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Abstract
Information is one of the main interventions given to cancer patients. Important research into information disclosure has been conducted and major advances have been made. We present the main theoretical models used to understand the information field and describe the current situation regarding the principal factors related to information: patients’ needs, coping strategies, illness representations, cross-cultural differences, the role of the family, and strategies to enhance information giving, such as professional training and patient-targeted interventions. We highlight the need to assess patients’ characteristics and desires through questionnaires and interviews and present the European Organisation for Research and Treatment of Cancer Quality of Life Group information questionnaire (EORTC QLQ-INFO 25). This instrument evaluates the level of information patients have received in different areas of their disease, treatment and care, and evaluates qualitative aspects. Finally, we describe the key areas of the information field and discuss how these areas could change in the future.
Acknowledgements
We thank Andrew Bottomley and Corneel Coens, from the EORTC Quality of Life Unit, Brussels; Fabio Efficace, from the Italian Group for Adult Hematologic Diseases (GIMEMA), Rome, Italy; Anne Brédart, from the Institut Curie, Paris, France; and Kristin Bjordal, from the Rikshospitalet-Radiumhospitalet Medical Center, Oslo, Norway, for their support in this study.
We would like to remember Dr Stephen Wright, who played an active role in this project.
Financial & competing interests disclosure
This study was supported by grants from the EORTC Quality of Life Group; the Departamento de Salud del Gobierno de Navarra and Caja de Ahorros de Navarra, Spain; the National Science Council, Taiwan (grant numbers 95-2314-B-002-266-MY2 and 97-2314-B-002-020-MY3); and Deutsche Krebshilfe, Bonn, Germany. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
No writing assistance was utilized in the production of this manuscript.