Paediatric data capture terminology“Infopaedia 300”

How to guide

• This is a shortened version to help clinicians initially get to grips with the tool. Please refer to the explanatory glossary for more complete details.

• The tool is intended to support the record of >80-90% of the terminology relating to the child and family. Please use the best fit term/ most detailed term. If there is no terminology appropriate and it is a significant factor then a handwritten note can be added.

• The terms relate to current Snowmed CT terms or terms agreed as part of the HSCIC subset. Whilst there is a cross mapping tool available for Read/ICD 10 the “translation” is not always accurate

• This guide focusses on the top half of the form. Acute/general paediatric terms dominate the lower part of the form. These are grouped into systems and can be ticked as they apply to the child.

• The exploded parts of the A4 table are shown with a brief description underneath

• Code in as much detail as possible e.g moderate learning disability c.f learning difficulties; spastic bilateral cerebral palsy GMFCS 2. Simply tick or circle the terms applicable.

• Probable or working diagnosis is o.k for coding purposes. Possible suspected, impression or differential is not.

These codes refer to outcomes in which no diagnostic code can be assigned. This includes; unable to make a diagnosis or probable diagnosis; not a developmental condition i.e concerns but actually within normal range - such as delayed walking but normal e.g bottom shuffler. Also includes those in which the best category might be “medically unexplained”

The overall grouper category -Learning difficulties is in the top left. The other terms should be used to categorise the degree of l.d. Specific ld such as dyslexia are included in the bottom row. Edi/unspecified refers to a clinical impression of l.d but undetermined. This especially applies if preschool unclear severity

These refer to neurological conditions and syndromes. Chromsomal disorders can be used for those conditions, genetic syndromes for single gene conditions or clinical diagnosis by geneticists as well as microduplication/deletions – e.g microarray techniques.

The grouper category - physical disability (pd) is in the top left. Neurological condition, movement disorders and neuro muscular conditon related diagnoses follow. The last 2 rows refer to musculoskelatal conditions such as skeletal dysplasia, hypermobilty, and includes clumsiness impacting on daily skills but not confirmed dcd.

This table Includes non cerebral palsy brain abnormalities such as absent corpus callosum, heterotopia, cerebellar etc. It also includes acquired eg post hsv as well as traumatic brain injuries including those as a result of NAI. The 3rd row include CMV/torch in congenital infections, craniofacial/skull. The 4th row include specific congenital anomlalies with heart and genitourinary separate The last row relates to growth

These are C.P specific neuroimaging factors. The top row refers to whether Neuroimaging has been requested or otherwise.. The bottom row refers to the type and pattern of mri abnormality

These are cerebral palsy related diagnoses spCPuni r/l are right/left hemiparesis. The last row refers to mobilty level using gross motor function classification scale – 1 normal, 3 aids/kaye walker, 5 carer dependent plus head/axial support

These are various degrees of hearing or visual impairment. Tick/circle the categories that apply best.

The first row his includes impaired social interaction but not autism see table at bottom of this slide. The next 2 rows refer to feeding difficulties, nutritional risk and type of diet

Specify epilepsy /paroxysmal events. Note green table on next slide - other diagnoses and related condition relating to tertiary neurology, epilepsy surgery program. Also note complex epilepsy in markers of severity yellow table in last slide

Child protection /safeguarding terms. Includes intrafamilial risk

Mental health, includes school non attendance and selective mutism

The top two rows refer to autism, adhd +/- medication, tics. The 3rd row includes some other specific conditions that may or may not be associated. The 4th row includes iron and vitamin deficiency. The last row Includes prematurity/perinatal disease including hypoxic ischamic encephalopathy.

Top row includes pain – musculoskeletal or otherwise and includes epilepsy – that meeting nice criteria for paed neurology review i.e pilepsy ongoing after 2 years., unsuccessful after 2 drugs, under 2 years age., significant side effects, unilateral lesion, psych co-morbidity, diagnostic doubt. EpCESS – epilepsy surgery programme. Row 2 and 3 generic behaviour. Disruptive = challenging behaviour. Note sensory sensitivities. Rest of row 3 onwards relates to oral issues/reflux, urine and bowels, periods, sleep plus/minus melatonin, weight – faltering/obesity . Ent and skin. Note the “medical “lists at the bottom of the sheet can also be used to refine/record some of these.

Is an emergency care plan/resus/advanced care plan in place and agreed?The other categories are mainly parent reported difficulties and impact Impairment in participation – as reported.Family issues – include parental/sibling/other family physical health &or mental healthSchool issues – includes bullying, transport, attendance – though note school attendance in lilac table on previous slide. Don’t use if home educated.Housing - include bedroom tax pressures, home adaption/access needs.Equipment – posture, mobilty inc wheelchair, aac/communication though note in yellow table, last slide - markers of complexity, equipment related to respiratory, gastro included. Hearing aids are included in sensory – lilac table slide 4.Support – includes respite, as well as refer/ in need of review by other professionals e.g camhs, tertiary neuro, therapists, childrens services etcInformation – awaiting diagnosis and or signposting to info relating to the condition

This table is designed to capture aspects that are related to complexity. It is not exhaustive and just because a category is not ticked here this doesn’t suggest that the needs are straightforward

A) Includes round the clock supervision for care, physical or mental health such as for challenging behaviour, self care supervision etc

B) Locally we use the principle of “not being surprised” if the child were to have a life threatening episode

C) Tubes, wires as specified in the 2 rows following.D) AAC – communication aids or adaptation to communicate. Includes eye

gaze, includes pecs, makaton etc e.g. autism E) Epilepsy ongoing after 2 years., unsuccessful after 2 drugs, under 2 years

age. Significant side effects, unilateral lesion, psych co-morbidity, diagnostic doubt.

F) Cardiomyopathy confirmed - with or without treatmentG) Endocrine – not diabetes mellitusH) Safeguarding concerns – consider/suspect. Safeguarding categories in

pink table – middle of slide 5