Life Limiting conditions in children and young people in England: Prevalence and Survival
University of York · Academic
Expired The latest version ended on 22 January 2022. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-379681-D6L7G
- Latest version
- v4.6
- Term of latest version
- 23 January 2021 to 22 January 2022
- Start date
- Before 1 March 2018
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 0
Why the data was released
Objective for processing
University of York required data for the purpose of a study which looks at the survival of children and young people with life-limiting conditions.
Research in the Public Interest: There are currently little robust data available on the survival of children and young people with Life-limiting conditions (LLC) in England and therefore the length of time that they would benefit from children’s palliative and hospice services. Therefore planning the current and future need for these services is difficult. Although previous analyses of HES data (for a different project – i.e. RU451 which has been destroyed) showed an increasing prevalence of children with a LLC in England, data was requested for this specific project to fully investigate the current and future services needs of this population.
There are no risks to the public in this data dissemination
The aims of this study are to:
1. Assess survival until death from any cause for children and young people with life-limiting conditions in relation to demographic and clinical profiles (this can only be undertaken by having death certificate data).
2. Update the prevalence of children and young people with Life-limiting conditions in England (2000-2014).
3. Describe the trends in prevalence of Life-limiting conditions within ethnic minority groups within England (2009-2014).
A pseudonymised dataset of all hospital admissions (HES) for children with a LLC was requested from the Health and Social Care Information Centre (HSCIC) (now known as NHS Digital). This data was linked to the ONS death data if the child has died, the fields requested included date of death, place of death and cause of death.
Children with a LLC are identified in the HES data via ICD 10 codes. There are no controls
The long time series of these data are required in order to adequately assess survival in this population of children. National data is required as these are still relatively uncommon conditions. These data will not be used for benchmarking.
The project was funded from May 2014-October 2015 but due to the delay in accessing the data the analysis has been delayed therefore the study have identified that the data would be required for a further year from now to allow for changes to manuscripts after peer review.The University of York will be the data controller and data processor for this study.
Martin House have been funding a programme of research since 2008 and they have a genuine interest in funding research which provides a robust evidence base for the development of children’s palliative care services. Martin House will not be able to suppress or alter research findings. And do not have access to any of the data which has not been aggregated with small numbers suppressed in line with the HES analysis guide
The University have acknowledged that to increase the utility of the data analyses that they have undertaken to date under this agreement seeking an update to the data (3 further years of data) has allowed them to develop and test a prevalence model that estimates the prevalence of LLC in children and young people in England (objective 4). Planning services is a complex task and given the difficult funding climate being able to estimate the change in prevalence, and therefore need for services, that are very valuable to commissioners and service providers. Assessing changing place of death in the last year of life in this population will also assist in service planning. Both of these are included in the research protocol.
Processing activities
Objectives 1,2 & 3
NHS Digital has provided University of York with HES Admitted Patient Care data where a relevant ICD10 code is specified. A previously developed ICD10 coding framework was developed to identify children with a life-limiting condition (LLC), therefore all HES episodes for any individual who has ever had one of these ICD10 codes will be requested (aged 0-25 years at start of the episode).
The linked Civil Registration death data has been provided for deceased individuals identified as having a LLC in HES. The mortality data will not be used to identify individuals.
Data Analysis – Undertaken by University of York
The data are stored on the secure departmental server at the University of York. Role based access is used. Due to the pandemic data are being accessed remotely via a secure VPN that does not allow any data to be downloaded onto pcs or laptops.
Objectives 1,2 & 3
Age category is assigned to each individual by using the start age recorded at the first hospital episode in each year. Age will be categorised into six groups: less than 1 year, 1 to 5 years, 6 to 10 years, 11 to 15 years, 16 to 20 years and 21-25 years.
Gender is coded as male, female or not known. Individuals with more than one recorded gender are assigned the most commonly recorded gender.
Ethnicity is reported by census groups in the HES data. An index of multiple deprivation (IMD) score is assigned to each individual based on their Lower Super Output Area (LSOA) of residence.
