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01-04-2020 | Sarcoma

Importance of and Satisfaction with Information about Their Disease in Cancer Patients

Authors: Hannah Eisfeld, Fabienne Bauer, Clara Dubois, Thorsten Schmidt, Karin Kastrati, Andreas Hochhaus, Jutta Hübner

Published in: Journal of Cancer Education | Issue 2/2020

Abstract

To learn more about information needs and satisfaction with provided information among cancer patients and whether dissatisfaction with information has any association with how therapy decisions are made. An online survey was conducted during March 2015 and January 2016 by the German non-profit patient organization “Das Lebenshaus e.V.” among their members with rare solid tumors. A total of 338 records was analyzed. The majority found information on their disease important and was satisfied with the provided information. The participants were less satisfied with the information concerning management of side effects than with other aspects of information (p < .001). Support groups, lectures, and the oncologist were rated as the most helpful sources of information followed by a second opinion and media. Participants who were dissatisfied with the information more often made the decision on the treatment alone by themselves (p < .001). Our results show a high satisfaction with disease-related information among our study participants. Improvements could be made by offering more information on the management of side effects and by giving more information about support groups, reliable websites, and other helpful media.

Husson O, Mols F, van de Poll-Franse LV (2011) The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Ann Oncol 22:761–772. https://doi.org/10.1093/annonc/mdq413 CrossRefPubMed

Beekers N, Husson O, Mols F, van Eenbergen M, van de Poll-Franse LV (2015) Symptoms of anxiety and depression are associated with satisfaction with information provision and internet use among 3080 cancer survivors: results of the PROFILES registry. Cancer Nurs 38:335–342. https://doi.org/10.1097/NCC.0000000000000184 CrossRefPubMed

Mesters I, van den Borne B, De Boer M, Pruyn J (2001) Measuring information needs among cancer patients. Patient Educ Couns 43:253–262CrossRef

Ebel M-D, Stellamanns J, Keinki C, Rudolph I, Huebner J (2017) Cancer patients and the internet: a survey among German cancer patients. J Cancer Educ 32:503–508. https://doi.org/10.1007/s13187-015-0945-6 CrossRefPubMed

Kowalski C, Kahana E, Kuhr K, Ansmann L, Pfaff H (2014) Changes over time in the utilization of disease-related Internet information in newly diagnosed breast cancer patients 2007 to 2013. J Med Internet Res 16:e195. https://doi.org/10.2196/jmir.3289 CrossRefPubMedPubMedCentral

Keinki C, Seilacher E, Ebel M, Ruetters D, Kessler I, Stellamanns J, Rudolph I, Huebner J (2016) Information needs of cancer patients and perception of impact of the disease, of self-efficacy, and locus of control. J Cancer Educ 31:610–616. https://doi.org/10.1007/s13187-015-0860-x CrossRefPubMed

James N, Daniels H, Rahman R, McConkey C, Derry J, Young A (2007) A study of information seeking by cancer patients and their carers. Clin Oncol (R Coll Radiol) 19:356–362. https://doi.org/10.1016/j.clon.2007.02.005 CrossRef

Pieper D, Jülich F, Antoine S-L, Bächle C, Chernyak N, Genz J, Eikermann M, Icks A (2015) Studies analysing the need for health-related information in Germany - a systematic review. BMC Health Serv Res 15(407):407. https://doi.org/10.1186/s12913-015-1076-9 CrossRefPubMedPubMedCentral

Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MHN (2007) A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manag 34:81–93. https://doi.org/10.1016/j.jpainsymman.2006.09.035 CrossRef

10.

Galesic M, Garcia-Retamero R (2011) Do low-numeracy people avoid shared decision making? Health Psychol 30:336–341. https://doi.org/10.1037/a0022723 CrossRefPubMed

11.

Nicolai J, Buchholz A, Seefried N, Reuter K, Härter M, Eich W, Bieber C (2016) When do cancer patients regret their treatment decision? A path analysis of the influence of clinicians’ communication styles and the match of decision-making styles on decision regret. Patient Educ Couns 99:739–746. https://doi.org/10.1016/j.pec.2015.11.019 CrossRefPubMed

12.

Kashaf MS, McGill E (2015) Does shared decision making in cancer treatment improve quality of life? A systematic literature review. Med Decis Mak 35:1037–1048. https://doi.org/10.1177/0272989X15598529 CrossRef

13.

Rudolph I, Seilacher E, Köster M-J, Stellamanns J, Liebl P, Zell J, Ludwig S, Beck V, Hübner J (2015) Survey on information needs of cancer patients and their relatives in Germany. Dtsch Med Wochenschr 140:e43–e47. https://doi.org/10.1055/s-0041-100585 CrossRefPubMed

14.

