Towards optimised information about clinical trials; identification and validation of key issues in collaboration with cancer patient advocates.
Eur J Cancer Care (Engl)
; 20(4): 445-54, 2011 Jul.
Article
in En
| MEDLINE
| ID: mdl-20738392
ABSTRACT
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.
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Breast Neoplasms
/
Patient Education as Topic
/
Clinical Trials as Topic
/
Informed Consent
Type of study:
Diagnostic_studies
/
Prognostic_studies
/
Qualitative_research
Limits:
Aged
/
Female
/
Humans
/
Middle aged
Language:
En
Journal:
Eur J Cancer Care (Engl)
Journal subject:
ENFERMAGEM
/
NEOPLASIAS
Year:
2011
Document type:
Article
Affiliation country:
Sweden