Supportive Care in Cancer

, Volume 24, Issue 2, pp 563–571 | Cite as

After initial treatment for primary breast cancer: information needs, health literacy, and the role of health care workers

  • Anna Schmidt
  • Nicole Ernstmann
  • Simone Wesselmann
  • Holger Pfaff
  • Markus Wirtz
  • Christoph Kowalski
Original Article

Abstract

Purpose

After a short hospital stay of just some days follows long-term outpatient care for breast cancer patients. The aim of the study is to describe the information needs of breast cancer outpatients and to get in touch with aspects of health literacy, as well as contact various health care workers.

Methods

In a multicenter study, patients were asked about their information needs 10 weeks after surgery. The analysis on hand includes data about 1248 female patients. In addition to descriptive analyses identifying the most prevalent information needs, logistic regression analyses were calculated to identify factors associated with these.

Results

The results show that information needs of breast cancer outpatients are mainly in “follow-up after acute treatment”, “coping with long-term side effects”, and “heredity of breast cancer”. In addition to sociodemographic patient characteristics, perceived helpful contacts with various health care workers as well as a satisfactory patient’s level of health literacy reduced the probability of unmet information needs.

Conclusions

Breast cancer outpatients have numerous information needs. In addition to provide information at the right time regarding a specific disease phase, it is important that health professionals’ support affected breast cancer patients in coping with the new situation.

