Skip to main content
Erschienen in: Journal of Cancer Education 3/2018

10.10.2016

Understandability of Patient Information Booklets for Patients with Cancer

verfasst von: Christian Keinki, Richard Zowalla, Martin Wiesner, Marie Jolin Koester, Jutta Huebner

Erschienen in: Journal of Cancer Education | Ausgabe 3/2018

Einloggen, um Zugang zu erhalten

Abstract

The improvement of health literacy in general and the information of individual patient is a major concern of the German national cancer plan and similar initiatives in other western countries. The aim of our study was to assess the readability and understandability of information booklets for cancer patients available at German Web sites. A support vector machine (SVM) was used to discriminate between laymen- and expert-centric patient information booklets about nine most common tumor types. All booklets had to be available for free at the Internet. A total of 52 different patient booklets were downloaded and assessed. Overall, the assessment of all booklets showed that an understandability level L of 4.6 and therefore increased medical background knowledge is required to understand a random text selected from the sample. The assessed information booklets on cancer show very limited suitability for laymen. We were able to demonstrate that a medical background is necessary to understand the examined booklets. The current study highlights the need to create information material adjusted to the needs of laymen. Assessing understandability before publication, especially for laymen with low health literacy, could ensure the suitability and thus quality of the information material.
Literatur
1.
Zurück zum Zitat Hoefert H-W (2011) Wandel der Patientenrolle: neue Interaktionsformen im Gesundheitswesen [change of the patient role: new forms of interaction in healthcare]. Hogrefe, Göttingen Hoefert H-W (2011) Wandel der Patientenrolle: neue Interaktionsformen im Gesundheitswesen [change of the patient role: new forms of interaction in healthcare]. Hogrefe, Göttingen
3.
Zurück zum Zitat Bundesministerium für Gesundheit (2012) Nationaler Krebsplan - Handlungsfelder, Ziele und Umsetzungsempfehlungen [National Cancer Plan - fields of action, objectives and implementation of recommendations]. Druckerei im Bundesministerium für Arbeit und Soziales, Berlin Bundesministerium für Gesundheit (2012) Nationaler Krebsplan - Handlungsfelder, Ziele und Umsetzungsempfehlungen [National Cancer Plan - fields of action, objectives and implementation of recommendations]. Druckerei im Bundesministerium für Arbeit und Soziales, Berlin
5.
Zurück zum Zitat Böcken J, Braun B, Landmann J (2010) Gesundheitsmonitor 2010 - Bürgerorientierung im Gesundheitswesen [health monitor 2010 - focus on citizens healthcare]. Bertelsmann Stiftung, Gütersloh Böcken J, Braun B, Landmann J (2010) Gesundheitsmonitor 2010 - Bürgerorientierung im Gesundheitswesen [health monitor 2010 - focus on citizens healthcare]. Bertelsmann Stiftung, Gütersloh
6.
Zurück zum Zitat Garcia SF, Hahn EA, Jacobs EA (2010) Addressing low literacy and health literacy in clinical oncology practice. J Support Oncol 8:64–69PubMedPubMedCentral Garcia SF, Hahn EA, Jacobs EA (2010) Addressing low literacy and health literacy in clinical oncology practice. J Support Oncol 8:64–69PubMedPubMedCentral
8.
Zurück zum Zitat Keinki C, Seilacher E, Ebel M et al (2015) Information needs of cancer patients and perception of impact of the disease, of self-efficacy, and locus of control. J Cancer Educ Off J Am Assoc Cancer Educ. doi:10.1007/s13187-015-0860-x Keinki C, Seilacher E, Ebel M et al (2015) Information needs of cancer patients and perception of impact of the disease, of self-efficacy, and locus of control. J Cancer Educ Off J Am Assoc Cancer Educ. doi:10.​1007/​s13187-015-0860-x
9.
