Pathway of Clinical Care in Neurofibromatosis Type 1
Neurofibromatosis type 1 (NF1) is a rare genetic condition that causes tumours to grow along nerves. The tumours are usually non-cancerous, but can cause severe complications, pain, and significantly impact quality of life. About half of those affected also experience learning and behavioural difficulties. Early diagnosis is key to appropriately monitor the condition, allowing timely screening and intervention. Although the NHS provides two excellent specialised Complex NF1 clinics, there is no standardised care pathway and limited non-specialised support.
Childhood Tumour Trust are keen to address the lack of ‘joined up care’. To start, we’re collaborating with a range of healthcare providers, patients and families to create two questionnaires. Our aim is to document diagnostic and clinical experiences from both patient and clinician perspectives. We can compare the results to existing guidelines and see where further education or resource is needed.