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

AIM: To 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. METHOD: Data 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. RESULTS: Of 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. INTERPRETATION: Children 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. WHAT THIS PAPER ADDS: Children with learning disabilities must be consistently identified in populations so that their needs are made visible. Information about these needs must be collected from educational, health, and social care sources and scrutinized systematically. Children with learning disabilities and safeguarding needs have an increased incidence of hospital admissions and length of stay.

Austerity and families with disabled children: a European survey.

AIM: To describe the impact austerity measures have had on families with disabled children across Europe and on professionals providing services for them. METHOD: Cross-sectional surveys were disseminated via professional and family networks in 32 European countries for 3 months from December 2016. RESULTS: Families (n=731), of whom 45% met UNICEF criteria for severe poverty, and professionals (n=959) responded from 23 and 32 countries respectively. Respondents were grouped into those from countries with and without austerity. The direct and indirect impact of austerity cuts and worse working conditions were reported more often by professionals from countries with austerity, compared to those without. Most families reported services to be worse in quality than 3 years ago. Families with completely dependent disabled children said the needs of their disabled children are significantly less well met now, compared to 10 years ago. INTERPRETATION: A decline in quality of services for disabled children was reported by most family and many professional respondents across Europe, regardless of austerity. Where implemented, austerity measures were reported to have impacted significantly on families with disabled children. What this paper adds Stigma about disability remains a challenge in many countries across Europe. Most families and many health care professionals reported worsening quality of services than 3 years ago, regardless of austerity. Austerity cuts are reported to have impacted especially negatively on families with dependent disabled children.

The Health, Functioning and Wellbeing Summary Traffic Light Communication Tool: a survey of families' views.

AIM: To ascertain families' views about the utility of the Health, Functioning and Wellbeing Summary (HFWS) in positively supporting communication in clinics. METHOD: The HFWS was co-developed with families and members of the multidisciplinary team. A sequential convenience sample of 60 families who attended clinics in Sunderland, UK in 2015 agreed to participate and answered eight questions about their views on the tool's usefulness. Data were recorded and analysed in Microsoft Excel. RESULTS: All families agreed that they had been able to discuss everything they had wanted to discuss with the doctor. All of the serious concerns that they had recorded on the HFWS had been addressed in the consultation. Most (58 out of 60; 97%) reported that the tool was easy to understand and complete, and 57 out of 60 (95%) reported that it helped them to gather their thoughts about what they wanted to discuss. Consultations that used the tool were thought to better address the needs of 49 out of 60 families (87.1%), than those in which it was not used. INTERPRETATION: The HFWS was acceptable to most families surveyed, improved communication from their perspective, and ensured that the issues that mattered most to them were addressed in medical consultations. The tool has been translated into a number of other languages. Its acceptability and utility in other settings requires further study.

Prospective pilots of routine data capture by paediatricians in clinics and validation of the Disabilities Complexity Scale.

AIMS: To pilot prospective data collection by paediatricians at the point of care across England using a defined terminology set; demonstrate feasibility of data collection and utility of data outputs; and confirm that counting the number of needs per child is valid for quantifying complexity. METHOD: Paediatricians in 16 hospital and community settings collected and anonymized data. Participants completed a survey regarding the process. Data were analysed using R version 3.1.2. RESULTS: Overall, 8117 needs captured from 1224 consultations were recorded. Sixteen clinicians responded positively about the process and utility of data collection. The sum of needs varied significantly (p<0.01) by level of gross motor function ascertained using the Gross Motor Function Classification System for children with cerebral palsy; epilepsy severity as defined by level of expertise required to manage it; and by severity of intellectual disability. INTERPRETATION: Prospective data collection at the point of clinical care proved possible without disrupting clinics, even for those with the most complex needs, and took the least time when done electronically. Counting the number of needs was easy to do, and quantified complexity in a way that informed clinical care for individuals and related directly to validated scales of functioning. Data outputs could inform more appropriate design and commissioning of quality services.

Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and Disabilities Complexity Scale.

