title: Perceived need for information among patients with a haematological malignancy: associations with information satisfaction and treatment decision-making preferences.
abstract: For patients with haematological malignancies, information on disease, prognosis, treatment and impact on quality of life is of the utmost importance. To gain insight into the perceived need for information in relation to sociodemographic and clinical parameters, comorbidity, quality of life (QoL) and information satisfaction, we compiled a questionnaire based on existing validated questionnaires. A total of 458 patients diagnosed with a haematological malignancy participated. The perceived need for information was moderate to high (40-70%). Multivariate regression analyses showed that a higher need for information was related to younger age, worse QoL, being member of a patient society and moderate comorbidity. The need for disease and treatment-related information was higher than the need for psychosocial information. A higher need for disease and treatment-related information was associated to being diagnosed with multiple myeloma. A higher need for psychosocial information was related to a lower educational level. The information provision could be improved according to 41% of the patients. Higher satisfaction with provided information was associated with better QoL. Most patients (62%) reported that they wanted to be fully informed about their illness and actively involved in treatment decision-making. The results contribute to improving patient-tailored information provision and shared decision-making in clinical practice.
authors.affiliation: Department of Haematology, VU University Medical Center, Amsterdam, The Netherlands.|Department of Internal Medicine, Medical Center Alkmaar, Alkmaar, The Netherlands.
authors.forename: Janneke A J
authors.initials: JA
authors.lastname: Rood
authors.affiliation: Department of Clinical Psychology, University of Amsterdam, The Netherlands.
authors.forename: Florence J
authors.initials: FJ
authors.lastname: van Zuuren
authors.affiliation: Department of Internal Medicine, Medical Center Alkmaar, Alkmaar, The Netherlands.
authors.forename: Frank
authors.initials: F
authors.lastname: Stam
authors.affiliation: Department of Statistics, Medical Center Alkmaar, The Netherlands.
authors.forename: Tjeerd
authors.initials: T
authors.lastname: van der Ploeg
authors.affiliation: Department of Haematology, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Corien
authors.initials: C
authors.lastname: Eeltink
authors.affiliation: Department of Clinical Psychology, VU University, Amsterdam, The Netherlands.
authors.forename: Irma M
authors.initials: IM
authors.lastname: Verdonck-de Leeuw
authors.affiliation: Department of Haematology, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Peter C
authors.initials: PC
authors.lastname: Huijgens
mesh_terms: D000367:Age Factors; D000368:Aged; D001294:Attitude to Health; D015897:Comorbidity; D003657:Decision Making; D004522:Educational Status; D005260:Female; D057220:Health Literacy; D006301:Health Services Needs and Demand; D019337:Hematologic Neoplasms / Q000523:psychology* / Q000628:therapy; D006801:Humans; D057226:Information Seeking Behavior; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010358:Patient Participation / Q000523:psychology*; D017060:Patient Satisfaction; D011369:Professional-Patient Relations; D011584:Psychology; D011788:Quality of Life; D012657:Self-Help Groups; D011795:Surveys and Questionnaires
keywords: haemato-oncology; information needs; leukaemia; lymphoma; multiple myeloma; quality of life