96 Value of an osteogenesis imperfecta clinical nurse specialist to families and external consultants in the UK

Objectives To ascertain if parents and consultants at secondary care level hospitals felt there were areas that the Clinical Nurse Specialists (CNS), working with children and families with Osteogenesis Imperfecta (OI) could improve upon within their service, and to gain feedback on the service provided. Methods A SurveyMonkey © questionnaire was created through the audit team at Great Ormond Street Hospital and the Paediatric Osteogenesis Imperfecta National Team (POINT) nursing break-out forum. These data were then compiled and collated into graphs and visual displays. Areas for improvement were fed back to individual services to consider how they may improve. Results 41 parents and 18 consultants completed questionnaires from 5 UK Hospitals, including the 4 designated Highly Specialised OI services in England. 85% of parents reported a CNS being present in their last OI appointment. 100% reported knowing how to contact the CNS. 82% agreed that The OI CNS role supports me managing my child’s OI. Areas to improve included: having more than 1 CNS, giving more information to schools and spending more time with the nurse at appointments. Additional comments included: Couldn’t be without our CNS; reassuring to have available; goes above and beyond. 89% of Consultants reported they were aware of a CNS in their regional OI centre. Contact reasons included: blood results, referral information, prenatal planning and medication queries. Benefits included: single point of contact, expert advice. 77% reported they agreed that The OI CNS is a good point of contact to assist me managing my OI patients. These data were exclusively linked to one centre reflecting a hub and spoke model of care, necessitated by the geographical location of patients. Conclusion Results showed that participants value the role of the CNS both as a point of contact and a source of specialist OI advice and support.