Hereditary Cancer Predisposition Syndrome: EORTC QLQ-HCPS
Research type
Research Study
Full title
Development of an EORTC questionnaire for individuals at risk for an Hereditary Cancer Predispositon Syndrome: the EORTC QLQ-HCPS
IRAS ID
217228
Contact name
Andrew Nordin
Contact email
Sponsor organisation
East Kent Hospitals University NHS Foundation Trust
Duration of Study in the UK
0 years, 3 months, 28 days
Research summary
The purpose of this study is to develop a multi-lingual questionnaire to assess the impact of testing for genetic predisposition to cancer for individuals from high-risk families and individuals with a cancer diagnosis. The EORTC Quality of Life Group is an international group of researchers who develop questionnaires to assess various facets of QoL for use in cancer clinical trials and in clinical cancer care.This study will follow the established EORTC module development protocol involving 4 phases. In phase 1 a detailed literature review is performed to search for existing questionnaires and relevant research on this topic, and a list of potentially relevant issues is explored through detailed interviews with patients and healthcare providers. In phase 2 a list of potential items (questions) is generated on the basis of the phase 1 interviews and a provisional questionnaire is produced for preliminary testing in phase 3. Phase 4 involves a full validation study of the questionnaire. The work is undertaken by collaborators concurrently in a number of European and International centres. The Chief Investigator co-ordinating this project for the EORTC QoL Group is based in Innsbruck in Austria, and the applicant is an active collaborator in this Group. This application requests approval for Phase 1 and 2 within four UK centres, all of which are active members of the EORTC QoL Group.
REC name
London - Surrey Borders Research Ethics Committee
REC reference
17/LO/1006
Date of REC Opinion
27 Jun 2017
REC opinion
Favourable Opinion