1. Early Recognition of the Deteriorating Child with Complex Needs Rebecca Guy 4 th Year Medical Student

2. Introduction Early Warning Scores are a way of recognising how unwell patients are by looking at their physiological observations. (1) There is a group of children with complex neurological disabilities regularly admitted with infections that sometimes end up in the High Dependency Unity (HDU) or Paediatric Intensive Care Unit (PICU) Their baseline physiological parameters sit outside the normal range. (2) Can be either under or over sensitive on a PEWS chart Could we reduce incidents of deterioration and admission to HDU/PICU in these patients by creating individualised PEWS charts based on their own previous observations? Very little research previously done on the subject

3. Aims To see if using individualised PEWS values results in increase in specificity of scoring when compared to a standard age chart in children with complex disabilities regularly admitted with infection. If our results suggest that individualised PEWS scoring would be useful in our group of patients then we aim to create patient specific individualized PEWS charts for them

4. Methods We had five patients in our study, all of whom have a form of complex neurological disability and who over the past year have had more than one admission to the ward/HDU with infection. Data was gathered from the PEWS charts for their admissions and for their time in outpatient respite facilities and for each patient 4 sets of observation results were obtained; 24 hours after admission to hospital, 24 hours before deterioration in hospital, 24 hours before discharge and during times in respite facilities We then calculated: o Median values for their outpatient observations and compared to the standard age range o Individual 90 th and 99 th percentiles and then were able to see how these compared to the age appropriate chart o The percentage of times a score of 1 or 3 would be awarded using the individual percentiles compared to the standard age charts o How the sensitivity and specificity changed

5. Results Normal HR for age Median HR Normal RR for age Median RR Case 195-14010720-3023 Case 260-100962-1620 Case 360-100512-1621 Case 460-1001182-1628 Case 580-12012215-2022

7. Heart Rate SensitivitySpecificity Case 1Increased Case 2Increased Case 3Increased Case 4Unchanged Case 5DecreasedIncreased SensitivitySpecificity Case 1Increased Case 2Increased Case 3DecreasedIncreased Case 4 Decreased at 90 th percentile, Increased at 99 th percentile Increased Case 5Increased Respiratory Rate

8. Discussion Five out of five patients would benefit from individualised PEWS scores. Generally we found a significant difference between scoring using individualised percentiles compared to a standard age chart. Results are not false positives as they are based on actual clinical deterioration and normal values for each patient. Specificity was increased in all but 1 of the total observations. The sensitivity of both observations was more dependent on the individual patients. When sensitivity is increased the patient’s deterioration is picked up more quickly and when sensitivity is decreased there are less false triggers i.e. scores are not triggered when for example a higher respiratory rate is actually normal for the patient. In some cases there was a big difference using both the 90 th and 99 th percentiles and in others the difference was only really significant at the 99 th percentile (score of 3 awarded which prompts medical review.) As a patient group, four out five of them had higher median respiratory rates than the population and this can be explained by their neurological disability as they all have some degree of respiratory compromise. (2)

9. Increased or decreased scoring doesn’t necessarily correlate with the median being higher, lower or within the population range The range between the 90 th and 99 th percentile is smaller than the population range Therefore the sensitivity being increased is less to do with the median values but more that the narrower range is being accounted for Individualised scoring systems could be useful in other paediatric patients with chronic conditions as it would be able to more accurately detect how unwell they are.

10. Conclusion It would be very beneficial to create individualised PEWS charts for our group of children with complex disability who are admitted regularly with infection. We have found that using individualised 90 th and 99 th percentiles for scoring gives a more accurate representation of how unwell they are compared to a standard age chart as the specificity is increased. Generally the biggest difference is at the 99 th percentile which is when a score of three is awarded and medical review is triggered. Having individualised trigger points for parents to carry with them means that if the child becomes unwell and is admitted to hospital the parents feel that the child is able to be more accurately and objectively assessed and the appropriate amount of review (nursing or medical) can therefore be more accurately determined.

11. References (1) Roland D. Paediatric early warning scores: Holy Grail and Achilles’ heel. Arch Dis Child - Educ Pract Ed. 2012 Jul 3;edpract – 2011–300976. (2) Van Gestel JP, Robroch AH, Bollen CW, Van Der Ent CK, Van Vught AJ. Mechanical ventilation for respiratory failure in children with severe neurological impairment: is it futile medical treatment? Dev Med Child Neurol. 2010 May 1;52(5):483–8.