Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions.
Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year.
The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived.
In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.
"In applied work, these resources were used for health related research of; infant mortality (Norman et al. 2008), all cause mortality (Rees et al. 2003; Norman et al. 2011), cause specific mortality (Exeter et al. 2011); limiting long-term illness and incapacity benefit (Bambra and Norman 2006; Norman & Bambra 2007) and of children with life limiting conditions (Fraser et al. 2012; Norman & Fraser 2014). Further topics include small area analyses of local democracy (Norman et al. 2007), environmental equity (Mitchell & Norman 2012), traffic accidents (Lyons et al. 2009) and fire risk (Corcoran et al. 2007). "
[Show abstract][Hide abstract] ABSTRACT: This paper will describe the method being used to devise a time-series of area deprivation 1971 to 2011 using census data for all years harmonised to contemporary definitions of LSOAs / Datazones in GB. This involves identifying appropriate deprivation indicator variables from each census, converting data between boundary systems since these change over time and calculating deprivation such that change over time, rather than just cross-sectional deprivation, can be measured. Comparisons between censuses will be presented to show the degree of consistency or change in situation.
"Despite variations between countries, continuing improvements in medical care means increasing numbers of children with life-limiting and disabling conditions are surviving longer (Burns et al. 2010, Dybwik et al. 2011, Fraser et al. 2012) and many require palliative care (Downing et al. 2012). This diverse group of children have complex, often unpredictable, continuing care needs and may require technological intervention and/or palliative care for years (Department of Health 2011). "
[Show abstract][Hide abstract] ABSTRACT: Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain, as parents care for their child's complex, often unpredictable, continuing care needs. Rainbow Trust Children's Charity aims to bridge gaps in services for children with life-threatening or terminal conditions by providing family support workers (FSWs). The study used a range of methods (surveys, interviews and ethnographic observation) approach to explore key aspects of the work of the FSWs. The target population for the surveys was families with a child having complex, life-threatening or terminal conditions receiving care from FSWs. The participants included 55 families (12 bereaved) and 39 children aged 2-18 years. Thematic analysis revealed how the FSWs became a presence in families' lives in three main ways: (1) encompassing and embracing families through supporting needs and promoting resilience; (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness; and (3) accompanying and enduring by 'being with' families in different settings, situations and crises and by enduring alongside the families. The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is usually not provided by other services.
Journal of Child Health Care 01/2014; 19(3). DOI:10.1177/1367493513516391 · 0.88 Impact Factor
"To define the population of children needing palliative care in an essential first step in considering any research question that impacts specially on that group. The Directory has already been used for this purpose in research [16,17] and service development . Prevalence data, in particular, are key to rational service development, but for LLC there is no consistent relationship with incidence. "
[Show abstract][Hide abstract] ABSTRACT: Children's palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes.
The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007.
1590 diagnoses from children's hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions.
The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care.
BMC Palliative Care 12/2013; 12(1):43. DOI:10.1186/1472-684X-12-43 · 1.78 Impact Factor
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