Objectives 1,2 & 3
For statistical analysis the diagnoses is categorised into 11 groups based on the main ICD10 chapters: neurology, haematology, oncology, metabolic, respiratory, circulatory, gastrointestinal, genitourinary, perinatal, congenital and ‘other’. No attempt is made to prioritise multiple diagnoses for individuals therefore individuals may have more than one lifelimiting diagnosis.
Prevalence
Objectives 1,2
Population data from the Census is used as the denominator for prevalence calculations. Prevalence and 95% confidence intervals is calculated for the total number of children and young people with LLC for each year, for each age group, for each major diagnostic group, ethnic group and deprivation category. Trends over time will be assessed. Survival
Objective 1
The data from the Civil Registration Deaths data is used to identify patients who have died (date of death, place of death, cause(s) of death). Cause of death is assigned as related to the LLC or not related to the LLC. Survival is analysed using Kaplan Meier and Cox proportional hazards models. The main variables of interest in these models are survival by major diagnostic group, ethnic category and socio-economic status. The censoring date for the survival analyses is the date of data extraction.
Objective 4.
Data on the prevalence of children and young people with LLC from 2000-2012 is used to build a prevalence model to predict the prevalence of children and young people with LLC up to 2018. This model is assessed with the real data from the updated HES/ Civil Registration Deaths extract. This model is used to predict the prevalence of children with LLC in England until 2030 with appropriate confidence intervals.
The changing location of death ( home, hospital, hospice) over time is assessed to look at patterns of where children with specific conditions tend to die over time using the coded place of death data from the Mortality dataset.
There will be no data linkage undertaken with NHS Digital data provided under this agreement that is not already noted in the agreement.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data).
There will be no attempts made through the provision of the Data of Death shared under this agreement to identify any individuals.
Expected output
All outputs will be aggregated and anonymised with small numbers suppressed, in line with the HES analysis guide.
Conference and journal outputs will be available to clinicians, academics and members of the public who attend the conferences.
The final report will be disseminated to specialist commissioners, hospital trusts and the voluntary sector. Email alerts to highlight key outputs from the study will be coordinated through professional networks (Association for Paediatric Palliative Medicine and the RCPCH) and third sector organisations which the applicants are linked in to (e.g. Together for Short Lives).
Martin House as a funder received the final research report which Martin House has made available as a pdf download to other interested parties, patients, carers and the public.
Objectives 1,2 & 3
1. A final summary research report has been prepared for the funding body i.e. Martin House. This pdf report will be available via their website free of charge. - The final report ihas been launched.
Objectives 1,2 & 3
2. The study results have been presented at the Together for Short Lives conference in March 2020.
Objectives 1,2 & 3
3. This study results has been compiled for an academic publication in a peer review clinical paediatric journal. E.g. “archives of disease in childhood” - access to the data is requested for paper revisions.
The conference and journal outputs will be available to clinicians, academics and members of the public who may attend these conferences.
The final report has been disseminated to specialist commissioners, hospital trusts and the voluntary sector. Email alerts to highlight key outputs from the study will be coordinated through professional networks (Association for Paediatric Palliative Medicine and the RCPCH) and third sector organisations which the applicants are linked in to (e.g. Together for Short Lives).
Objective 4
The initial prevalence analyses using data up to 2014 has been completed and an abstract submitted to the international conference on children's palliative care.
An additional academic paper will be submitted for publication from the prevalence modelling work.
The final report for the funding body has been produced. This prevalence analyses is complete but the place of death is ongoing and an additional twelve months access to the data is required for paper revisions. Submission, reviews and publication of paper has been impacted by COVID-19 pandemic.
The final report for objectives 1- 3 is now published and available here https://www.york.ac.uk/media/healthsciences/documents/research/public-health/mhrc/Prevalence%20reportFinal.pdf . The paper has been accepted for publication in Palliative Medicine entitled "Estimating the current and future prevalence of Life-Limiting Conditions in Children in England"
The paper on place of death was submitted to Archives of disease in childhood and is currently under review.
