Introduction: Due to improved cancer survival rates, a rising number of CNS cancer survivors face late effects of therapy, such as hormone deficiencies. During adolesecence and young adulthood, specialised transition services are needed to cater for young peoples complex health needs and general needs, such as achieving independence. This study therefore audited a Teenage & Young Adult (TYA) neuro-oncology late effects clinic to identify areas of good practice and areas for improvement.
Methods: The TYA late effects clinic has been running since 2011 and 75 patients are included in the clinic database. The database contains information on known late effects, tumour type and treatment summaries. Patient outcomes were also examined using electronic patient records. A questionnaire was developed to gauge patients experience of transition and the clinic itself.
Results: 64% (n=48) patients attending the TYA clinic were at risk of endocrine late effects and underwent regular testing. The commonest tumour types were medulloblastomas and astrocytomas. 22 patients received radiotherapy alone, 22 had radio- and chemotherapy, while 4 only had surgery. Of the 44 patients who received radiotherapy, only 6 had complete therapy details including dose, fraction and duration of treatment. Information on previous chemotherapy was much more complete. The commonest hormone defect was growth hormone deficiency and males were more likely to develop hormone defects than females. Of the 48 patients in this audit, 19 remain under active TYA clinic follow up, 24 have moved on to adult care, 2 were transferred due to tumour recurrence and 3 were lost to follow up. Patient feedback was generally positive, other than that clinic often ran late.
Conclusion: The number lost to follow up is small. There are aspects of the patient experience that could be improved. This audit highlights the need for better oncology treatment summaries to guide endocrine assessment.