Background/contextThe unexpected death of a child is an infrequent and sporadic event. Many health professionals feel underprepared for facing this challenging task.1,2 An inter-professional simulation day was designed to help prepare learners for being faced with unexpected child death.The day comprised introductory lectures, 2 high fidelity simulations of unsuccessful resuscitations including a simulated parent and communication skills sessions addressing breaking bad news.MethodologyImmediate feedback was sought on the day and a follow up questionnaire was sent 4 months later to further explore the educational value.Results/outcomesThe pilot day had 9 participants (medical and nursing staff) – 8 answered the follow up questionnaire.The group had varied prior experience. 50% had no previous formal training on child death procedures or breaking bad news. A significant proportion (5 of 8) had either no experience or had only been the primary deliverer of bad news on fewer than 5 occasions. Limited exposure to informal training opportunities including observation of such encounters and feedback within the work place were also reported.Participants rated this training day positively; with an increase in self-reported confidence in their knowledge around the topic and approaching communication of bad news to parents and families.Simulated parents were rated as being very useful and being immersed in high fidelity simulation prior to these difficult discussions was viewed as helpful; increasing the realism.Conclusions and recommendationsWe have highlighted an area of practice where self-reported confidence is low as a result of limited opportunities for training and feedback that stem from unexpected child death being an infrequent event. This pilot simulation day was well received and resulted in an increased confidence amongst participants. Plans are in place to further this training and to widen the multi disciplinary team involvement.ReferencesHarrison ME, Walling A. What do we know about giving bad news? A Review. Clin Pediatr 2010;49(7):619–626Meyer EC, et al. Difficult conversations: Improving communication skills & relational abilities in health care. Pediatr Crit Care Med. 2009;10:352–359
Case history A 4 year old, previously well male child developed progressive weakness of lower limbs manifesting as frequent falls and difficulty in lifting himself up. Over the next nine months he lost his ability to climb stairs and run and became wheelchair bound. During this course he also developed bony deformity of knees. On examination there was profound proximal muscle weakness in the lower limbs. Bilateral genu valgum became more obvious during the later stages. He underwent extensive investigation for neuromuscular disease, but a definitive diagnosis could not be made initially.Investigations His 25 hydroxy Vitamin D level was insufficient (38 nmol/L) with a low serum phosphate level. Investigations for neuromuscular disorders were negative, with a normal CPK, SMN gene and MRI brain. A bone profile repeated almost a year after initial presentation, showed persistently low plasma phosphate (0.6 mmol/L) with normal calcium, mildly elevated alkaline phosphatase and normal PTH (parathyroid hormone) levels. Tubular reabsorption of phosphate was inappropriately low (86%). A knee X-ray confirmed rickets. Genetics for PHEX, ENPP1, DMP1 and SLC34A3 were negative. FGF 23 (fibroblast growth factor) levels 234 HRU/ mL (normal <100 HRU/mL) were raised along with a low 1,25(OH)2D3 (34 pmol/L). Tc99-octreotide scan, done for tumour localization was normal. Diagnosis A diagnosis of tumour induced osteomalacia was made based on marked muscle weakness with classical knee deformity, biochemistry, radiological features and negative genetics. Discussion Low phosphate level in this case, was initially attributed to Vitamin D deficiency. In addition as alkaline phosphatase and PTH levels were normal, rickets was missed, delaying diagnosis. X-linked hypophosphataemic rickets is the commonest cause of hypophosphataemic rickets. Negative genetics for hypophosphatemic rickets in this child raises the possibility of TIO. TIO is a paraneoplastic syndrome caused by tumours that secrete FGF 23. It is rare in children. Tumors may be difficult to locate, with a negative octreotide scan in 40% cases. Our patient has improved with alfacalcidol and phosphate supplements, but may benefit from the FGF23 antibody Burosumab. Learning points Muscle weakness is an unusual feature of hypophosphataemic rickets and should alert the clinician to this rare disorder.
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