Expected measurable benefits
Objectives 1,2 & 3
The results of this study will be very important for service planning and resource allocation for paediatric palliative care/children’s hospice services as the study will provide details of the number of patients who require these services and how long they require this service for. The hospital based paediatric palliative care services are NHS funded with the majority of children’s hospice services being provided by the voluntary sector. The data provided from this project will enable future provision and planning of both NHS and voluntary sector services to be based on robust data.
Objective 4 ultimately makes the data more usable for services, if services need planning then a forecast into the future is of benefit. As such that benefit of better planned services for this cohort will improve the experience and potentially lead to better outcomes.
Benefits reported so far
The benefit to date is that whilst analysing the current data, conversations with services and policy makers have enabled the study to realise that in order to plan services effectively the study need to be able to project these prevalence data into the future, not simply analyse historical data.
The main benefits that will be yielded need the study to disseminate the final figures, report and papers. This can only be done once the study have updated the analyses with the new data and added the prevalence modelling.
The data on future prevalence on the number of children with life-limiting conditions is available to all services and commissioners. This will enable more detailed service planning and ultimately more children accessing the services that they require, when they need them. These data will also be used by national charities to lobby for policy and funding changes.
The final report was launched in April 2020 ( delayed due to COVID). The launch webinar and subsequent webinar reached in excess of 400 participants. The data from this report is being used by regional children palliative care networks and NHS England for planning for children palliative care services.
Datasets on the latest version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(b)(ii)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Civil Registrations of Death - Secondary Care Cut | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| HES:Civil Registration (Deaths) bridge | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
No files recorded as released under this agreement.
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions — earlier versions existed before this site's records begin.
DARS-NIC-379681-D6L7G-v4.6 23 January 2021 to 22 January 2022
- Title
- Life Limiting conditions in children and young people in England: Prevalence and Survival
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 0
Datasets: Civil Registrations of Death - Secondary Care Cut; HES:Civil Registration (Deaths) bridge; Hospital Episode Statistics Admitted Patient Care (HES APC)
What changed from DARS-NIC-379681-D6L7G-v3.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2021-01-23 | |
| End date | 2022-01-22 |
Objective for processing
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period.
The following provides background information on the purpose of the original study:
[1 paragraph unchanged]
Research in the Public Interest:
There are currently little robust data available on the survival of children
[72 words unchanged]
to fully investigate the current and future services needs of this population.
There are no risks to the public in this data dissemination
[5 paragraphs unchanged]
Children with a LLC are identified in the HES data via ICD 10 codes. There are no controls
[1 paragraph unchanged]
The project was funded from May 2014-October 2015 but due to the
[23 words unchanged]
further year from now to allow for changes to manuscripts after peer
review.
review.The University of York will be the data controller and data processor for this study.
Martin House have been funding a programme of research since 2008 and
[47 words unchanged]
been aggregated with small numbers suppressed in line with the HES analysis
guide.
guide
Amendment 2018
The University have acknowledged that to increase the utility of the data analyses that they have undertaken to date under this agreement seeking an update to the data (3 further years of data) has allowed them to develop and test a prevalence model that estimates the prevalence of LLC in children and young people in England (objective 4). Planning services is a complex task and given the difficult funding climate being able to estimate the change in prevalence, and therefore need for services, that are very valuable to commissioners and service providers. Assessing changing place of death in the last year of life in this population will also assist in service planning. Both of these are included in the research protocol.
The University have acknowledged that to increase the utility of the data analyses that they have undertaken to date under this agreement seeking an update to the data (3 further years of data) will allow them to develop and test a prevalence model that will estimate the prevalence of LLC in children and young people in England (objective 4). Planning services is a complex task and given the difficult funding climate being able to estimate the change in prevalence, and therefore need for services, would be very valuable to commissioners and service providers. Assessing changing place of death in the last year of life in this population will also assist in service planning. Both of these are included in the research protocol.
Processing activities
The following provides background on the processing activities undertaken prior to this Agreement:
[4 paragraphs unchanged]
The data are stored on the secure departmental server at the University of York. Role based access is used. Due to the pandemic data are being accessed remotely via a secure VPN that does not allow any data to be downloaded onto pcs or laptops.
