Prevalence of life-limiting conditions in children and young people in England: Time trends by area type

Norman, Paul; Fraser, Lorna

doi:10.1016/j.healthplace.2014.01.002

Cited by 16 publications

(13 citation statements)

References 45 publications

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“…The prevalence increased in all age groups except under 1-year-olds suggesting, in common with earlier studies,1 2 19 that increased prevalence is due to improved survival times rather than increased incidence.…”

Section: Discussionsupporting

confidence: 82%

How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study

et al. 2016

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ObjectiveTo determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with a life limiting condition (LLC). DesignNational cohort of CYP with a LLC using linked routinely collected healthcare data. SettingScotland. Patients Main OutcomeClinical stage based on emergency inpatient and intensive care unit admissions and date of death. ResultsOver 2200 CYP with a LLC in Scotland were unstable, deteriorating or dying in each year. Compared to 1-5 year olds, under 1s had highest risk of instability (OR 6.4, 95% CI 5.7-7.1); all older age groups had lower risk. Girls were more likely to be unstable than boys (OR 1.15, 95% CI 1.06-1.24). CYP of South Asian (OR 1.61, 95% CI 1.28-2.01), Black (OR 1.58, 95% CI 1.04-2.41) and Other (OR 1.33, 95% 3 CI 1.02-1.74) ethnicity were more likely to experience instability than White CYP. Deprivation was not a significant predictor of instability. Compared to congenital abnormalities, CYP with most other primary diagnoses had a higher risk of instability, only CYP with a primary Perinatal diagnosis had significantly lower risk (OR 0.23, 95% CI 0.19-0.29). ConclusionsThe large number of CYP with a LLC who are unstable, deteriorating or dying may benefit from input from specialist pediatric palliative care. The under 1 age group and CYP of South Asian, Black and Other ethnicities should be priority groups. WHAT IS ALREADY KNOWN?National prevalence of children and young people with Life-Limiting Conditions is rising in England.Children and young people with Life-Limiting Conditions have complex health care needs often with repeated hospital admissions, particularly at end of life.

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Section: Discussionsupporting

confidence: 82%

How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study

et al. 2016

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“…Advances in neonatal and pediatric intensive care have led to improved survival, but a rising number of children survive with severe sequelae and life-limiting conditions. 1 In adult medicine, advance care planning (ACP) is increasingly being acknowledged as a way to improve patient-centered care at the end of life. 2 – 4 ACP is a formalized process of discussing a person’s values and preferences for care, aiming to guide future healthcare decisions.…”

Section: Introductionmentioning

confidence: 99%

“Hope for the best, prepare for the worst”: A qualitative interview study on parents’ needs and fears in pediatric advance care planning

et al. 2016

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Background:Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning.Aim:We aimed to investigate parents’ views and needs regarding pediatric advance care planning.Design:We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña.Setting/Participants:We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child’s illness, age at death, care setting, and parent gender.Results:Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning.Conclusion:Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.

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“…The same methods have been used to analyse changing deprivation for small areas in Australia. 16 In applied work, the resources have mainly been used for health related research of; infant mortality, 17 all cause mortality, 18,19 cause specific mortality; 20 limiting long-term illness and incapacity benefit, [21][22][23] of children with life limiting conditions 24,25 and in small animal veterinary practice. 26 Further topics include small area analyses of local democracy, 27 environmental equity, 28 traffic accidents 29 and fire risk.…”

Section: To Datementioning

confidence: 99%

Demographic and Health Time-Series Analysis of Small Areas in GB: The Development of Area Measures and Population Estimates

Norman¹

2017

MOJPH

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In health and other applied studies, there is a need for populations as denominators and measures of area type as covariates by time point and small area geographies. The work referred to here demonstrates how resources have been developed and made available to other researchers which subsequently has been reported in numerous journal articles. Some of the work has been area based and some about outcomes for individuals. Recently, the estimates and area type measures have been updated and extended so as to underpin current research. This work is ongoing and will be reported in time but the resources used as denominators and area types are now available to the wider research community. This short paper gives an overview of the relevant research and points others to the source of freely downloadable datasets. MOJ Public Health Short Communication Open Access Demographic and health time-series analysis of small areas in GB: the development of area measures and population estimates 379Copyright: ©2017 Norman Citation: Norman P. Demographic and health time-series analysis of small areas in GB: the development of area measures and population estimates.

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Prevalence of life-limiting conditions in children and young people in England: Time trends by area type

Cited by 16 publications

References 45 publications

How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study

How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study

“Hope for the best, prepare for the worst”: A qualitative interview study on parents’ needs and fears in pediatric advance care planning

Demographic and Health Time-Series Analysis of Small Areas in GB: The Development of Area Measures and Population Estimates

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