Abstract
Background The 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.
Objectives The paediatric and adult centralised NF services in NSW collaborated to design and implement an innovative model of care for patients with NF in NSW.
Methods A 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.
Results The 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.
Conclusions A 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.