[5 paragraphs unchanged]
For statistical analysis the diagnoses is categorised into 11 groups based on
[21 words unchanged]
prioritise multiple diagnoses for individuals therefore individuals may have more than one
life-limiting
lifelimiting
diagnosis.
[2 paragraphs unchanged]
Population data from the Census is used as the denominator for prevalence
[30 words unchanged]
group, ethnic group and deprivation category. Trends over time will be assessed.
Survival
Survival
[3 paragraphs unchanged]
Data on the prevalence of children and young people with LLC from 2000-2012
will be
is
used to build a prevalence model to predict the prevalence of children and young people with LLC up to 2018. This model
will be
is
assessed with the real data from the updated HES/ Civil Registration Deaths extract.
Once validated this
This
model
will be
is
used to predict the prevalence of children with LLC in England until 2030 with appropriate confidence intervals.
The changing location of death ( home, hospital, hospice) over time
will be
is
assessed to look at patterns of where children with specific conditions tend to die over time using the coded place of death data from the Mortality dataset.
[3 paragraphs unchanged]
Expected output
[3 paragraphs unchanged]
Martin House as a funder
will receive
received
the final research report which Martin House
will make
has made
available as a pdf download to other interested parties, patients, carers and the public.
[1 paragraph unchanged]
1. A final summary research report
will be
has been
prepared for the funding body i.e. Martin
House (Target date Feb 2020).
House.
This pdf report will be available via their website free of charge. - The final report
is with the funder and will be launched in March 2020
ihas been launched.
[1 paragraph unchanged]
2. The study results will be prepared to present at an appropriate national or international clinical conference. e.g. the 3rd Congress in Paediatric Palliative Care (Target date Nov 2018) or Palliative Care Congress (Target date Oct 2019)
2. The study results have been presented at the Together for Short Lives conference in March 2020.
The results were expected to be presented at the Together for Short Lives conference in March 2020.
[1 paragraph unchanged]
3. This study results
will be
has been
compiled for an academic publication in a peer review clinical paediatric journal. E.g. “archives of disease in childhood”
(Target date February 2020 )
- access to the data is requested for paper revisions.
[1 paragraph unchanged]
The final report
will be
has been
disseminated to specialist commissioners, hospital trusts and the voluntary sector. Email alerts
[25 words unchanged]
which the applicants are linked in to (e.g. Together for Short Lives).
[1 paragraph unchanged]
The initial prevalence analyses using data up to 2014 has been completed and an abstract submitted to the international conference on children's palliative care.
The academic paper would be improved with the additional three years of data that we are requesting in this amendment.
An additional academic paper will be submitted for publication from the prevalence modelling
work (Feb 2020)
work.
The final report for the funding body
will be produced by Feb 2020 and will include all the analyses.
has been produced.
This prevalence analyses is complete but the place of death is ongoing and
will be complete by August 2020 therefore
an additional
six
twelve
months access to the data is required for paper revisions.
Submission, reviews and publication of paper has been impacted by COVID-19 pandemic.
The final report for objectives 1- 3 is now published and available here https://www.york.ac.uk/media/healthsciences/documents/research/public-health/mhrc/Prevalence%20reportFinal.pdf . The paper has been accepted for publication in Palliative Medicine entitled "Estimating the current and future prevalence of Life-Limiting Conditions in Children in England"
The paper on place of death was submitted to Archives of disease in childhood and is currently under review.
Expected measurable benefits
[2 paragraphs unchanged]
The addition of objective
Objective
4
will
ultimately
make
makes
the data more usable for services, if services need planning then a forecast into the future
will be
is
of benefit. As such that benefit of better planned services for this cohort will improve the experience and potentially lead to better outcomes.
Benefits reported
[2 paragraphs unchanged]
The data on future prevalence on the number of children with life-limiting conditions
will be
is
available to all services and
commissioners by Feb 2020.
commissioners.
This will enable more detailed service planning and ultimately more children accessing
[13 words unchanged]
be used by national charities to lobby for policy and funding changes.
This will be achieved once the report is launched in March 2020 and the paper later in 2020.
The final report was launched in April 2020 ( delayed due to COVID). The launch webinar and subsequent webinar reached in excess of 400 participants. The data from this report is being used by regional children palliative care networks and NHS England for planning for children palliative care services.