Rammstedt B, Kemper CJ, Klein MC, et al (2017) A Short Scale for Assessing the Big Five Dimensions of Personality: 10 Item Big Five Inventory (BFI-10). methods, data, analyses, Vol 7, No 2 (2013). https://doi.org/10.12758/mda.2013.013

15.

Blanchard CG, Labrecque MS, Ruckdeschel JC, Blanchard EB (1988) Information and decision-making preferences of hospitalized adult cancer patients. Soc Sci Med 27:1139–1145CrossRef

16.

Güleser GN, Taşci S, Kaplan B (2012) The experience of symptoms and information needs of cancer patients undergoing radiotherapy. J Cancer Educ 27:46–53. https://doi.org/10.1007/s13187-011-0254-7 CrossRefPubMed

17.

Oerlemans S, Husson O, Mols F, Poortmans P, Roerdink H, Daniels LA, Creutzberg CL, van de Poll-Franse LV (2012) Perceived information provision and satisfaction among lymphoma and multiple myeloma survivors--results from a Dutch population-based study. Ann Hematol 91:1587–1595. https://doi.org/10.1007/s00277-012-1495-1 CrossRefPubMedPubMedCentral

18.

Jenkins V, Fallowfield L, Saul J (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84:48–51. https://doi.org/10.1054/bjoc.2000.1573 CrossRefPubMedPubMedCentral

19.

Llewellyn CD, McGurk M, Weinman J (2006) How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP). Oral Oncol 42:726–734. https://doi.org/10.1016/j.oraloncology.2005.11.013 CrossRefPubMed

20.

Rietveld MJA, Husson O, Vos MCC, van de Poll-Franse LV, Ottevanger PBN, Ezendam NPM (2018) Association between information provision and supportive care needs among ovarian cancer survivors: a cross-sectional study from the PROFILES registry. Psychooncology 27:1922–1929. https://doi.org/10.1002/pon.4742 CrossRefPubMed

21.

Binkley JM, Harris SR, Levangie PK, Pearl M, Guglielmino J, Kraus V, Rowden D (2012) Patient perspectives on breast cancer treatment side effects and the prospective surveillance model for physical rehabilitation for women with breast cancer. Cancer 118:2207–2216. https://doi.org/10.1002/cncr.27469 CrossRefPubMed

22.

Lee YM, Francis K, Walker J, Lee SM (2004) What are the information needs of Chinese breast cancer patients receiving chemotherapy? Eur J Oncol Nurs 8:224–233. https://doi.org/10.1016/j.ejon.2003.12.006 CrossRefPubMed

23.

Jung B, Stoll C, Feick G, Prott FJ, Zell J, Rudolph I, Huebner J (2016) Prostate cancer patients’ report on communication about endocrine therapy and its association with adherence. J Cancer Res Clin Oncol 142:465–470. https://doi.org/10.1007/s00432-015-2059-2 CrossRefPubMed

24.

Wuensch P, Hahne A, Haidinger R, Meißler K, Tenter B, Stoll C, Senf B, Huebner J (2015) Discontinuation and non-adherence to endocrine therapy in breast cancer patients: is lack of communication the decisive factor? J Cancer Res Clin Oncol 141:55–60. https://doi.org/10.1007/s00432-014-1779-z CrossRefPubMed

25.

Fuchs T, Hanaya H, Seilacher E, Koester MJ, Keinki C, Liebl P, Huebner J (2017) Information deficits and second opinion seeking - a survey on cancer patients. Cancer Investig 35:62–69. https://doi.org/10.1080/07357907.2016.1242012 CrossRef

26.

Kim AR, Park H-A (2015) Web-based self-management support interventions for cancer survivors: a systematic review and meta-analyses. Stud Health Technol Inform 216:142–147PubMed

27.

Nagler RH, Gray SW, Romantan A, Kelly BJ, DeMichele A, Armstrong K, Schwartz JS, Hornik RC (2010) Differences in information seeking among breast, prostate, and colorectal cancer patients: results from a population-based survey. Patient Educ Couns 81 Suppl:S54–S62. https://doi.org/10.1016/j.pec.2010.09.010 CrossRef

28.

Nayir E, Tanriverdi O, Karakas Y et al (2016) Tendency of cancer patients and their relatives to use internet for health-related searches: Turkish Oncology Group (TOG) study. J BUON 21:714–719PubMed

29.

