Exploring the role of knowledge of condition and psycho-social profiles of young people with epilepsy during transition.

Transitioning from paediatric to adult care can be a particularly challenging time for young people with epilepsy and research has shown that there are a range of factors which may influence a young person's ability to successfully cope with this difficult time. The following study aimed to explore the psychosocial characteristics of this transitioning population, as well as investigate how knowledgeable the young person and their parent/carer are of their own condition throughout transition. Young people with epilepsy were recruited from two specialist epilepsy clinics in the North West and allocated to one of three groups; Group 1 pre-transition, Group 2 transitioning, and Group 3 post-transition. Results found that the young person's knowledge increased significantly throughout transition, whilst parent/carer's knowledge decreased. In addition, anxiety was found to be significantly lower in Group 2 (transitioning group) compared to Group 1 (pre-transition) and Group 3 (post-transition) and a number of significant gender differences were also identified across the groups. The study highlights the importance of considering all relevant psychosocial factors, such as anxiety, gender and the degree of knowledge the individual holds of their own condition during the transition process in order to develop psycho-educational programmes and transition pathways.

The ROAM/EORTC-1308 trial: Radiation versus Observation following surgical resection of Atypical Meningioma: study protocol for a randomised controlled trial.

BACKGROUND: Atypical meningiomas are an intermediate grade brain tumour with a recurrence rate of 39-58 %. It is not known whether early adjuvant radiotherapy reduces the risk of tumour recurrence and whether the potential side-effects are justified. An alternative management strategy is to perform active monitoring with magnetic resonance imaging (MRI) and to treat at recurrence. There are no randomised controlled trials comparing these two approaches. METHODS/DESIGN: A total of 190 patients will be recruited from neurosurgical/neuro-oncology centres across the United Kingdom, Ireland and mainland Europe. Adult patients undergoing gross total resection of intracranial atypical meningioma are eligible. Patients with multiple meningioma, optic nerve sheath meningioma, previous intracranial tumour, previous cranial radiotherapy and neurofibromatosis will be excluded. Informed consent will be obtained from patients. This is a two-stage trial (both stages will run in parallel): Stage 1 (qualitative study) is designed to maximise patient and clinician acceptability, thereby optimising recruitment and retention. Patients wishing to continue will proceed to randomisation. Stage 2 (randomisation) patients will be randomised to receive either early adjuvant radiotherapy for 6 weeks (60 Gy in 30 fractions) or active monitoring. The primary outcome measure is time to MRI evidence of tumour recurrence (progression-free survival (PFS)). Secondary outcome measures include assessing the toxicity of the radiotherapy, the quality of life, neurocognitive function, time to second line treatment, time to death (overall survival (OS)) and incremental cost per quality-adjusted life year (QALY) gained. DISCUSSION: ROAM/EORTC-1308 is the first multi-centre randomised controlled trial designed to determine whether early adjuvant radiotherapy reduces the risk of tumour recurrence following complete surgical resection of atypical meningioma. The results of this study will be used to inform current neurosurgery and neuro-oncology practice worldwide. TRIAL REGISTRATION: ISRCTN71502099 on 19 May 2014.