DARS-NIC-379681-D6L7G-v3.2 29 February 2020 to 22 January 2021
- Title
- Life Limiting conditions in children and young people in England: Prevalence and Survival
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 0
Datasets: Civil Registrations of Death - Secondary Care Cut; HES:Civil Registration (Deaths) bridge; Hospital Episode Statistics Admitted Patient Care (HES APC)
What changed from DARS-NIC-379681-D6L7G-v2.22
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-02-29 | |
| End date | 2021-01-22 | |
| Civil Registrations of Death - Secondary Care Cut: legal basis | Health and Social Care Act 2012 – s261(2)(b)(ii) |
Objective for processing
University of York requires data for the purpose of a study which looks at the survival of children and young people with life-limiting conditions.
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period.
There are currently little robust data available on the survival of children and young people with Life-limiting conditions (LLC) in England and therefore the length of time that they would benefit from children’s palliative and hospice services. Therefore planning the current and future need for these services is difficult. Although previous analyses of HES data (for a different project – i.e. RU451 which has been destroyed) showed an increasing prevalence of children with a LLC in England, data is requested for this specific project to fully investigate the current and future services needs of this population.
The following provides background information on the purpose of the original study:
University of York required data for the purpose of a study which looks at the survival of children and young people with life-limiting conditions.
There are currently little robust data available on the survival of children and young people with Life-limiting conditions (LLC) in England and therefore the length of time that they would benefit from children’s palliative and hospice services. Therefore planning the current and future need for these services is difficult. Although previous analyses of HES data (for a different project – i.e. RU451 which has been destroyed) showed an increasing prevalence of children with a LLC in England, data was requested for this specific project to fully investigate the current and future services needs of this population.
[4 paragraphs unchanged]
A pseudonymised dataset of all hospital admissions (HES) for children with a
[7 words unchanged]
Social Care Information Centre (HSCIC) (now known as NHS Digital). This data
is
was
linked to the ONS death data if the child has died, the fields requested
will include
included
date of death, place of death and cause of death.
[4 paragraphs unchanged]
The University have acknowledged that to increase the utility of the data
[97 words unchanged]
assist in service planning. Both of these are included in the research
protocol and supported by the ONS approval gateway.
protocol.
Processing activities
The following provides background on the processing activities undertaken prior to this Agreement:
[2 paragraphs unchanged]
The linked
ONS
Civil Registration
death data has been provided for deceased individuals identified as having a LLC in HES. The mortality data will not be used to identify individuals.
[12 paragraphs unchanged]
The data from the
ONS Death Certificate
Civil Registration Deaths
data is used to identify patients who have died (date of death,
[53 words unchanged]
censoring date for the survival analyses is the date of data extraction.
[1 paragraph unchanged]
Data on the prevalence of children and young people with LLC from
[24 words unchanged]
model will be assessed with the real data from the updated HES/
ONS
Civil Registration Deaths
extract. Once
validate
validated
this model will be used to predict the prevalence of children with LLC in England until 2030 with appropriate confidence intervals.
The changing location of death ( home, hospital, hospice) over time will
[14 words unchanged]
die over time using the coded place of death data from the
ONS
Mortality
dataset.
[2 paragraphs unchanged]
ONS Terms and Conditions will be adhered to.
[1 paragraph unchanged]
Expected output
[5 paragraphs unchanged]
1. A final summary research report will be prepared for the funding
[8 words unchanged]
This pdf report will be available via their website free of charge.
- The final report is with the funder and will be launched in March 2020
[2 paragraphs unchanged]
The results were expected to be presented at the Together for Short Lives conference in March 2020.
[1 paragraph unchanged]
3. This study results will be compiled for an academic publication in a peer review clinical paediatric journal. E.g. “archives of disease in childhood” (Target date
Oct 2019)
February 2020 ) - access to the data is requested for paper revisions.
[3 paragraphs unchanged]
The initial prevalence analyses using data up to 2014 has been completed and an abstract submitted to the international conference on
childrens
children's
palliative care. The academic paper would be improved with the additional three years of data that we are requesting in this amendment.
