Trends in hospital admissions during transition from paediatric to adult services for young people with learning disabilities or autism: population-based cohort study

Zylbersztejn, Ania; Stilwell, Philippa Anna; Zhu, Hannah; Ainsworth, Viki; Allister, Janice; Horridge, Karen; Stephenson, Terence; Wijlaars, Linda; Gilbert, Ruth; Heys, Michelle; Hardelid, Pia

doi:10.1016/j.lanepe.2022.100531

Cited by 3 publications

(5 citation statements)

References 32 publications

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“…Children with a learning disability, for whom there is currently no standardized pathway for the identification of their learning disability, nor a standardized flagging system, currently miss out on the proactive health care afforded by the GP learning disability health check in England and are invisible in routinely collected health data. Some researchers get around this by using lists of disorders known to be associated with a learning disability in more than 50% of cases 36 . However, such proxy measures do not yield the accurate, population‐based data required for service planning and the best possible proactive, personalized health care.…”

Section: Discussionmentioning

confidence: 99%

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Hospital admissions of school‐age children with an intellectual disability: A population‐based survey

Horridge

Bretnall

Fraser

2023

Develop Med Child Neuro

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AimTo describe the profiles of hospital admissions of school‐age children identified with a learning disability (ICD‐11 intellectual developmental disorder) and/or safeguarding needs compared to children without learning disability, in a population where proactive identification of learning disabilities in children is embedded in practice.MethodData were collected about the reasons for and duration of hospital admissions of school‐age children living in the study catchment area between April 2017 and March 2019; the presence (or absence) of learning disability and/or safeguarding flags in the medical record was also noted. The impact of the presence of flags on the outcomes was explored using negative binomial regression modelling.ResultsOf 46 295 children in the local population, 1171 (2.53%) had a learning disability flag. The admissions of 4057 children were analysed (1956 females; age range 5–16 years, mean 10 years 6 months, SD 3 years 8 months). Of these, 221 out of 4057 (5.5%) had a learning disability, 443 out of 4057 (10.9%) had safeguarding flags, 43 out of 4057 (1.1%) had both, and 3436 out of 4057 (84.7%) had neither. There was a significantly increased incidence of hospital admissions and length of stay in children with either or both flags, compared to children with neither.InterpretationChildren with learning disabilities and/or safeguarding needs have higher rates of hospital admissions than children without. Robust identification of learning disabilities in childhood is required to make the needs of this group visible in routinely collected data as the first step towards needs being appropriately addressed.

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Section: Discussionmentioning

confidence: 99%

“…Some researchers get around this by using lists of disorders known to be associated with a learning disability in more than 50% of cases. 36 However, such proxy measures do not yield the accurate, population-based data required for service planning and the best possible proactive, personalized health care.…”

Section: Discussionmentioning

confidence: 99%

Hospital admissions of school‐age children with an intellectual disability: A population‐based survey

Horridge

Bretnall

Fraser

2023

Develop Med Child Neuro

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“…These account for approximately 5% of all children starting primary school in 2008/2009–2018/2019, 10% of children with any recorded SEN provision during primary school and 30% of those with an EHCP. Some of the included conditions (such as autism or learning disability) are likely to be under-reported in hospital records 33…”

Section: Methods and Analysismentioning

confidence: 99%

“…Some of the included conditions (such as autism or learning disability) are likely to be under-reported in hospital records. 33 …”

Section: Methods and Analysismentioning

confidence: 99%

Evaluation of variation in special educational needs provision and its impact on health and education using administrative records for England: umbrella protocol for a mixed-methods research programme

Zylbersztejn,

Lewis,

Nguyen

et al. 2023

BMJ Open

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IntroductionOne-third of children in England have special educational needs (SEN) provision recorded during their school career. The proportion of children with SEN provision varies between schools and demographic groups, which may reflect variation in need, inequitable provision and/or systemic factors. There is scant evidence on whether SEN provision improves health and education outcomes.MethodsThe Health Outcomes of young People in Education (HOPE) research programme uses administrative data from the Education and Child Health Insights from Linked Data—ECHILD—which contains data from all state schools, and contacts with National Health Service hospitals in England, to explore variation in SEN provision and its impact on health and education outcomes. This umbrella protocol sets out analyses across four work packages (WP). WP1 defined a range of ‘health phenotypes’, that is health conditions expected to need SEN provision in primary school. Next, we describe health and education outcomes (WP1) and individual, school-level and area-level factors affecting variation in SEN provision across different phenotypes (WP2). WP3 assesses the impact of SEN provision on health and education outcomes for specific health phenotypes using a range of causal inference methods to account for confounding factors and possible selection bias. In WP4 we review local policies and synthesise findings from surveys, interviews and focus groups of service users and providers to understand factors associated with variation in and experiences of identification, assessment and provision for SEN. Triangulation of findings on outcomes, variation and impact of SEN provision for different health phenotypes in ECHILD, with experiences of SEN provision will inform interpretation of findings for policy, practice and families and methods for future evaluation.Ethics and disseminationResearch ethics committees have approved the use of the ECHILD database and, separately, the survey, interviews and focus groups of young people, parents and service providers. These stakeholders will contribute to the design, interpretation and communication of findings.

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“…Moreover, despite the concerted efforts to prevent such discrimination to happen, patients with chronic neurological disabilities might also be denied intensive care because of their perceived diminished quality of life, this issue being even more exacerbated by the recent pandemic [ 6 ]; in one study, patients with an intellectual disability were less likely to be admitted to the ICU for coronavirus disease 2019 (COVID-19) and to receive some treatments, such as non-invasive respiratory support and endotracheal intubation, than non-disable patients, even after adjustment for different comorbidities [ 7 ]. Furthermore, on top of these well-known clinical conditions, other forms of disabilities, including autism and Down's syndrome, are becoming growingly prevalent in the modern society; as most of these children are increasingly surviving to adulthood, the probability that some of them would require hospital and/or ICU admission is very high [ 8 ]. However, there is also a consistent risk that these patients could suffer from stigma and discrimination, and that an adequate level of ICU care may not be provided to them.…”

mentioning

confidence: 99%

Ableism in the intensive care unit

Taccone

2023

Intensive Care Med

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Trends in hospital admissions during transition from paediatric to adult services for young people with learning disabilities or autism: population-based cohort study

Cited by 3 publications

References 32 publications

Hospital admissions of school‐age children with an intellectual disability: A population‐based survey

Hospital admissions of school‐age children with an intellectual disability: A population‐based survey

Evaluation of variation in special educational needs provision and its impact on health and education using administrative records for England: umbrella protocol for a mixed-methods research programme

Ableism in the intensive care unit

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