97% of which were accounted

for by conditions in only two ICD10 chapters. Only four LLC resulted in ten or more deaths (Table 2). 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. Malignancy (25%) and neurological conditions (21%) were the most frequent. Discussion Defining the population of Inhibitors,research,lifescience,medical children with life-limiting conditions accurately requires precise diagnoses. The aim of this study was to develop, and then to pilot, a list of life-limiting diagnoses in children that can be used for immediate secondary analysis of existing data. In children, the term ‘life-limiting condition’ encompasses non-malignant as well as malignant conditions and the range of conditions is wide. LLC in children, especially

in the UK, are conventionally classified Inhibitors,research,lifescience,medical by the ACT/RCPCH system [2,5,7,9], which relies for its validity on assumed commonality among the courses of diseases within each of four categories. Limited evidence [11] supports this concept, but the ACT/RCPCH categories as they stand are too Inhibitors,research,lifescience,medical vague to be effective as registration criteria and need to be supplemented by identifying precise diagnoses. We are not, of course, the first to recognise the need for specific data in service development. Lists of life-limiting conditions have been compiled before, notably by Knapp (personal communication 2011), Craig [9] and Feudtner [12,13]. The virtue of the ACT/RCPCH system is that it captures the

diversity of conditions that can limit life; our aim was to obtain useful precise data without losing that virtue. For Inhibitors,research,lifescience,medical the purposes of this study, a life-limiting condition is therefore a condition whose Inhibitors,research,lifescience,medical trajectory is plausibly described by one or more of the ACT/RCPCH archetypes. Diagnoses that emanated from hospices were not the same as those from specialist PPM services. Children’s hospices typically offer short respite stays and are often nurse-led. In until contrast, specialist PPM services are based around availability of specialist medical services. Although the two populations clearly significantly overlap, they are not precisely co-terminous [14], and combining them therefore further expanded the number of diagnoses on the list. It could be argued that some individual children with diagnoses that are not life-limiting conditions nevertheless require care that is, in effect, palliative. Traffic injuries [15], for example, do not fit an ACT/RCPCH Mdm2 inhibitors category. For children with severe injuries that lead to death, however, PPM services could have a valuable role such as supporting end-of-life discussions in intensive care. Perhaps this indicates a potential value in extending the ACT/RCPCH categories to reflect the broader role that might be played by PPM services.