Quality of life for childhood/TYA survivors of of medulloblastoma v1.0
Research type
Research Study
Full title
Assessment of Quality of Life in paediatric, teenage and young adult patients treated for medulloblastoma
IRAS ID
147696
Contact name
Henry C Mandeville
Contact email
Sponsor organisation
Royal Marsden NHS Foundation Trust
Research summary
Medulloblastoma and its treatments can leave survivors with debilitating, chronic medical conditions that impair quality of life. Radiation therapy in the paediatric population can be associated with both long and short-term side-effects.
In England proton therapy abroad is currently funded by the NHS for patients under the age of 16, with specific cancers. Due to urgency of treatment for medulloblastoma patients it has been decided that it would be unsafe to send this group abroad for proton therapy. This provides us with an opportunity to compare treatment outcomes, using a standardised measure, for paediatric medulloblastoma patients treated in London with those treated at Massachussetts General in the US.Children (or their parents for younger participants) will be asked to complete the PedsQL Core & Cancer Module questionnaires once only. Eligible patients are those who have received treatment for medulloblastoma more than 3 months previously and who are aged between 1 and 25 years. Those patients who are receiving palliative care will be excluded as will those not willing or able to give fully informed consent to participate.
Any other information will be collected from the medical notes and will include: age at treatment, presentation history, tumour status, neurological status, socio-economic status and treatment details. The research will only include those patients treated at the Royal Marsden NHS Trust.REC name
South Central - Berkshire B Research Ethics Committee
REC reference
14/SC/1096
Date of REC Opinion
28 Jul 2014
REC opinion
Further Information Favourable Opinion