Carer's perceptions of paediatric epilepsy services with and without epilepsy specialist nurses: A thematic analysis.

PURPOSE: To obtain in-depth perspectives from carers concerning their relationships with paediatric epilepsy services with and without an Epilepsy Specialist Nurse (ESN). METHODS: Semi-structured interviews with 58 carers, 37 from service areas with an ESN, and 21 from areas without an ESN in the North-West of England, were conducted and analysed using Thematic Analysis adopting a realist epistemological position. RESULTS: Four themes relating to different aspects of carers' needs were identified. These were needs for understanding the condition, ongoing condition management support, educational liaison support, and emotional support. The ESNs were able to meet these diverse support needs of families proactively and sensitively, whereas in services without ESNs, carers were left to attempt to fulfil needs across different contexts in an ad hoc manner. CONCLUSION: Paediatric ESNs provide an essential resource for both CWE, carers and other professionals involved in the care of CWE that helps to mitigate carer burden.

Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision.

PURPOSE: To compare paediatric epilepsy services with and without Epilepsy Specialist Nurse (ESN) provision on measures of carer satisfaction and accessibility of service. METHODS: In Study 1, carers in Northern England (n = 69 with an ESN, n = 27 without an ESN), completed the Parent Report of Psychosocial Care Scale to measure satisfaction with service provision. A measure of accessibility of service was also included. In Study 2, in depth semi-structured interviews with 58 carers (51 of whom had also participated in Study 1) were examined for talk related to accessibility of service. RESULTS: In Study 1, Satisfaction with service levels were high across all areas, (ESN areas Mdn = 9.04, IQR = 1.48, non-ESN areas Mdn = 8.29, IQR = 2.41; maximum score = 10), but with carers from ESN areas over 3 times more likely to endorse scores at the median or above relative to non-ESN areas (OR = 3.28). For accessibility, carers in ESN areas were over 5 times more likely to have a median score or higher (ESN areas Mdn = 10, IQR = 0.45, non-ESN areas Mdn = 8.4, IQR = 5, OR = 5.43). In study 2 a majority of all carers reported having made at least one attempt to contact services between appointments, for a wide range of reasons, with timely resolution reported in ESN areas, but more variable resolution occurring in non-ESN areas. CONCLUSION: Paediatric ESNs provide a critical and timely service to children with epilepsy and their carers.

Diagnosis and management of individuals with Fetal Valproate Spectrum Disorder; a consensus statement from the European Reference Network for Congenital Malformations and Intellectual Disability.

BACKGROUND: A pattern of major and minor congenital anomalies, facial dysmorphic features, and neurodevelopmental difficulties, including cognitive and social impairments has been reported in some children exposed to sodium valproate (VPA) during pregnancy. Recognition of the increased risks of in utero exposure to VPA for congenital malformations, and for the neurodevelopmental effects in particular, has taken many years but these are now acknowledged following the publication of the outcomes of several prospective studies and registries. As with other teratogens, exposure to VPA can have variable effects, ranging from a characteristic pattern of major malformations and significant intellectual disability to the other end of the continuum, characterised by facial dysmorphism which is often difficult to discern and a more moderate effect on neurodevelopment and general health. It has become clear that some individuals with FVSD have complex needs requiring multidisciplinary care but information regarding management is currently lacking in the medical literature. METHODS: An expert group was convened by ERN-ITHACA, the European Reference Network for Congenital Malformations and Intellectual Disability comprised of professionals involved in the care of individuals with FVSD and with patient representation. Review of published and unpublished literature concerning management of FVSD was undertaken and the level of evidence from these sources graded. Management recommendations were made based on strength of evidence and consensus expert opinion, in the setting of an expert consensus meeting. These were then refined using an iterative process and wider consultation. RESULTS: Whilst there was strong evidence regarding the increase in risk for major congenital malformations and neurodevelopmental difficulties there was a lack of high level evidence in other areas and in particular in terms of optimal clinical management.. The expert consensus approach facilitated the formulation of management recommendations, based on literature evidence and best practice. The outcome of the review and group discussions leads us to propose the term Fetal Valproate Spectrum Disorder (FVSD) as we feel this better encompasses the broad range of effects seen following VPA exposure in utero. CONCLUSION: The expert consensus approach can be used to define the best available clinical guidance for the diagnosis and management of rare disorders such as FVSD. FVSD can have medical, developmental and neuropsychological impacts with life-long consequences and affected individuals benefit from the input of a number of different health professionals.