title: Are patients' preferences for information and participation in medical decision-making being met? Interview study with lung cancer patients.
abstract: We examined the degree to which newly diagnosed patients with advanced lung cancer wanted to be informed and involved in medical decision-making, and whether the patients felt their preferences were met. Patients from 13 hospitals in Flanders were interviewed with a standard questionnaire. A total of 128 patients (68%) participated. Of the patients who wanted to be informed about life expectancy, half (53%) reported they were informed, and of those who wanted to be informed about palliative care and end-of-life decisions, 25% and 31% said they were informed, respectively. With regard to participation in medical decision-making (in general, about treatment, transfer or end-of-life), patients who preferred the doctor to make decisions or those who preferred to make the decision themselves often achieved this (in their perception), while patients who wanted an in-between position with some involvement, often did not. To conclude, preferences of patients with lung cancer for information concerning delicate topics and for shared decision-making with the physician were not well met.
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium. koen.pardon@vub.ac.be
authors.forename: Koen
authors.initials: K
authors.lastname: Pardon
authors.forename: Reginald
authors.initials: R
authors.lastname: Deschepper
authors.forename: Robert
authors.initials: R
authors.lastname: Vander Stichele
authors.forename: Jan
authors.initials: J
authors.lastname: Bernheim
authors.forename: Freddy
authors.initials: F
authors.lastname: Mortier
authors.forename: Denis
authors.initials: D
authors.lastname: Schallier
authors.forename: Paul
authors.initials: P
authors.lastname: Germonpré
authors.forename: Daniella
authors.initials: D
authors.lastname: Galdermans
authors.forename: Willem
authors.initials: W
authors.lastname: Van Kerckhoven
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
mesh_terms: D000368:Aged; D003657:Decision Making; D005260:Female; D006801:Humans; D033181:Information Dissemination; D007406:Interview, Psychological; D008175:Lung Neoplasms / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology; D013223:Statistics as Topic; D011795:Surveys and Questionnaires