2646 Neurofibromatosis model of care project – development of a state-wide integrated value-based model of care for the neurofibromatoses
BackgroundThe Neurofibromatoses (NF) are a group of inherited conditions that predispose to nerve sheath tumours with multi-system involvement and complex care needs. A recent survey has revealed NF patients have difficulty accessing specialised multidisciplinary NF care resulting in concerns for su...
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| Published in: | BMJ neurology open Vol. 5; no. Suppl 1; p. A26 |
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| Main Authors: | , , , , , , , , , , |
| Format: | Journal Article |
| Language: | English |
| Published: |
London
BMJ Publishing Group Ltd
01-08-2023
BMJ Publishing Group LTD |
| Subjects: | |
| Online Access: | Get full text |
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| Summary: | BackgroundThe Neurofibromatoses (NF) are a group of inherited conditions that predispose to nerve sheath tumours with multi-system involvement and complex care needs. A recent survey has revealed NF patients have difficulty accessing specialised multidisciplinary NF care resulting in concerns for suboptimal patient management and health outcomes.ObjectivesThe paediatric and adult centralised NF services in NSW collaborated to design and implement an innovative model of care for patients with NF in NSW.MethodsA logic model was combined with a clinical redesign framework to guide the development and implementation of an innovative model of care via a mixed method multiphase design. An initial stakeholder workshop, stakeholder surveys (n=47) and interviews (n=21) were used to map out the current model of care, identify areas for improvement, and propose new solutions. A networked model of care was designed based on stakeholder feedback and implemented. A final stakeholder workshop (n=24) was held to assess stakeholder feedback on the new model and interventions to recognise areas for further development.ResultsThe interventions implemented included: nurse-led care, statewide NF virtual multidisciplinary meetings, joint paediatric-adult NF transition clinic, and NF outreach clinic. Resources developed to support these interventions were referral criteria for centralised NF services, referral pathways, GP and patient resources, centralised NF website, and transition care guidelines.ConclusionsA networked model of care was implemented to provide equitable access to comprehensive care for patients with NF. Measurement of outcomes are underway with clinical audits and patient surveys to evaluate effectiveness of these interventions. |
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| Bibliography: | ANZAN Annual Scientific Meeting 2023 Abstracts |
| ISSN: | 2632-6140 |
| DOI: | 10.1136/bmjno-2023-ANZAN.70 |