Zurück zum Zitat Huebner J, Micke O, Muecke R et al (2014) User rate of complementary and alternative medicine (CAM) of patients visiting a counseling facility for CAM of a German comprehensive cancer center. Anticancer Res 34:943–948PubMed Huebner J, Micke O, Muecke R et al (2014) User rate of complementary and alternative medicine (CAM) of patients visiting a counseling facility for CAM of a German comprehensive cancer center. Anticancer Res 34:943–948PubMed
10.
Zurück zum Zitat Friedman DB, Hoffman-Goetz L (2006) A systematic review of readability and comprehension instruments used for print and web-based cancer information. Health Educ Behav Off Publ Soc Public Health Educ 33:352–373. doi:10.1177/1090198105277329 CrossRef Friedman DB, Hoffman-Goetz L (2006) A systematic review of readability and comprehension instruments used for print and web-based cancer information. Health Educ Behav Off Publ Soc Public Health Educ 33:352–373. doi:10.​1177/​1090198105277329​ CrossRef
13.
Zurück zum Zitat Charnock D, Shepperd S, Needham G, Gann R (1999) DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health 53:105–111CrossRefPubMedPubMedCentral Charnock D, Shepperd S, Needham G, Gann R (1999) DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health 53:105–111CrossRefPubMedPubMedCentral
14.
Zurück zum Zitat Yan X, Song D, Li X (2006) Concept-based Document Readability in Domain Specific Information Retrieval. In: Proc. 15th ACM Int. Conf. Inf. Knowl. Manag. ACM, New York, NY, USA, pp 540–549 Yan X, Song D, Li X (2006) Concept-based Document Readability in Domain Specific Information Retrieval. In: Proc. 15th ACM Int. Conf. Inf. Knowl. Manag. ACM, New York, NY, USA, pp 540–549
15.
Zurück zum Zitat Ownby RL (2005) Influence of vocabulary and sentence complexity and passive voice on the readability of consumer-oriented mental health information on the Internet. AMIA Annu Symp Proc AMIA Symp AMIA Symp 585–589 Ownby RL (2005) Influence of vocabulary and sentence complexity and passive voice on the readability of consumer-oriented mental health information on the Internet. AMIA Annu Symp Proc AMIA Symp AMIA Symp 585–589
16.
Zurück zum Zitat Leroy G, Miller T, Rosemblat G, Browne A (2008) A balanced approach to health information evaluation: a vocabulary-based naïve Bayes classifier and readability formulas. J Am Soc Inf Sci Technol 59:1409–1419. doi:10.1002/asi.20837 CrossRef Leroy G, Miller T, Rosemblat G, Browne A (2008) A balanced approach to health information evaluation: a vocabulary-based naïve Bayes classifier and readability formulas. J Am Soc Inf Sci Technol 59:1409–1419. doi:10.​1002/​asi.​20837 CrossRef
17.
Zurück zum Zitat Schmidt H, Alilovic I, Klärs G (2011) Evaluation schriftlicher Gesundheitsinformationen zu Brustkrebs [Evaluation of written health information about breast cancer]. Gesundheitsinformationen Dtschl. Eine Übers. Zu Anforderungen Angeboten Herausforderungen Schmidt H, Alilovic I, Klärs G (2011) Evaluation schriftlicher Gesundheitsinformationen zu Brustkrebs [Evaluation of written health information about breast cancer]. Gesundheitsinformationen Dtschl. Eine Übers. Zu Anforderungen Angeboten Herausforderungen
18.
Zurück zum Zitat Robert Koch-Institut, die Gesellschaft der epidemiologischen Krebsregister in Deutschland e.V (2013) Krebs in Deutschland 2009/2010 [cancer in Germany 2009/2010]. Robert Koch-Institut, Berlin Robert Koch-Institut, die Gesellschaft der epidemiologischen Krebsregister in Deutschland e.V (2013) Krebs in Deutschland 2009/2010 [cancer in Germany 2009/2010]. Robert Koch-Institut, Berlin
19.
Zurück zum Zitat Liebl P, Seilacher E, Koester M-J et al (2015) What cancer patients find in the internet: the visibility of evidence-based patient information - analysis of information on German websites. Oncol Res Treat 38:212–218. doi:10.1159/000381739 CrossRefPubMed Liebl P, Seilacher E, Koester M-J et al (2015) What cancer patients find in the internet: the visibility of evidence-based patient information - analysis of information on German websites. Oncol Res Treat 38:212–218. doi:10.​1159/​000381739 CrossRefPubMed
