Abstract

There are validated measures of functioning for disabled children but no recognised scale of complexity. Many disabled children have multi-faceted needs. All need to be addressed to achieve best participation and quality of life. Aim:
To develop a scale of complexity that is easy to apply in a range of clinic settings, relevant to individual clinical care and service planning.
Method :
Data were analysed from a retrospective review of 8392 structured electronic clinic letters from 1999 children accessing the paediatric disability clinics in Sunderland, north-east England, June 2007-May 2012. The numbers of health conditions (C), technology dependencies (T), family-
reported issues (F) and need for round the clock care (R) were calculated and compared for those with different conditions.
Results :
The 699 children with intellectual disabilities (ID) compared to the 1299 without ID had significantly more:
Needs overall (mean 5.81, range 1-23 with ID; mean 2.22, range 0-19 without ID) Health conditions (mean 5.41, range 0-18 with ID; mean 2.40, range 0-12 without ID) Technology dependencies (mean 0.16, range 0-4 with ID; mean 0.03, range 0-2 without ID) Family reported issues (mean 0.53, range 0-5 with ID; mean 0.19; range 0-5 without ID) and
were Need for round the clock care (mean 0.18, range 0-1 with ID; mean 0.02, range 0-1 without ID)p-value <0.0001 in all cases. Children with ID plus cerebral palsies and epilepsies had more than double the number of needs
overall than those without. The group who died had the highest burden of needs overall (mean 15, p-value <0.05).
Conclusion:
A disability complexity scale has been proposed and field-tested. It is a practical way to quantify complexity in a way that identifies the resources required to care for individuals as well as to commission and design services for populations of disabled children and young people.