Searchable abstracts of presentations at key conferences on calcified tissues
Bone Abstracts (2019) 7 P211 | DOI: 10.1530/boneabs.7.P211

ICCBH2019 Poster Presentations (1) (226 abstracts)

Value of osteogenesis imperfecta clinical nurse specialists to families and consultants across five UK centres

Mark Heathfield 1, , Ian Tucker 2, , Jaskiran Sahota 3, , Lauren Rayner 4, & Gemma Greenacre 5,

1Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK; 2Bristol Children’s Hospital, Bristol, UK; 3Birmingham Women’s and Children’s Hospital, Birmingham, UK; 4Royal Manchester Children’s Hospital, Manchester, UK; 5Sheffield Children’s, Sheffield, UK; 6Paediatric Osteogenesis Imperfecta National Team (POINT), 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 current 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 as a service, and as a collective group in POINT.

Results: In total 46 parents and 25 consultants completed questionnaires from 5 UK Hospitals, including the 4 designated Highly Specialised OI services in England. 89% of parents reported a CNS being present in their last OI appointment. 100% reported knowing how to contact the CNS. 83% agreed that ‘The OI CNS role supports me to manage 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 hospital appointments. Additional comments included: ‘My CNS plays an important role in my daughter’s life’; ‘Couldn’t be without our CNS’; ‘Reassuring to have available’; ‘Goes above and beyond in the role’. 88% of external Consultants reported they were aware of a CNS in their regional OI centre. Reasons for contact included: blood results, referral information, prenatal planning and medication queries. The benefits listed included: single point of contact, expert advice. 77% reported they agreed that ‘The OI CNS is a good point of contact to assist me to manage my patients with Osteogenesis Imperfecta’. These data were exclusively linked to one centre reflecting a more hub and spoke model of care, partly necessitated by the geographical location of patients (London and the South East).

Conclusion: Results showed that parents and external consultants value the role of the CNS both as a point of contact and as a source of specialist OI advice and support.

Disclosure: The authors declared no competing interests.

Volume 7

9th International Conference on Children's Bone Health


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