Data collection for study: Ongoing Publication date: November 2017
To identify the remediable factors in the quality of care provided to children and young people with chronic disabling conditions, focusing in particular on cerebral palsies.
To examine the interface between different care settings
To examine the transition of care
Access to services (including pathways of care and clinical leadership)
Service delivery (including uni/multi disciplinary care, outreach clinics, co-location of services)
Services for families with children and young people with cerebral palsies (including professionals with a range of expertise, procedures and interventions, and access to equipment)
Symptom management (including pain, posture and movement, associated conditions, communication support, and technology dependencies)
Support services (including family support, support in school, access to leisure activities, housing, finance and support at transition to adulthood)
Communication (including at diagnosis and in preparation for adulthood)
Training (for children and young people with cerebral palsies, families, and professionals (for those providing direct care and those across workforce sectors))
Safeguarding and social care
Transition to adult services
Decision making (with children, young people and families, capacity and best interest decision making)
Palliative and end of life care
The number of admissions and readmissions
Primary reason for hospital admission
Measures of morbidity
The rates of consultation in primary care
Educational achievement at KS1 and KS2 and the proportion of children with SEN
Data will be collected on all patients aged 25 and under, at the time of admission, who are admitted to hospital with one of the included diagnosis codes, during the study period. Data will be collected over a 6 week period, from Monday 7th September – Sunday 18th October 2015.
The following ICD10 codes will be used to help identify patients for inclusion:
G80.0 Spastic quadriplegic cerebral palsy
G80.1 Spastic diplegic cerebral palsy
G80.2 Spastic hemiplegic cerebral palsy
G80.3 Dyskinetic cerebral palsy
G80.4 Ataxic cerebral palsy
G80.8 Other cerebral palsy
G80.9 Cerebral palsy, unspecified
G81.0 Flaccid hemiplegia
G81.1 Spastic hemiplegia
G81.9 Hemiplegia, unspecified
G82.3 Flaccid tetraplegia
G82.4 Spastic tetraplegia
G82.5 Tetraplegia, unspecified
G83.0 Diplegia of upper limbs
G83.1 Monoplegia of lower limb
G83.2 Monoplegia of upper limb
G83.3 Monoplegia, unspecified
Patients will be identified across both acute and community hospitals
Participating Trusts/Health Boards:
All Trusts/Health Boards where children and young people (under 25) with cerebral palsy are cared for will be requested to participate in the study. These will include acute and community Trusts/Health Boards, as well as independent providers of care.
Sample size (to be determined):
In England, between 2013-2014, there were 32,288 admissions in children and young people (aged under 25), with an ICD10 code relating to cerebral palsy, (recorded anywhere). This equates to 620 admissions per week.
During the six week study period, a sample of approximately 3720 patients will be identified initially from which 1500 will be randomly selected for inclusion in the study.
Method of Case identification
Case identification spreadsheet
Within each Trust/Health Board NCEPOD has a Local Reporter (usually employed in clinical audit) who is responsible for providing the details of cases for inclusion to NCEPOD. At the start of the study the Local Reporter will be contacted and sent details of the study criteria. They will then use these details to populate the case identification spreadsheet.
Local reporters will be asked to populate the study spreadsheet using the listed ICD10 codes for patients admitted during the six week study period (Monday 7th September – Sunday 18th October 2015). Data collected will include patient identifiers (hospital and NHS/CHI number, date of birth, gender), date of admission, (the included) ICD10 code, date of discharge, discharge destination and the details of the clinicians who were involved in the care of the patient.
Details will also be requested on the spreadsheet of any previous admissions the patient has had in the four weeks prior to the study time period (Monday 10th August – Sunday 6th September 2015).
An organisational questionnaire will be sent to all Trusts/Health Boards where children and young people with cerebral palsy may be cared for, to collect data on the organisational aspects of care. Trusts/Health Boards will include both acute, community, and independent hospitals. Data collected will include information around pathways of care, transition, policies and protocols and communication.
The organisational questionnaire has been split into 10 sections which relate to the following specific areas of care:
Inpatient care – paediatrics
Outpatient care - paediatrics
Inpatient care – Young adults
Outpatient care – young adults
Allied health professionals – paediatric inpatient care
Allied health professionals – paediatric clinics
Allied health professionals – young adult clinics
Allied health professionals – young adult inpatient care
Local reporters should have already sent back an initial questionnaire which asks them to identify which of the 10 services they provide, and who the lead is for that service. The relevant sections of the organisational questionnaire are then being sent on to the service leads on the 11th April 2016 (via Local Reporters) to complete. The Medical Director will also be contacted and informed the questionnaire has been sent. The questionnaire will be available to download on this page from the 11th April 2016.
