infants with brain injuries and their families. While not an exhaustive list, it provides the beginning for a national conversation on the topic.