Patient Educ Couns. 2004 Aug;54(2):235-41.

Development of a questionnaire to evaluate the information needs of cancer patients: the EORTC questionnaire.

Arraras JI, Wright S, Greimel E, Holzner B, Kuljanic-Vlasic K, Velikova G, Eisemann M, Visser A; EORTC Quality of Life Group.

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Oncology Department, Hospital of Navarre, Irunlarrea 3, 31008, Pamplona, Spain. jiarraras@correo.cop.es

Abstract

Information disclosure is one of the key areas of support that patients may receive. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group has a group working on the development of a questionnaire that evaluates information received by cancer patients at different stages of their disease--EORTC QLQ-INFO30. This instrument is being developed by professionals from most European regions. The questionnaire aims to evaluate the information received by cancer patients on different areas of the disease, diagnosis, treatment and care. Besides, the instrument also assesses qualitative aspects of the information they have received. The present paper presents the first two phases of the module development process that include literature review, interviews with patients and professionals, and formulation of the items. All these steps have been carried out in different countries and have been approved by the EORTC QLG.

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