An additional academic paper will be submitted for publication from the prevalence modelling work
(Oct 2019).
(Feb 2020)
The final report for the funding body will be produced by Feb 2020 and will include all the analyses.
This prevalence analyses is complete but the place of death is ongoing and will be complete by August 2020 therefore an additional six months access to the data is required for paper revisions.
Benefits reported
[2 paragraphs unchanged] The data on future prevalence on the number of children with life-limiting [37 words unchanged] be used by national charities to lobby for policy and funding changes. This will be achieved once the report is launched in March 2020 and the paper later in 2020.
Unchanged: Expected measurable benefits.
Objective for processing
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period.
The following provides background information on the purpose of the original study:
University of York required data for the purpose of a study which looks at the survival of children and young people with life-limiting conditions.
There are currently little robust data available on the survival of children and young people with Life-limiting conditions (LLC) in England and therefore the length of time that they would benefit from children’s palliative and hospice services. Therefore planning the current and future need for these services is difficult. Although previous analyses of HES data (for a different project – i.e. RU451 which has been destroyed) showed an increasing prevalence of children with a LLC in England, data was requested for this specific project to fully investigate the current and future services needs of this population.
The aims of this study are to:
1. Assess survival until death from any cause for children and young people with life-limiting conditions in relation to demographic and clinical profiles (this can only be undertaken by having death certificate data).
2. Update the prevalence of children and young people with Life-limiting conditions in England (2000-2014).
3. Describe the trends in prevalence of Life-limiting conditions within ethnic minority groups within England (2009-2014).
A pseudonymised dataset of all hospital admissions (HES) for children with a LLC was requested from the Health and Social Care Information Centre (HSCIC) (now known as NHS Digital). This data was linked to the ONS death data if the child has died, the fields requested included date of death, place of death and cause of death.
The long time series of these data are required in order to adequately assess survival in this population of children. National data is required as these are still relatively uncommon conditions. These data will not be used for benchmarking.
The project was funded from May 2014-October 2015 but due to the delay in accessing the data the analysis has been delayed therefore the study have identified that the data would be required for a further year from now to allow for changes to manuscripts after peer review.
Martin House have been funding a programme of research since 2008 and they have a genuine interest in funding research which provides a robust evidence base for the development of children’s palliative care services. Martin House will not be able to suppress or alter research findings. And do not have access to any of the data which has not been aggregated with small numbers suppressed in line with the HES analysis guide.
Amendment 2018
The University have acknowledged that to increase the utility of the data analyses that they have undertaken to date under this agreement seeking an update to the data (3 further years of data) will allow them to develop and test a prevalence model that will estimate the prevalence of LLC in children and young people in England (objective 4). Planning services is a complex task and given the difficult funding climate being able to estimate the change in prevalence, and therefore need for services, would be very valuable to commissioners and service providers. Assessing changing place of death in the last year of life in this population will also assist in service planning. Both of these are included in the research protocol.
Expected output
All outputs will be aggregated and anonymised with small numbers suppressed, in line with the HES analysis guide.
Conference and journal outputs will be available to clinicians, academics and members of the public who attend the conferences.
The final report will be disseminated to specialist commissioners, hospital trusts and the voluntary sector. Email alerts to highlight key outputs from the study will be coordinated through professional networks (Association for Paediatric Palliative Medicine and the RCPCH) and third sector organisations which the applicants are linked in to (e.g. Together for Short Lives).
Martin House as a funder will receive the final research report which Martin House will make available as a pdf download to other interested parties, patients, carers and the public.
Objectives 1,2 & 3
1. A final summary research report will be prepared for the funding body i.e. Martin House (Target date Feb 2020). This pdf report will be available via their website free of charge. - The final report is with the funder and will be launched in March 2020
Objectives 1,2 & 3
2. The study results will be prepared to present at an appropriate national or international clinical conference. e.g. the 3rd Congress in Paediatric Palliative Care (Target date Nov 2018) or Palliative Care Congress (Target date Oct 2019)
The results were expected to be presented at the Together for Short Lives conference in March 2020.
