Peer-reviewed article

Junior Members Forum & RBHSC Annual Lecture : 22nd February 2019 Riddell Hall, Belfast

· 1 Sept 2020

Abstract

Background Cystic Fibrosis (CF) is a genetic condition affecting approximately 200 children and young people in Northern Ireland. A diagnosis of CF is life-changing for patients and their families. At diagnosis they are provided with a wealth of educational information. This can often be overwhelming at what is already a particularly challenging time. Consequently the CF team were keen to develop a resource which would enable patients and their families to access reliable educational information in their own time which would be of benefit both at the time of diagnosis and as they grew older. Methods We decided to create an app which could be downloaded and accessed free of charge. During the design process we consulted with medical professionals, CF specialist nurses, dieticians, physiotherapists, pharmacists, clinical psychologists and social workers in addition to patients and their families. Results We created an app containing information about the local adult and paediatric CF services and providing links to useful online resources in addition to material on physiotherapy, dietetics, medications, common infections, evolving research and the transition process. The app was made available to patients in 2018. To date it has been accessed over 3,200 times. Verbal feedback has been very positive. It costs approximately £75 per year to publish online and is updated regularly by members of the multidisciplinary team. Conclusions The app has already proved a useful resource for patients and their families. We are keen to continue to develop this resource by formally evaluating and adjusting the content accordingly. Background & Aims In the paediatric patient, weight is required to calculate drug dosages and fluid prescriptions. In some instances, an actual weight measurement is not possible or practical and an estimate must be made. This study aimed to compare the accuracy of weight estimation using the current versus previous APLS formulae in Northern Irish children. Methods The actual weight and age of patients was collected from patient records from children attending the RBHSC Paediatric Emergency Department in April 2016 (n=523). The estimated weight using current and previous APLS formulae was calculated for each subject and compared to actual weight using the mean residual sum of squares (RSS). A sub-analysis of age groups was conducted (1-11 months; 1-5 years; 6-12 years; 13+ years). Results The Mean RSS across all age groups was 46.75 for the current formulae versus 103.23 for the previous formula. The comparative Mean RSS (current:previous formulae) for specified age groups was as follows: (1-11 months 1.65:4.88 n=82; 1-5 years 10.29:10.29 n=231; 6-12 years 77.85:181.12 n=185 ; 13+ years 301.40:708.13 n=25). Conclusion The current APLS formula is overall more accurate than the previous APLS formula at estimating weight in children and across almost all age groups (note: the formulae for 1-5 year olds were equivalent). Weight estimates are less accurate in older children with both calculation methods.