Research project
Title: A survey of breast cancer patients' views on entry into several clinical studies.
Project timescale: From 01 December, 2000 to 01 December, 2001
(Added to website on: 06 January, 2005 - Date last updated: 20 April, 2007)
Source of funding:
Departmental funding
Aims: This survey was undertaken to determine the acceptability of entry of an individual patient into more than one clinical study and to obtain patients' views and opinions about taking part in multiple studies. This was prompted by concerns expressed by some Local Research Ethics Committees about the acceptability of offering a number of research studies to an individual patient, and suggesting that this should be restricted.
Research designs used:
Study of views/experiences
Methods used to collect data:
Documentary analysis
Questionnaire survey
Research project description: Ninety six patients who had undergone surgery for invasive breast cancer between January and June 2000 in a single Breast Unit were sent a questionnaire seeking their views on study participation, including whether there should be limits to the number they might wish to be involved in. Questionnaires were sent out with an explanatory letter and a self addressed envelope for replies. Each questionnaire consisted of nine questions requiring yes/no answers but where appropriate there was opportunity for patients to write their own comments. An analysis of responses was undertaken.
Stages at which the public were involved:
Disseminating research
Prioritising topic areas
Planning the research
Managing the research
Designing the research instruments
(eg questionnaires, patient information sheets)
Writing about the research eg
publications, newsletters
Description of public involvement in research stages: The member of the public was involved throughout the project as a member of the steering committee.
Training and support provided for either members of the public or researchers involved in the project:
Examples of ways the public have made a difference to the research project: Provision of the patient's viewpoint throughout , by discussion, comment and general involvement.
Evaluating the impact of public involvement in the research:
Details of publications or reports resulting from the research: Paper: Burnet K, Benson J, Earl H, Thornton H, Cox K, Purushotham AD. A survey of breast cancer patients` views on entry into several clinical studies. European Journal of Cancer Care. 2004; 11:1:32-35 Abstract, 8th Nottingham International Breast Cancer Conference. Burnet K, Benson J, Earl H, Cox K, Purushotham A. A survey of patients` views on entry into multiple trials. European Journal of Cancer. September 2003; Vol. 1. No. 4. The Cambridge International Conference on Breast Cancer Screening. Robinson College, Cambridge. 6th- 8th September 2001. How many clinical trials should a patient participate in? Joint presentation: Hazel Thornton, Helena Earl.
Was/is your project user controlled: Not Known
For further information on the project, please contact:
Hazel Thornton
Involved consumer/researcher
Independent advocate
"Saionara"
31 Regent Street
Rowhedge
Colchester
CO5 7EA
hazelcagct@keme.co.uk
01206 728178
DISCLAIMER
Each entry has been written by the individual project and although care has been taken in compiling, checking and updating the information on this site INVOLVE and the National Institute for Health Research (NIHR) cannot guarantee its correctness and completeness. We do not accept responsibility for any loss, damage or expense resulting from the use of this information.