Objectives 1,2 & 3
3. This study results will be compiled for an academic publication in a peer review clinical paediatric journal. E.g. “archives of disease in childhood” (Target date February 2020 ) - access to the data is requested for paper revisions.
The conference and journal outputs will be available to clinicians, academics and members of the public who may attend these conferences.
The final report will be disseminated to specialist commissioners, hospital trusts and the voluntary sector. Email alerts to highlight key outputs from the study will be coordinated through professional networks (Association for Paediatric Palliative Medicine and the RCPCH) and third sector organisations which the applicants are linked in to (e.g. Together for Short Lives).
Objective 4
The initial prevalence analyses using data up to 2014 has been completed and an abstract submitted to the international conference on children's palliative care. The academic paper would be improved with the additional three years of data that we are requesting in this amendment.
An additional academic paper will be submitted for publication from the prevalence modelling work (Feb 2020)
The final report for the funding body will be produced by Feb 2020 and will include all the analyses. This prevalence analyses is complete but the place of death is ongoing and will be complete by August 2020 therefore an additional six months access to the data is required for paper revisions.
Benefits reported
The benefit to date is that whilst analysing the current data, conversations with services and policy makers have enabled the study to realise that in order to plan services effectively the study need to be able to project these prevalence data into the future, not simply analyse historical data.
The main benefits that will be yielded need the study to disseminate the final figures, report and papers. This can only be done once the study have updated the analyses with the new data and added the prevalence modelling.
The data on future prevalence on the number of children with life-limiting conditions will be available to all services and commissioners by Feb 2020. This will enable more detailed service planning and ultimately more children accessing the services that they require, when they need them. These data will also be used by national charities to lobby for policy and funding changes. This will be achieved once the report is launched in March 2020 and the paper later in 2020.
DARS-NIC-379681-D6L7G-v2.22 1 March 2018 to 28 February 2020
- Title
- Life Limiting conditions in children and young people in England: Prevalence and Survival
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 0
Datasets: Civil Registrations of Death - Secondary Care Cut; HES:Civil Registration (Deaths) bridge; Hospital Episode Statistics Admitted Patient Care (HES APC)
Objective for processing
University of York requires data for the purpose of a study which looks at the survival of children and young people with life-limiting conditions.
There are currently little robust data available on the survival of children and young people with Life-limiting conditions (LLC) in England and therefore the length of time that they would benefit from children’s palliative and hospice services. Therefore planning the current and future need for these services is difficult. Although previous analyses of HES data (for a different project – i.e. RU451 which has been destroyed) showed an increasing prevalence of children with a LLC in England, data is requested for this specific project to fully investigate the current and future services needs of this population.
The aims of this study are to:
1. Assess survival until death from any cause for children and young people with life-limiting conditions in relation to demographic and clinical profiles (this can only be undertaken by having death certificate data).
2. Update the prevalence of children and young people with Life-limiting conditions in England (2000-2014).
3. Describe the trends in prevalence of Life-limiting conditions within ethnic minority groups within England (2009-2014).
A pseudonymised dataset of all hospital admissions (HES) for children with a LLC was requested from the Health and Social Care Information Centre (HSCIC) (now known as NHS Digital). This data is linked to the ONS death data if the child has died, the fields requested will include date of death, place of death and cause of death.
The long time series of these data are required in order to adequately assess survival in this population of children. National data is required as these are still relatively uncommon conditions. These data will not be used for benchmarking.
The project was funded from May 2014-October 2015 but due to the delay in accessing the data the analysis has been delayed therefore the study have identified that the data would be required for a further year from now to allow for changes to manuscripts after peer review.
Martin House have been funding a programme of research since 2008 and they have a genuine interest in funding research which provides a robust evidence base for the development of children’s palliative care services. Martin House will not be able to suppress or alter research findings. And do not have access to any of the data which has not been aggregated with small numbers suppressed in line with the HES analysis guide.