23.
Zurück zum Zitat Zowalla R, Wiesner M, Pfeifer D (2014) Automatically assessing the expert degree of online health content using SVMs. Stud Health Technol Inform 202:48–51PubMed Zowalla R, Wiesner M, Pfeifer D (2014) Automatically assessing the expert degree of online health content using SVMs. Stud Health Technol Inform 202:48–51PubMed
24.
Zurück zum Zitat Joachims T (1998) Text categorization with support vector machines: learning with many relevant features. In: Nédellec C, Rouveirol C (eds) Mach. Learn. ECML-98. Springer Berlin, Heidelberg, pp. 137–142CrossRef Joachims T (1998) Text categorization with support vector machines: learning with many relevant features. In: Nédellec C, Rouveirol C (eds) Mach. Learn. ECML-98. Springer Berlin, Heidelberg, pp. 137–142CrossRef
26.
Zurück zum Zitat Yang Y, Pedersen JO (1997) A comparative study on feature selection in text categorization. In: Proc. Fourteenth Int. Conf. Mach. Learn. Morgan Kaufmann Publishers Inc., San Francisco, CA, USA, pp 412–420 Yang Y, Pedersen JO (1997) A comparative study on feature selection in text categorization. In: Proc. Fourteenth Int. Conf. Mach. Learn. Morgan Kaufmann Publishers Inc., San Francisco, CA, USA, pp 412–420
28.
Zurück zum Zitat Platt JC (1999) Probabilistic outputs for support vector machines and comparisons to regularized likelihood methods. Adv Large Margin Classif 10:61–74 Platt JC (1999) Probabilistic outputs for support vector machines and comparisons to regularized likelihood methods. Adv Large Margin Classif 10:61–74
32.
Zurück zum Zitat van Weert JCM, van Noort G, Bol N et al (2011) Tailored information for cancer patients on the internet: effects of visual cues and language complexity on information recall and satisfaction. Patient Educ Couns 84:368–378. doi:10.1016/j.pec.2011.04.006 CrossRefPubMed van Weert JCM, van Noort G, Bol N et al (2011) Tailored information for cancer patients on the internet: effects of visual cues and language complexity on information recall and satisfaction. Patient Educ Couns 84:368–378. doi:10.​1016/​j.​pec.​2011.​04.​006 CrossRefPubMed
33.
Zurück zum Zitat Knapp P, Gardner PH, Carrigan N et al (2009) Perceived risk of medicine side effects in users of a patient information website: a study of the use of verbal descriptors, percentages and natural frequencies. Br J Health Psychol 14:579–594. doi:10.1348/135910708X375344 CrossRefPubMed Knapp P, Gardner PH, Carrigan N et al (2009) Perceived risk of medicine side effects in users of a patient information website: a study of the use of verbal descriptors, percentages and natural frequencies. Br J Health Psychol 14:579–594. doi:10.​1348/​135910708X375344​ CrossRefPubMed
34.
Zurück zum Zitat Seidel DG, Münch I, Dreier M et al (2014) Sind Informationsmaterialien zur Darmkrebsfrüherkennung in Deutschland verständlich oder verfehlen sie ihre Wirkung? Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz 57:366–379. doi:10.1007/s00103-013-1908-x CrossRef Seidel DG, Münch I, Dreier M et al (2014) Sind Informationsmaterialien zur Darmkrebsfrüherkennung in Deutschland verständlich oder verfehlen sie ihre Wirkung? Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz 57:366–379. doi:10.​1007/​s00103-013-1908-x CrossRef
35.
Zurück zum Zitat Sheridan SL, Sutkowi-Hemstreet A, Barclay C et al (2016) A comparative effectiveness trial of alternate formats for presenting benefits and harms information for low-value screening services: a randomized clinical trial. JAMA Intern Med 176:31. doi:10.1001/jamainternmed.2015.7339 CrossRefPubMed Sheridan SL, Sutkowi-Hemstreet A, Barclay C et al (2016) A comparative effectiveness trial of alternate formats for presenting benefits and harms information for low-value screening services: a randomized clinical trial. JAMA Intern Med 176:31. doi:10.​1001/​jamainternmed.​2015.​7339 CrossRefPubMed
