P249 CF BOOST – engaging the disengaged

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Background In our large adult CF centre, we adhere to national guidelines on the management of cystic fibrosis (CF) but have noticed that even the best ‘standard CF care’ does not suit all patients. We have a cohort of patients that deteriorate rapidly despite receiving excellent advice from the CF MDT. These patients are typically non-adherent to medications and physiotherapy, have low BMIs, frequently exacerbate, rely on intravenous antibiotics and have accelerated lung function decline. Furthermore, these patients often have psychological difficulties and struggle to communicate optimally with the MDT. Objectives We aimed to develop an outpatient based service to provide intensive multidisciplinary support to these patients with key objectives being to improve: communication and engagement with the CF MDT; adherence; nutrition; lung function and to give enhanced psychosocial support. Methods The CF BOOST (Cystic Fibrosis Better Outpatient Outcome Support Team) service was developed consisting of 1 consultant, 2 specialist nurses, 2 physiotherapists, 1 dietician and the psychosocial team. Each enrolled patient receives intensive home support using a combination of phone calls, texts, emails and home visits. Weekly MDT meetings are held to discuss progress, problems and patient feedback and priorities. A summary of discussions and proposed individualised action plan is immediately discussed with the patient. Results 7 patients are now enrolled in the service. The first patient to enrol has now completed 12 months of CF BOOST support. This patient is now taking all oral medication and regular nebulised antibiotics for the first time in their life and has had a sustained 10% (absolute) increase in FEV1. BMI has risen from 16.2 to 21.8 (without enteral feeding or supplements), intravenous antibiotic days have halved, anaemia and hypoalbuminaemia have resolved and mean CRP is the lowest it has been in a decade. All 6 more recently enrolled patients are also showing favourable outcomes e.g. improved lung function, BMI, adherence and engagement and decreased intravenous antibiotic frequency. The use of text messaging has hugely improved all patients’ engagement and communication. Conclusions Using an alternative approach with rapidly deteriorating, non-adherent, disengaged patients can result in significant improvements in patient outcome and satisfaction.

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