AIMS: To develop a Disabilities Terminology Set and quantify the multifaceted needs of disabled children and their families in a district disability clinic population. METHOD: Data from structured electronic clinic letters of children attending paediatric disability clinics from June 2007 to May 2012 in Sunderland, north-east England collected at the point of clinical care were analysed to determine appropriate terms for consistent recording of each need and issue. Terms were collated to count the number of needs per child. RESULTS: A Systemized Nomenclature of Medicine - Clinical Terms subset of 296 terms was identified and published, and 8392 consultations for 1999 children were reviewed. The required number of clinic appointments correlated strongly with the number of needs identified. Children with intellectual disabilities in addition to cerebral palsy and epilepsy had more than double the number of conditions, technology dependencies, and family-reported issues than those without. Disabled children who subsequently died had the highest burden of needs (p=0.007). INTERPRETATION: Detailed data about needs generated outputs useful for local care pathway development and service planning. Sufficient evidence was provided for successful business cases leading to the appointment of additional paediatric disability consultants. Counting numbers of needs and issues quantifies complexity in a straightforward way. This could underpin needs-based commissioning of services.

Magnetic resonance imaging of the brain in children and young people with cerebral palsy: who reports matters?

Retrospective case note audits were undertaken of children with clinically diagnosed cerebral palsy known to paediatricians and physiotherapists in Sunderland (UK). Evidence of brain magnetic resonance imaging (MRI) was recorded, including expert opinions requested, in order to quantify the perceived mismatch between local, general radiological and regional, specialist neuroradiological reporting, towards ensuring the best possible yield to inform clinical practice and accurate information-sharing with families. One hundred and ninety-seven out of 214 (92%) had documented neuroimaging; 111 out of 197 (56.3%) were dual reported. Only 34 out of 111 reports were concordant overall. Sixty per cent of brain MRI reported as normal locally, were found not to be normal on specialist review. Clinicians requesting brain MRI in children with disordered development must be mindful of the expertise of those reporting. Those based in district settings must network closely with specialists in expert centres, if disabled children and young people are to receive equitable care of the highest standard.

Assessment and investigation of the child with disordered development.

Every paediatrician, generalist or specialist, at every level and in every setting will come across the child or young person with disordered development and has a duty of care to ensure that appropriate assessment and investigations are undertaken, if each individual is to be given the best possible opportunities to achieve the highest possible level of participation and enjoy the best possible quality of life. Using a structured approach, all paediatricians have the potential to make a significant positive difference and should seek every opportunity to do so, even if seeing the child for an entirely different reason. Key messages of this article include: (1) each child is unique and requires careful, individual, clinical assessment and thought before any investigations are undertaken; (2) there is no single list of appropriate tests to be done for all children with disordered development; (3) the clinical judgement of the experienced clinician (expert triage) is more helpful than 'guidelines' in deciding which investigations to do; (4) clinical networking with colleagues in paediatric neurodisability, neurology, clinical genetics, metabolic paediatrics, and so on, is essential to achieve the highest possible yield from investigations and to reduce the number, discomfort and expense of inappropriate investigations; (5) the more effort and thought that goes into formulating differential diagnoses, the more appropriate the investigations are likely to be and the higher the likely diagnostic hit rate. Diagnostic hit rates up to 80% have been reported in the literature for those with severe learning disabilities and this is likely to be even higher once microarray comparative genomic hybridisation becomes more widely available.

[Improving Communication Quality Caring for Children with Chronic Conditions: Health, Functioning and Wellbeing Traffic-Light Tool]. / Verbesserung der Sprechstunde mit chronisch kranken Kindern: Gesundheits-, Funktions- und Wohlergehensampel.

Improving Communication Quality Caring for Children with Chronic Conditions: Health, Functioning and Wellbeing Traffic-Light Tool Abstract. Effective patient-doctor communication is a crucial aspect while caring for children with chronic conditions or disabilities. The Health, Functioning and Wellbeing Summary Traffic Light has been developed as a communication tool especially for these patients. In a two-month pilot phase the German version was evaluated by parents and physicians in a rehabilitation out-patient clinic setting. 71 % (n = 35/49) returned the evaluation form. The traffic-light tool was rated positive by 80 % of participants and physicians. It can be recommended as a useful tool for improved communication. The simple language version as well as translations into other languages and the use of a mobile App will facilitate its use. Its use is not limited to paediatrics and could be adapted for other disciplines.

Advance Care Planning: practicalities, legalities, complexities and controversies.

Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for paediatricians, families and their multidisciplinary teams to consider, reflect and record the outcome of their conversations about what might happen in the future in order to optimise quality of clinical care and inform decision-making. For some children and young people this will include discussions about the possibility of death in childhood. This may be unexpected and sudden, in the context of an otherwise active management plan or may be expected and necessitate discussions about the process of dying and attention to symptoms. Decision-making about appropriate levels of intervention must take place within a legal and ethical framework, recognising that the UK Equality Act (2010) protects the rights of disabled children and young people and infants and children of all ages to the same high quality healthcare as anyone else.