38.
Zurück zum Zitat Brundage M, Feldman-Stewart D, Leis A et al (2005) Communicating quality of life information to cancer patients: a study of six presentation formats. J Clin Oncol Off J Am Soc Clin Oncol 23:6949–6956. doi:10.1200/JCO.2005.12.514 CrossRef Brundage M, Feldman-Stewart D, Leis A et al (2005) Communicating quality of life information to cancer patients: a study of six presentation formats. J Clin Oncol Off J Am Soc Clin Oncol 23:6949–6956. doi:10.​1200/​JCO.​2005.​12.​514 CrossRef
39.
Zurück zum Zitat Lipkus IM, Hollands JG (1999) The visual communication of risk. J Natl Cancer Inst Monogr:149–163 Lipkus IM, Hollands JG (1999) The visual communication of risk. J Natl Cancer Inst Monogr:149–163
41.
Zurück zum Zitat Galesic M, Garcia-Retamero R, Gigerenzer G (2009) Using icon arrays to communicate medical risks: overcoming low numeracy. Health Psychol Off J Div Health Psychol Am Psychol Assoc 28:210–216. doi:10.1037/a0014474 Galesic M, Garcia-Retamero R, Gigerenzer G (2009) Using icon arrays to communicate medical risks: overcoming low numeracy. Health Psychol Off J Div Health Psychol Am Psychol Assoc 28:210–216. doi:10.​1037/​a0014474
42.
Zurück zum Zitat Gaissmaier W, Wegwarth O, Skopec D et al (2012) Numbers can be worth a thousand pictures: individual differences in understanding graphical and numerical representations of health-related information. Health Psychol Off J Div Health Psychol Am Psychol Assoc 31:286–296. doi:10.1037/a0024850 Gaissmaier W, Wegwarth O, Skopec D et al (2012) Numbers can be worth a thousand pictures: individual differences in understanding graphical and numerical representations of health-related information. Health Psychol Off J Div Health Psychol Am Psychol Assoc 31:286–296. doi:10.​1037/​a0024850
45.
Zurück zum Zitat Stacey D, Légaré F, Col NF, et al (2014) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev CD001431. doi:10.1002/14651858.CD001431.pub4 Stacey D, Légaré F, Col NF, et al (2014) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev CD001431. doi:10.1002/14651858.CD001431.pub4
47.
Zurück zum Zitat Nannenga MR, Montori VM, Weymiller AJ et al (2009) A treatment decision aid may increase patient trust in the diabetes specialist. the Statin choice randomized trial. Health Expect Int J Public Particip Health Care Health Policy 12:38–44. doi:10.1111/j.1369-7625.2008.00521.x Nannenga MR, Montori VM, Weymiller AJ et al (2009) A treatment decision aid may increase patient trust in the diabetes specialist. the Statin choice randomized trial. Health Expect Int J Public Particip Health Care Health Policy 12:38–44. doi:10.​1111/​j.​1369-7625.​2008.​00521.​x
49.
Zurück zum Zitat Thorne SE, Bultz BD, Baile WF, SCRN Communication Team (2005) Is there a cost to poor communication in cancer care?: a critical review of the literature. Psychooncology 14:875–884. doi:10.1002/pon.947 CrossRefPubMed Thorne SE, Bultz BD, Baile WF, SCRN Communication Team (2005) Is there a cost to poor communication in cancer care?: a critical review of the literature. Psychooncology 14:875–884. doi:10.​1002/​pon.​947 CrossRefPubMed
Metadaten
Titel
Understandability of Patient Information Booklets for Patients with Cancer
verfasst von
Christian Keinki
Richard Zowalla
Martin Wiesner
Marie Jolin Koester
Jutta Huebner
Publikationsdatum
10.10.2016
Verlag
Springer US
Erschienen in
Journal of Cancer Education / Ausgabe 3/2018
Print ISSN: 0885-8195
Elektronische ISSN: 1543-0154
DOI
https://doi.org/10.1007/s13187-016-1121-3

Weitere Artikel der Ausgabe 3/2018

Journal of Cancer Education 3/2018 Zur Ausgabe

Update Onkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.