Evidence-based patient information: The example of immunotherapy for patients with multiple sclerosis

被引:0
|
作者
Kasper, J. [1 ,2 ]
Heesen, C. [2 ]
Muehlhauser, I.
机构
[1] Univ Hamburg, Fak Math Informat Nat Wissensch, Inst Pharmazie Gesundheitswissensch, D-20146 Hamburg, Germany
[2] Univ Klinikum Hamburg Eppendorf, Hamburg, Germany
关键词
evidence-based medicine; critical health literacy; decision aid; multiple sclerosis; informed choice; immunotherapy; COMPLEX INTERVENTIONS; PREFERENCES; MANAGEMENT; KNOWLEDGE; RISKS; CARE;
D O I
10.1007/s00103-009-0751-6
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
The article elucidates consideration of scientific criteria for the development and design of evidence-based patient information (EBPI). Immunotherapy of multiple sclerosis serves as an example. Since in EBPI lack of evidence or ambiguities in available evidence are explicitly communicated, processing of EBPI does not necessarily lead to certainty about benefit and harms of medical interventions. However, only if the information is comprehensive in this respect can the EBPI be regarded as a robust basis for an informed choice. EBPI requires substantial developmental efforts. Regarding the growing number of medical interventions and the half-life of information, the question of responsibility for provision of EBPI is crucial. A vision is drafted in which EBPI is driven by demand of the patients and the public and is provided according to a costs-by-cause principle by those who distribute usual information hitherto. Trained patient advocates can appraise quality of information by use of instruments that consider criteria of EBPI. Critical health literacy should evolve early in school and can later on enhance usefulness of EBPI for people concerned with health issues.
引用
收藏
页码:77 / 85
页数:9
相关论文
共 50 条
  • [31] Quality of life and patient preferences: identification of subgroups of multiple sclerosis patients
    Rosato, Rosalba
    Testa, Silvia
    Oggero, Alessandra
    Molinengo, Giorgia
    Bertolotto, Antonio
    QUALITY OF LIFE RESEARCH, 2015, 24 (09) : 2173 - 2182
  • [33] Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study
    Etnel, Jonathan R. G.
    van Dijk, Arie P. J.
    Kluin, Jolanda
    Bertels, Robin A.
    Utens, Elisabeth M. W. J.
    van Galen, Eugene
    The, Regina
    Bogers, Ad J. J. C.
    Takkenberg, Johanna J. M.
    FRONTIERS IN CARDIOVASCULAR MEDICINE, 2017, 4
  • [34] Patient informed choice in the age of evidence-based medicine: IVF patients' approaches to biomedical evidence and fertility treatment add-ons
    Perrotta, Manuela
    Hamper, Josie
    SOCIOLOGY OF HEALTH & ILLNESS, 2023, 45 (02) : 225 - 241
  • [35] Patient information and coping styles in multiple sclerosis
    Lode, K.
    Larsen, J. P.
    Bru, E.
    Klevan, G.
    Myhr, K. M.
    Nyland, H.
    MULTIPLE SCLEROSIS JOURNAL, 2007, 13 (06) : 792 - 799
  • [36] Evidence-Based Patient Education: Knowledge Transfer to Endodontic Patients
    Sorrell, John T.
    McNeil, Daniel W.
    Gochenour, Lori L.
    Jackson, C. Russell
    JOURNAL OF DENTAL EDUCATION, 2009, 73 (11) : 1293 - 1305
  • [37] Alphabet soup: A personal, evolving, mostly evidence-based and logical, sequential approach to the "ABCNR" drugs in multiple sclerosis
    Mattson, DH
    SEMINARS IN NEUROLOGY, 2002, 22 (01) : 17 - 25
  • [38] Information sources in evidence-based medicine
    Oliván, JAS
    Ullate, JMA
    Ruiz, JF
    Avilés, RA
    PROFESIONAL DE LA INFORMACION, 2006, 15 (01): : 53 - +
  • [39] Information literacy and evidence-based medicine
    Evangelista, Rosana
    Fulgencio de Oliveira, Vanda de Fatima
    Pereira, Sandra Lucia
    Petinari, Valdinea Sonia
    TRANSINFORMACAO, 2008, 20 (01): : 73 - 81
  • [40] Cancer Immunotherapy An evidence-based overview and implications for practice
    Bayer, Virginia
    Amaya, Beau
    Baniewicz, Diane
    Callahan, Colleen
    Marsh, Lisa
    Mccoy, Asia S.
    CLINICAL JOURNAL OF ONCOLOGY NURSING, 2017, 21 (02) : 13 - 21