Directory of life limiting conditions in children

Categories: Research.

The Directory of Life-Limiting Conditions (Hain and Devins, University of South Wales) is a list of nearly 400 ICD10 codes associated with diseases that can limit life in children. The list for the Directory was obtained in 2011 by pooling diagnostic data from a number of children’s hospices and specialist palliative medicine teams across the UK and combining it with data from death certificates.

The list, compiled by Dr RIchard Hain and Dr Mary Devins, is not exhaustive. The authors explain that there are conditions that would fulfil the criterion for ‘life-limiting’ that are not on the list simply because they were too rare to be captured by the method used. The directory is also not determinative, meaning that just because a condition appears on the list it does not automatically mean that the child with that condition will need specialist palliative care. This is because some of the conditions can present with a range of severity, such as cerebral palsy, some conditions only need palliative care at a certain stage of the illness and not all palliative care needs have to be addressed by specialist teams.

The directory is also not meant to be definitive as what is considered ‘life-limiting’ involves a degree of subjective judgement which is influenced by current understandings and by the availability of technology, both of which can change with time. At some time in the future, conditions on the list may become curable and thus no longer appropriate for inclusion. 
For any enquiries about the Directory (including comments or additions) you are requested to contact Dr Richard Hain by email at:

The Directory is available for download from the Together for Short Lives website and can be accessed here

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