Over the years I have received many requests for copies of the BRIGHTLIGHT Survey from academics and healthcare professionals from the UK and also from other countries worldwide. We needed to complete our first wave of data collection before making it available. Now wave 1 has ended I have been looking for ways to make it available within the remit of the Intellectual Property agreement we have with our funder, the National Institute for Health Research (NIHR).
Details about the content of the Survey and how it was developed is available through the Health and Quality of Life Outcome website. The Survey is free to academics and non-commercial organisations, you will just need to register and complete a short application form to get approval to download it. The Survey is only available in UK English and is CAPI scripted so you will need to re-test it if translated into other languages or if it is going to be administered using a different method.
Coming shortly will also be the BRIGHTLIGHT Carers questionnaire, a paper self-completion questionnaire exploring carers unmet needs, and the health economic questionnaires we are using to record young people and their families out of pocket expenses. As each wave of data collection is complete we will also make these surveys available.
We are very much looking forward to looking at comparison of the experiences of the cohort to young people treated elsewhere.