To download definitions for the organisational questionnaire, please see the download section at the right of the page.
Service User and Carer Questionnaire
A short patient and parent carer questionnaire is now available to complete electronically.
To take part in these questionnaires please click the following links.
This questionnaire is voluntary for service users to complete and will be used to gather data on young people and carers’ views on the services provided to them.
Two questionnaires will be used to collect data for this study:
Admitting physician/paediatrician questionnaire: A clinical questionnaire will be sent to the named consultant caring for the patient at the time of admission for completion and will ask for details of the care provided during the patient’s admission. The clinician details will be identified from the data collection spreadsheet.
Lead clinician questionnaire: A clinical questionnaire will be sent to the (lead) clinician who is responsible for the overall clinical care of the patient. It is anticipated the details of this clinician will be identified from the casenotes or the admitting physician/paediatrician questionnaire.
Where clinician details are not routinely recorded on PAS/RiO systems, NCEPOD will review the case notes in order to try and identify the correct clinician to send the questionnaire to for completion.
The clinical questionnaire will either be sent to the NCEPOD local reporter for dissemination or directly to the relevant clinician. Reminder letters will be sent at six weeks and ten weeks where the data is outstanding. Clinicians will be asked to return copied extracts of the patients case notes to NCEPOD alongside the completed questionnaire.
The following case note extracts will be requested:
Emergency Department records (where applicable)
Clinical notes from the time of arrival at hospital until the time of discharge
Operation notes and consent forms (where applicable)
Community therapy and nursing notes
Any outpatient appointment correspondence
Copies of General Practitioner (GP) notes
Clinical notes from any previous admissions (including discharge summaries) (between the 10th August – 18th October 2015)
Previous notes (going back three years from the included* admission)
*The admission for which the patient was identified as part of the sample
Discharge letters/Summaries for any previous hospital admissions
Upon receipt at NCEPOD the case notes will be checked and patient’s details anonymised.
Reviewers assessment form
A multidisciplinary group of reviewers (details below) will be recruited to assess the case notes and questionnaires and give their opinions on the quality of care via the reviewer assessment form.
National datasets will be used to identify trends in the management of children and young people with cerebral palsies. Data from sources such as the Office of National Statistics and clinical and public health datasets can be linked using NHS/CHI numbers and then anonymised. The data can then be used to answer specific questions about people’s journeys through the health system. Experienced data analysts will be employed to manage, quality control (clean, de-duplicate and check) and analyse the datasets. An epidemiologist/statistician will provide a descriptive analysis of the data and comparisons will be made according to socio-demographic characteristics such as social deprivation, age of the child, across devolved nations.
A pilot study will be undertaken to test the data collection methods and materials to ensure they are robust.
Analysis and Review of Data
A multidisciplinary group of reviewers are being recruited to assess the case notes and questionnaires and provide their opinion on the care the patients received. The advisor group will be made up of paediatricians, paediatric gastroenterologists, physicians/neurorehabilitation specialists, paediatric surgeons (including orthopaedics and neurosurgery), paediatric neurologists, neurologists, anaesthetists, specialist children’s nurses, physiotherapists, occupational therapists, speech and language therapists, orthotists, dieticians, palliative care specialists, psychiatrists, learning disability psychiatrists including for children and GPs.
Successful applicants will be asked to attend a training day on the 26th April 2016 in London, where they will assess the same two cases to ensure consistent marking. A number of meeting dates will be arranged, and each reviewer will then be asked to attend a further 6 meetings. There will be a mix of specialities involved and each meeting will be chaired by a clinical coordinator who will lead discussion around the cases under review. Towards the end of the study the reviewers will be invited to attend a meeting where the data will be presented to and discussed with them. The reviewers will also be sent two copies of the draft report for their comment as this is developed.
Confidentiality and data protection
Once the data have been extracted by the NCEPOD researchers, the questionnaires and casenotes will be anonymised to remove patient, clinician and hospital identifiers prior to review by the Advisory Group.
All electronic data are held in password protected files and all paper documents in locked filing cabinets. As soon as possible after receipt of data NCEPOD will encrypt electronic identifiers and anonymise paper documents. Section 251 approval has been obtained to perform this study without the use of patient consent.
On completion of the study a report will be published and widely disseminated.
We are currently recruiting Case note Reviewers for this study, please view more details about this role in the Download Links section of the page.
This webpage is updated regularly, so please check back for more information shortly.
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Frequently Asked Questions
I work at a specialist children’s unit or community hospital, do we need to participate?
Yes, we will be covering all centres that see children and young people, although the degree of input will vary. We will be in touch with you over the coming months, but in the meantime if you do not currently submit data to NCEPOD then please either call us on 0207 251 9060 or email us at email@example.com – with the reference of ‘child health’, to register your details.