Keywords

Information needs Breast cancer outpatient Health literacy Health care workers 

References

  1. 1.
    World Health Organization (2014) Early detection of common cancers. Breast cancer. http://www.euro.who.int/en/what-we-do/health-topics/noncommunicable-diseases/cancer/news/news/2012/2/early-detection-of-common-cancers/breast-cancer. Accessed 19 Aug 2014
  2. 2.
    Zentrum für Krebsregisterdaten (2013) Brustkrebs (Mammakarzinom). ICD-10 C50. http://www.krebsdaten.de/Krebs/DE/Content/Krebsarten/Brustkrebs/brustkrebs_node.html. Accessed 15 Aug 2014
  3. 3.
    Eisemann N, Waldmann A, Katalinic A (2013) Epidemiology of breast cancer—current figures and trends. Geburtshilfe Frauenheilkd 73(2):130–135. doi:10.1055/s-0032-1328075 PubMedPubMedCentralCrossRefGoogle Scholar
  4. 4.
    Gesundheitsberichterstattung des Bundes (2014) Diagnosedaten der Krankenhäuser ab 2000 (Eckdaten der vollstationären Patienten und Patientinnen). Gliederungsmerkmale: Jahre, Behandlungs−/Wohnort, ICD10. http://www.gbe-bund.de/oowa921-install/servlet/oowa/aw92/dboowasys921.xwdevkit/xwd_init?gbe.isgbetol/xs_start_neu/&p_aid=3&p_aid=18446218&nummer=550&p_sprache=D&p_indsp=-55017&p_aid=29209192. Accessed 30 Jul 2014
  5. 5.
    Dawe DE, Bennett LR, Kearney A, et al. (2014) Emotional and informational needs of women experiencing outpatient surgery for breast cancer. Can Oncol Nurs J 24(1):20–30PubMedCrossRefGoogle Scholar
  6. 6.
    Droog E, Armstrong C, MacCurtain S (2014) Supporting patients during their breast cancer journey: the informational role of clinical nurse specialists. Cancer Nurs 37(6):429–435. doi:10.1097/NCC.0000000000000109 PubMedCrossRefGoogle Scholar
  7. 7.
    Namkoong K, Shah DV, Han JY, et al. (2010) Expression and reception of treatment information in breast cancer support groups: how health self-efficacy moderates effects on emotional well-being. Patient Educ Couns 81(Supplement 1(0)):S41. doi:10.1016/j.pec.2010.09.009 PubMedCrossRefGoogle Scholar
  8. 8.
    Morrison V, Henderson BJ, Zinovieff F, et al. (2012) Common, important, and unmet needs of cancer outpatients. Eur J Oncol Nurs 16(2):115–123. doi:10.1016/j.ejon.2011.04.004 PubMedCrossRefGoogle Scholar
  9. 9.
    Eheman C, Berkowitz Z, Lee JW, et al. (2009) Information-seeking styles among cancer patients before and after treatment by demographics and use of information sources. J Health Commun 14(5):487–502. doi:10.1080/10810730903032945 PubMedPubMedCentralCrossRefGoogle Scholar
  10. 10.
    Kreienberg R, Albert U, Follmann M et al. (2012) Interdisziplinäre S3-Leitlinie für die Diagnostik, Therapie und Nachsorge des Mammakarzinoms. Leitlinienprogramm Onkologie. AWMF-Register-Nummer: 032 - 045OL, 3.0th edn. BerlinGoogle Scholar
  11. 11.
    Squiers L, Finney Rutten LJ, Treiman K, et al. (2005) Cancer patients’ information needs across the cancer care continuum: evidence from the cancer information service. J Health Commun 10(Suppl 1):15–34PubMedCrossRefGoogle Scholar
  12. 12.
    Beaver K, Tysver-Robinson D, Campbell, M et al. (2009) Comparing hospital and telephone follow-up after treatment for breast cancer: randomised equivalence trial. BMJ 338:a3147Google Scholar
  13. 13.
    Sørensen K, Van den Broucke S, Fullam J, et al. (2012) Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health 12(80). doi:10.1186/1471-2458-12-80
  14. 14.
    Agency for Healthcare Research and Quality (2011) Health literacy interventions and outcomes: an updated systematic review: executive summary. http://www.ahrq.gov/research/findings/evidence-based-reports/litupsum.html. Accessed 17 Feb 2015
  15. 15.
    Chew LD, Bradley KA, Boyko EJ (2004) Brief questions to identify patients with inadequate health literacy. Fam Med 36(8):588–594PubMedGoogle Scholar
  16. 16.
    Sentell T, Baker KK, Onaka A, et al. (2011) Low health literacy and poor health status in Asian Americans and Pacific Islanders in Hawai’i. J Health Commun 16(Suppl. 3):279–294. doi:10.1080/10810730.2011.604390 PubMedCrossRefGoogle Scholar
  17. 17.
  18. 18.
    Röthlin F, Pelikan J, Ganahl K (2013) Die Gesundheitskompetenz von 15-jährigen Jugendlichen in Österreich. Abschlussbericht der österreichischen Gesundheitskompetenz Jugendstudie im Auftrag des Hauptverbands der österreichischen Sozialversicherungsträger (HVSV). http://lbihpr.lbg.ac.at.w8.netz-werk.com/sites/files/lbihpr/attachments/hljugend_bericht.pdf. Accessed 16 June 2015
  19. 19.
    Sobin LH (2009) TNM classification of malignant tumors (UICC), vol 7. Wiley, New YorkGoogle Scholar
  20. 20.
    Hewitt M, Ganz PA (2006) From cancer patient to cancer survivor. Lost in transition an American Society of Clinical Oncology and Institute of Medicine Symposium. National Acad. Press, WashingtonGoogle Scholar
  21. 21.
    Puts MTE, Papoutsis A, Springall E, et al. (2012) A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment. Support Care Cancer 20(7):1377–1394. doi:10.1007/s00520-012-1450-7 PubMedCrossRefGoogle Scholar
  22. 22.
    Shifflett P, Gansler T, Baker F (2002) Navigating the health service network: helping cancer survivors find what they need. CA Cancer J Clin 52(4):190–194. doi:10.3322/canjclin.52.4.190 CrossRefGoogle Scholar
  23. 23.
    Koinberg I, Holmberg L, Fridlund B (2001) Satisfaction with routine follow-up visits to the physician. Acta Oncol 40(4):454–459PubMedCrossRefGoogle Scholar
  24. 24.
    Dreier M, Borutta B, Töppich J, et al. (2012) Früherkennung von brust- und gebärmutterhalskrebs - ein systematischer review zu wissen, einstellungen und inanspruchnahmeverhalten der Frauen in Deutschland. Gesundheitswesen 74(11):722–735. doi:10.1055/s-0031-1286271 PubMedGoogle Scholar
  25. 25.
    Adolph H, Walther J (2014) Soziale und finanzielle Belastungen nehmen zu. 31. Deutscher Krebskongress: p. 11Google Scholar
  26. 26.
    Horizonte Göttingen e.V. (2008) Ambulante Breast Care Nurse Pflegeexpertin für BrusterkrankungenGoogle Scholar
  27. 27.
    Meindl A, Ditsch N, Kast K, et al. (2011) Familiäres mamma- und ovarialkarzinom. Dtsch Arztebl Int 108(19):323–330. doi:10.3238/arztebl.2011.0323 PubMedPubMedCentralGoogle Scholar
  28. 28.
    Gysels M, Richardson A, Higginson IJ (2004) Communication training for health professionals who care for patients with cancer: a systematic review of effectiveness. Support Care Cancer 12(10):692–700. doi:10.1007/s00520-004-0666-6
  29. 29.
    Sharpley CF, Christie DRH (2007) Patient information preferences among breast and prostate cancer patients. Australas Radiol 51:154–158Google Scholar
  30. 30.
    Liao M, Chen S, Lin Y et al. (2014) Education and psychological support meet the supportive care needs of Taiwanese women three months after surgery for newly diagnosed breast cancer: a non-randomised quasi-experimental study. Int J Nurs Stud 51(3):390–399. doi:10.1016/j.ijnurstu.2013.07.007
  31. 31.
    King M, Jones L, Richardson A et al. (2008) The relationship between patients’ experiences of continuity of cancer care and health outcomes: a mixed methods study. Br J Cancer 98(3):529–536. doi:10.1038/sj.bjc.6604164
  32. 32.
    Porst R (2011) Fragebogen. Ein Arbeitsbuch, 3. Aufl. VS, Verl. für Sozialwiss., WiesbadenGoogle Scholar
  33. 33.
    Schmidt A, Driller E, Neumann M, et al. (2012) The association between critical life events, sociodemographic data and physical activity in the development of myocardial infarction in smokers and ex-smokers. OJPM 2(3):403–409. doi:10.4236/ojpm.2012.23058

Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Anna Schmidt
    • 1
  • Nicole Ernstmann
    • 1
  • Simone Wesselmann
    • 2
  • Holger Pfaff
    • 1
  • Markus Wirtz
    • 3
  • Christoph Kowalski
    • 2
  1. 1.Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMVR), Faculty of Human Science and Faculty of MedicineUniversity of CologneCologneGermany
  2. 2.German Cancer SocietyBerlinGermany
  3. 3.Institute for PsychologyUniversity of EducationFreiburgGermany

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