Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records.

BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared.

Do current retinopathy of prematurity screening guidelines miss the early development of pre-threshold type 1 ROP in small for gestational age neonates?

PURPOSE: To investigate whether current UK retinopathy of prematurity (ROP) screening guidelines miss the early development of pre-threshold type 1 ROP in some neonates born small for gestational age (SGA) and consider if the guidelines should be changed. METHODS: Data were collected on neonates of < or =31 completed weeks gestation and/or birth weight (BW) < or =1500 g born over a 37-month period. Babies who did not complete the screening programme in Cambridge and those with other ocular abnormalities were excluded. We compared the time course of ROP progression and the development of the early treatment for ROP pre-threshold ROP in relation to the gestational age and the BW of the babies. RESULTS: A total of 105 neonates were included, 11 (10.5%) were born SGA (less than 9th centile of predicted BW). Of these 11, 2 (18.2%) had pre-threshold ROP at their first screen (median post-natal age (PNA) 6.5 weeks, median postmenstrual age (PMA) 33.5 weeks). No other neonate in this group developed pre-threshold ROP.Of the 94 other neonates, none had pre-threshold ROP at first screen (median PNA 7.1 weeks). Pre-threshold ROP developed in 12 (12.8%) of these babies between 8 and 12 (median 11.5) post-natal weeks, at a PMA of 33-38 (median 35.5) weeks. CONCLUSION: Current UK ROP screening guidelines recommend first screening at 6-7 post-natal weeks. Our study suggests that pre-threshold type 1 ROP can develop before this especially in SGA babies. We suggest that screening should either start at 4 post-natal weeks in such babies, or be based on PMA rather than PNA, to allow timely laser therapy.