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Towards optimised information about clinical trials; identification and validation of key issues in collaboration with cancer patient advocates.

Dellson, Pia LU ; Nilbert, Mef LU ; Bendahl, Pär-Ola LU ; Malmström, Per LU and Carlsson, Christina LU (2011) In European Journal of Cancer Care 20. p.445-454
Abstract
DELLSON P., NILBERT M., BENDAHL P-O., MALMSTROM P. & CARLSSON C. (2010) European Journal of Cancer Care Towards optimised information about clinical trials; identification and validation of key issues in collaboration with cancer patient advocates Clinical trials are crucial to improve cancer treatment but recruitment is difficult. Optimised patient information has been recognised as a key issue. In line with the increasing focus on patients' perspectives in health care, we aimed to study patients' opinions about the written information used in three clinical trials for breast cancer. Primary data collection was done in focus group interviews with breast cancer patient advocates. Content analysis identified three major themes:... (More)
DELLSON P., NILBERT M., BENDAHL P-O., MALMSTROM P. & CARLSSON C. (2010) European Journal of Cancer Care Towards optimised information about clinical trials; identification and validation of key issues in collaboration with cancer patient advocates Clinical trials are crucial to improve cancer treatment but recruitment is difficult. Optimised patient information has been recognised as a key issue. In line with the increasing focus on patients' perspectives in health care, we aimed to study patients' opinions about the written information used in three clinical trials for breast cancer. Primary data collection was done in focus group interviews with breast cancer patient advocates. Content analysis identified three major themes: comprehensibility, emotions and associations, and decision making. Based on the advocates' suggestions for improvements, 21 key issues were defined and validated through a questionnaire in an independent group of breast cancer patient advocates. Clear messages, emotionally neutral expressions, careful descriptions of side effects, clear comparisons between different treatment alternatives and information about the possibility to discontinue treatment were perceived as the most important issues. Patients' views of the information in clinical trials provide new insights and identify key issues to consider in optimising future written information and may improve recruitment to clinical cancer trials. (Less)
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type
Contribution to journal
publication status
published
subject
in
European Journal of Cancer Care
volume
20
pages
445 - 454
publisher
John Wiley & Sons Inc.
external identifiers
  • wos:000291399300004
  • pmid:20738392
  • scopus:79958270254
  • pmid:20738392
ISSN
1365-2354
DOI
10.1111/j.1365-2354.2010.01207.x
language
English
LU publication?
yes
id
f96b9400-17e5-4385-bf34-ae66538bd6e8 (old id 1665010)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/20738392?dopt=Abstract
date added to LUP
2016-04-04 07:18:21
date last changed
2021-05-05 05:17:12
@article{f96b9400-17e5-4385-bf34-ae66538bd6e8,
  abstract     = {DELLSON P., NILBERT M., BENDAHL P-O., MALMSTROM P. & CARLSSON C. (2010) European Journal of Cancer Care Towards optimised information about clinical trials; identification and validation of key issues in collaboration with cancer patient advocates Clinical trials are crucial to improve cancer treatment but recruitment is difficult. Optimised patient information has been recognised as a key issue. In line with the increasing focus on patients' perspectives in health care, we aimed to study patients' opinions about the written information used in three clinical trials for breast cancer. Primary data collection was done in focus group interviews with breast cancer patient advocates. Content analysis identified three major themes: comprehensibility, emotions and associations, and decision making. Based on the advocates' suggestions for improvements, 21 key issues were defined and validated through a questionnaire in an independent group of breast cancer patient advocates. Clear messages, emotionally neutral expressions, careful descriptions of side effects, clear comparisons between different treatment alternatives and information about the possibility to discontinue treatment were perceived as the most important issues. Patients' views of the information in clinical trials provide new insights and identify key issues to consider in optimising future written information and may improve recruitment to clinical cancer trials.},
  author       = {Dellson, Pia and Nilbert, Mef and Bendahl, Pär-Ola and Malmström, Per and Carlsson, Christina},
  issn         = {1365-2354},
  language     = {eng},
  pages        = {445--454},
  publisher    = {John Wiley & Sons Inc.},
  series       = {European Journal of Cancer Care},
  title        = {Towards optimised information about clinical trials; identification and validation of key issues in collaboration with cancer patient advocates.},
  url          = {http://dx.doi.org/10.1111/j.1365-2354.2010.01207.x},
  doi          = {10.1111/j.1365-2354.2010.01207.x},
  volume       = {20},
  year         = {2011},
}