Lee SY, Hawkins R (2010) Why do patients seek an alternative channel? The effects of unmet needs on patients’ health-related Internet use. J Health Commun 15:152–166. https://doi.org/10.1080/10810730903528033 CrossRefPubMed

30.

Tustin N (2010) The role of patient satisfaction in online health information seeking. J Health Commun 15:3–17. https://doi.org/10.1080/10810730903465491 CrossRefPubMed

31.

Liebl P, Seilacher E, Koester M-J, Stellamanns J, Zell J, Hübner J (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. https://doi.org/10.1159/000381739 CrossRefPubMed

32.

Campbell HS, Phaneuf MR, Deane K (2004) Cancer peer support programs-do they work? Patient Educ Couns 55:3–15. https://doi.org/10.1016/j.pec.2003.10.001 CrossRefPubMed

33.

Hübner J, Münstedt K, Micke O, Senf B (2013) Information on complementary and alternative medicine at homepages of German cancer self-help. Dtsch Med Wochenschr 138:17–22. https://doi.org/10.1055/s-0032-1327374 CrossRefPubMed

34.

Lang V, Walter S, Fessler J, Koester MJ, Ruetters D, Huebner J (2017) The role of the general practitioner in cancer care: a survey of the patients’ perspective. J Cancer Res Clin Oncol 143:895–904. https://doi.org/10.1007/s00432-017-2343-4 CrossRefPubMed

35.

Rutten LJF, Arora NK, Bakos AD, Aziz N, Rowland J (2005) Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns 57:250–261. https://doi.org/10.1016/j.pec.2004.06.006 CrossRefPubMed

36.

Finney Rutten LJ, Agunwamba AA, Wilson P, Chawla N, Vieux S, Blanch-Hartigan D, Arora NK, Blake K, Hesse BW (2016) Cancer-related information seeking among cancer survivors: trends over a decade (2003-2013). J Cancer Educ 31:348–357. https://doi.org/10.1007/s13187-015-0802-7 CrossRefPubMed

37.

Matsuyama RK, Wilson-Genderson M, Kuhn L, Moghanaki D, Vachhani H, Paasche-Orlow M (2011) Education level, not health literacy, associated with information needs for patients with cancer. Patient Educ Couns 85:e229–e236. https://doi.org/10.1016/j.pec.2011.03.022 CrossRefPubMed

38.

Beckjord EB, Arora NK, McLaughlin W, Oakley-Girvan I, Hamilton AS, Hesse BW (2008) Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. J Cancer Surviv 2:179–189. https://doi.org/10.1007/s11764-008-0055-0 CrossRefPubMed

39.

Brown R, Butow P, Wilson-Genderson M, Bernhard J, Ribi K, Juraskova I (2012) Meeting the decision-making preferences of patients with breast cancer in oncology consultations: impact on decision-related outcomes. J Clin Oncol 30:857–862. https://doi.org/10.1200/JCO.2011.37.7952 CrossRefPubMed

40.

Efficace F, Gaidano G, Sprangers M, Cottone F, Breccia M, Voso MT, Caocci G, Stauder R, di Tucci AA, Sanpaolo G, Selleslag D, Angelucci E, Platzbecker U, Mandelli F (2014) Preference for involvement in treatment decisions and request for prognostic information in newly diagnosed patients with higher-risk myelodysplastic syndromes. Ann Oncol 25:447–454. https://doi.org/10.1093/annonc/mdt557 CrossRefPubMed

41.

Kehl KL, Landrum MB, Arora NK, Ganz PA, van Ryn M, Mack JW, Keating NL (2015) Association of actual and preferred decision roles with patient-reported quality of care: shared decision making in cancer care. JAMA Oncol 1:50–58. https://doi.org/10.1001/jamaoncol.2014.112 CrossRefPubMedPubMedCentral

42.

Gaston CM, Mitchell G (2005) Information giving and decision-making in patients with advanced cancer: a systematic review. Soc Sci Med 61:2252–2264. https://doi.org/10.1016/j.socscimed.2005.04.015 CrossRefPubMed

Title: Importance of and Satisfaction with Information about Their Disease in Cancer Patients
Authors: Hannah Eisfeld
Fabienne Bauer
Clara Dubois
Thorsten Schmidt
Karin Kastrati
Andreas Hochhaus
Jutta Hübner
Publication date: 01-04-2020
Publisher: Springer US
Keywords: Sarcoma
Gastrointestinal Stromal Tumor
Published in: Journal of Cancer Education / Issue 2/2020
Print ISSN: 0885-8195
Electronic ISSN: 1543-0154
DOI: https://doi.org/10.1007/s13187-019-1480-7

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