Amendment 2018
The University have acknowledged that to increase the utility of the data analyses that they have undertaken to date under this agreement seeking an update to the data (3 further years of data) will allow them to develop and test a prevalence model that will estimate the prevalence of LLC in children and young people in England (objective 4). Planning services is a complex task and given the difficult funding climate being able to estimate the change in prevalence, and therefore need for services, would be very valuable to commissioners and service providers. Assessing changing place of death in the last year of life in this population will also assist in service planning. Both of these are included in the research protocol and supported by the ONS approval gateway.
Expected output
All outputs will be aggregated and anonymised with small numbers suppressed, in line with the HES analysis guide.
Conference and journal outputs will be available to clinicians, academics and members of the public who attend the conferences.
The final report will be disseminated to specialist commissioners, hospital trusts and the voluntary sector. Email alerts to highlight key outputs from the study will be coordinated through professional networks (Association for Paediatric Palliative Medicine and the RCPCH) and third sector organisations which the applicants are linked in to (e.g. Together for Short Lives).
Martin House as a funder will receive the final research report which Martin House will make available as a pdf download to other interested parties, patients, carers and the public.
Objectives 1,2 & 3
1. A final summary research report will be prepared for the funding body i.e. Martin House (Target date Feb 2020). This pdf report will be available via their website free of charge.
Objectives 1,2 & 3
2. The study results will be prepared to present at an appropriate national or international clinical conference. e.g. the 3rd Congress in Paediatric Palliative Care (Target date Nov 2018) or Palliative Care Congress (Target date Oct 2019)
Objectives 1,2 & 3
3. This study results will be compiled for an academic publication in a peer review clinical paediatric journal. E.g. “archives of disease in childhood” (Target date Oct 2019)
The conference and journal outputs will be available to clinicians, academics and members of the public who may attend these conferences.
The final report will be disseminated to specialist commissioners, hospital trusts and the voluntary sector. Email alerts to highlight key outputs from the study will be coordinated through professional networks (Association for Paediatric Palliative Medicine and the RCPCH) and third sector organisations which the applicants are linked in to (e.g. Together for Short Lives).
Objective 4
The initial prevalence analyses using data up to 2014 has been completed and an abstract submitted to the international conference on childrens palliative care. The academic paper would be improved with the additional three years of data that we are requesting in this amendment.
An additional academic paper will be submitted for publication from the prevalence modelling work (Oct 2019).
The final report for the funding body will be produced by Feb 2020 and will include all the analyses.
Benefits reported
The benefit to date is that whilst analysing the current data, conversations with services and policy makers have enabled the study to realise that in order to plan services effectively the study need to be able to project these prevalence data into the future, not simply analyse historical data.
The main benefits that will be yielded need the study to disseminate the final figures, report and papers. This can only be done once the study have updated the analyses with the new data and added the prevalence modelling.
The data on future prevalence on the number of children with life-limiting conditions will be available to all services and commissioners by Feb 2020. This will enable more detailed service planning and ultimately more children accessing the services that they require, when they need them. These data will also be used by national charities to lobby for policy and funding changes.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
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July 2021 —
already listed in the earliest edition this site holds, so it may be older. 3 versions: DARS-NIC-379681-D6L7G-v2.22, DARS-NIC-379681-D6L7G-v3.2, DARS-NIC-379681-D6L7G-v4.6
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December 2022
Register-wide edit DARS-NIC-379681-D6L7G-v2.22, DARS-NIC-379681-D6L7G-v3.2, DARS-NIC-379681-D6L7G-v4.6 — Datasets: legal basis: “
s261(1) and” taken out. Made to 639 agreements in this edition, so it is reported once, on the changes page, and not counted as an amendment of this agreement. -
June 2023
Amended DARS-NIC-379681-D6L7G-v2.22
- Civil Registrations of Death - Secondary Care Cut: legal basis:
“
2007;” became “2007 ;”
- Civil Registrations of Death - Secondary Care Cut: legal basis:
“
"Amended in place" means NHS England changed the record without issuing a new version number. The register publishes no changelog for those edits; this site infers them by comparing editions. An edit is attributed to the edition it first appears in, not to the date it was made.
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-379681-D6L7G, “Life Limiting conditions in children and young people in England: Prevalence and Survival”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-379681-d6l7g/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-379681-D6L7G to see the original rows.